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AMERICAN ACADEMY OF PEDIATRICS AMERICAN ACADEMY OF PEDIATRICS

Textbook of Pediatric Care


Textbook of Pediatric Care
Textbook of
2nd Edition

M C I N E R N Y  A D A M  C A M P B E L L  D E W I T T  F O Y  K A M AT
Directed by a distinguished editorial team and featuring contributions
from experienced clinicians nationwide

Pediatric Care
Thomas K. McInerny, MD, FAAP
Henry M. Adam, MD, FAAP Includes
Deborah E. Campbell, MD, FAAP
Thomas G. DeWitt, MD, FAAP FREE eBook
Jane Meschan Foy, MD, FAAP access!
Deepak M. Kamat, MD, PhD, FAAP 2nd EDITION
The landmark guide to pediatric medicine —
updated and streamlined for today’s clinicians and students
For more than 80 years, the American Academy of Pediatrics (AAP) has been the nation’s
leading and most trusted child health authority. The new second edition of the AAP Textbook
of Pediatric Care continues the tradition by providing a wealth of expert guidance spanning

2nd EDITION
every aspect of current clinical practice.
COMPREHENSIVE SCOPE More than 3,000 pages cover screening, pathophysiology, diagnosis,
treatment, management, prevention, critical care, practice management, ethical and legal
considerations, and much more.
ESSENTIAL CLINICAL GUIDANCE Step-by-step recommendations on diagnosis, evaluation,
treatment, when to admit, and when to refer.
PRACTICAL FOCUS Directly addresses day-to-day practice concerns for efficient patient
problem-solving.
EVIDENCE-BASED APPROACH State-of-the-art approach includes relevant AAP policy, plus
links to essential online tools for practice.

New and revised in the second edition


• 75 new chapters (375 total chapters) covering the full breadth of pediatric practice
• Extensive coverage of presenting signs and symptoms
• New sections on pediatric assessment and care of special populations
• Comprehensive coverage of health supervision
• Enhanced focus on patient- and family-centered medical home, plus expanded
coverage of mental health topics
• eBook accessible on mobile devices

McInerny
AAP Textbook of Pediatric Care, 2nd Edition, and related products can be purchased directly
from the AAP at shop.aap.org. A D A M  C A M P B E L L  D E W I T T  F O Y  K A M AT

AAP
AMERICAN ACADEMY OF PEDIATRICS

Textbook of
Pediatric Care
AMERICAN ACADEMY OF PEDIATRICS

Textbook of
Pediatric Care 2ND EDITION

Thomas K. McInerny, MD, FAAP


Editor in Chief
Professor Emeritus, Department of Pediatrics
University of Rochester Medical Center
Rochester, New York

Co-editors
Henry M. Adam, MD, FAAP Jane Meschan Foy, MD, FAAP
Bronx, New York Professor of Pediatrics
Wake Forest School of Medicine
Deborah E. Campbell, MD, FAAP Winston-Salem, North Carolina
Professor of Clinical Pediatrics
Chief, Division of Neonatology Deepak M. Kamat, MD, PhD, FAAP
Department of Pediatrics Professor of Pediatrics
The Children’s Hospital at Montefiore Vice Chair for Education
Albert Einstein College of Medicine Department of Pediatrics
Bronx, New York Wayne State University School of Medicine
Designated Institutional Official
Thomas G. DeWitt, MD, FAAP Children’s Hospital of Michigan
Carl Weihl Professor of Pediatrics Detroit, Michigan
Director of the Division of General and Community
Pediatrics
Associate Chair for Education
Department of Pediatrics
University of Cincinnati College of Medicine
Designated Institutional Official
Cincinnati Children’s Hospital Medical Center
Cincinnati, Ohio

Tools Editors
Rebecca Baum, MD, FAAP Kelly J. Kelleher, MD, MPH, FAAP
Associate Professor of Pediatrics Professor of Pediatrics, Psychiatry, and Public Health
Section of Developmental Behavioral Pediatrics Nationwide Children’s Hospital
Nationwide Children’s Hospital The Ohio State University School of Medicine
The Ohio State University School of Medicine Columbus, Ohio
Columbus, Ohio
Director, Department of Publishing: Mark Grimes
Senior Product Development Editor: Chris Wiberg
Editorial Assistant: Carrie Peters
Manager, Publications Production and Manufacturing: Theresa Wiener
Manager, Graphic Design and Production: Peg Mulcahy
Director, Department of Marketing and Sales: Mary Lou White
Brand Manager, Clinical and Professional Publications: Linda Smessaert, MSIMC

Library of Congress Control Number: 2016939165

ISBN-13: 978-1-58110-966-5
eISBN: 978-1-61002-047-3
MA0773

The recommendations in this publication do not indicate an exclusive course of treatment or serve as a standard of medical care.
Variations, taking into account individual circumstances, may be appropriate.

Every effort is made to keep this publication consistent with the most recent advice and information available from the American
Academy of Pediatrics.

Every effort has been made to ensure that the drug selection and dosage set forth in this text are in accordance with the current
recommendations and practice at the time of publication. It is the responsibility of the health care provider to check the package
insert of each drug for any change in indications and dosage and for added warnings and precautions.

The mention of product names in this publication is for informational purposes only and does not imply endorsement by the
American Academy of Pediatrics.

The American Academy of Pediatrics is not responsible for the content of the resources mentioned in this publication. Web site
addresses are as current as possible, but may change at any time.

The publishers have made every effort to trace the copyright holders for borrowed material. If they have inadvertently
overlooked any, they will be pleased to make the necessary arrangements at the first opportunity.

© 2017 by the American Academy of Pediatrics. All rights reserved. No part of this publication may be reproduced, stored in a
retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise,
without prior permission from the publisher (locate title at http://ebooks.aappublications.org and click on © Get Permissions;
you may also fax the permissions editor at 847/434-8780 or e-mail permissions@aap.org).

Printed in the United States of America.

Disclosures

Dr. Alexander indicated a speakers’ bureau relationship with Merck Vaccines. Dr. Antaya indicated an expert witness relationship
with Hoffmann-LaRoche. Dr. Caserta indicated an editorial relationship with Merck & Co. Dr. Chitlur indicated advisory board
relationships with Novo Nordisk and Biogen Idec. Dr. Congeni indicated speakers’ bureau relationships with Pfizer, Merck, and
Sanofi Pasteur. Dr. Dinakar indicated a speakers’ bureau relationship with Teva Pharmaceutical Industries Ltd. Dr. Goldstein
indicated a consulting and clinical trial relationship with Baxter Healthcare and stock ownership in Hema Metrics Inc. Dr. Kerlin
indicated an advisory board relationship with Bayer HealthCare US. Dr. Kocoshis indicated a consultant and funded investigator
relationship with NPS Pharmaceuticals. Dr. Levitt indicated stock ownership in JustRight Surgical. Dr. Marcus indicated a
speakers’ bureau relationship with Meda Pharmaceuticals. Dr. McFarren indicated a family member has stock ownership in
Novartis. Dr. Ross indicated a family member has stock ownership in General Electric, Bristol-Myers Squibb, and Mead Johnson.
Dr. Saeed indicated a speakers’ bureau relationship with AbbVie Inc. Dr. Sahai indicated stock ownership in Dr. Reddy’s
Laboratories. Dr. Schanler indicated an advisory board relationship with Medela. Dr. Schmitt indicated that he is a co-owner and
has an intellectual property relationship with Self Care Decisions and Schmitt-Thompson Clinical Content. Dr. Simon indicated
that he is president of and a majority stockholder in Secretory IgA, Inc. and sIRNAx, Inc. Dr. Tan indicated a consultant and
advisory board relationship with Sanofi Pasteur, and a consultant and advisory board relationship with GlaxoSmithKline.
Dr. Trent indicated an advisory council relationship with Church & Dwight. All other contributors disclosed no relevant financial
relationships.

Suggested Citation: McInerny TK, Adam HM, Campbell DE, DeWitt TG, Foy JM, Kamat DM, eds. American Academy of
Pediatrics Textbook of Pediatric Care. 2nd ed. Elk Grove Village, IL: American Academy of Pediatrics; 2017.

9-379/0516

1 2 3 4 5 6 7 8 9 10
DEDICATION

We dedicate this edition to Robert Hoekelman, MD,


whose legacy of excellence, commitment to quality
health care for children, and dedication to education
in pediatrics are reflected in these pages.
Foreword

The American Academy of Pediatrics (AAP) and more. Priorities for the 21st century, including the
our member pediatricians dedicate ourselves to practice of evidence-based medicine, electronic
promoting the optimal physical, mental, and social health records, and continuous quality improve-
health and well-being of infants, children, adoles- ment, are also addressed. There is fully integrated
cents, and young adults. An important aspect of our coverage of mental health topics, in keeping with
work is creating the educational materials necessary the Academy’s mission, and enhanced discussion of
to provide appropriate, equitable, and high-quality the family-centered medical home, including impor-
pediatric care. I am proud to announce the second tant topics such as health literacy.
edition of the AAP Textbook of Pediatric Care. Because the practice of pediatrics is constantly
The AAP is the leading publisher in the field of changing and because we need information to be
pediatrics, offering more than 500 publications, accessible in multiple ways, we also offer this
both print and electronic, for pediatricians and textbook as part of Pediatric Care Online, our
other health professionals who care for children. Web-based point-of-care resource. Pediatric Care
This kind of leadership saves lives, improves chil- Online was brand new when the first edition of
dren’s health, and supports the high quality of the this textbook was published. It has since grown
profession of pediatrics. into an indispensable and comprehensive resource
The second edition of the AAP Textbook of Pedi- for the practicing pediatrician. It features the
atric Care was created by a distinguished editorial complete text of this book and the Red Book, an
team led by Thomas K. McInerny, MD, FAAP. extensive library of patient education handouts in
Featuring contributions from experienced clinicians English and Spanish, quick reference topics based
worldwide, this textbook addresses clinical issues on this book, interactive clinical tools, and much
faced by physicians who care for children: screen- more. Please see pediatriccare.solutions.aap.org
ing, diagnosis, treatment, and management for both for updates to the Textbook and the latest news in
common and uncommon diseases. The second pediatric health care.
edition contains more than 75 new chapters on Benard P. Dreyer, MD, FAAP
specific diseases, conditions, signs, symptoms, and President, American Academy of Pediatrics, 2016

Foreword vii
Introduction

In 2008, the American Academy of Pediatrics for trusted pediatric information. The Textbook,
(AAP) revised and updated Dr. Robert Hoekelman’s linked with the other components of Pediatric Care
venerable Primary Pediatric Care to create a new, Online—namely, Red Book Online and Pediatric
comprehensive resource centered around the Patient Education—provides a single point-of-care
concept of the medical home. The first edition of resource for child health professionals as we con-
the AAP Textbook of Pediatric Care applied the tinue to move into an increasingly digital world. In
principles of evidence-based medicine to a diverse addition, Pediatric Care Online provides a more-
range of practice settings, including community than-complete version of the Textbook, including
health clinics, solo and private group practices, and full reference lists, interactive tools and forms,
hospitals, and to pediatricians practicing in urban, new and updated Point-of-Care Quick Reference
suburban, and rural areas. topics, and exclusive online-only chapters, beginning
The nearly eight years since that first publication with an important chapter on Disaster Prepared-
have seen enormous changes in the practice of pe- ness and Response, which is available now.
diatric medicine; in our understanding of the rela- In addition to these exciting electronic develop-
tionships between mental and physiologic health ments, we think you will find the core content of the
and between early childhood adversity and long- Textbook more valuable and relevant than ever.
term health outcomes; and, not the least, in the Part 1, Delivering Pediatric Health Care, dis-
ways in which medical information can be orga- cusses health care delivery and organizational
nized, distributed, and accessed. This new, fully issues for pediatric practices, including the use
revised second edition has been created in re- of electronic health records, digital resources,
sponse to these important challenges. evidence-based medicine, and methodologies for
Reflecting the importance of incorporating men- quality improvement. This new edition highlights
tal health care into routine primary pediatric care, the importance of patient- and family-centered care.
we have reorganized the book’s content so that Part 2, Principles of Care, has been reorganized
mental health screening, surveillance, promotion, to encompass the full range of traditional pediatric
symptoms, and conditions are now fully integrated practice as well as emerging issues that pediatri-
throughout, rather than being divided into a sepa- cians now deal with day to day. Section One covers
rate section. New chapters have been added, in- physical, behavioral, and social assessment. Sec-
cluding several based directly on the work of the tion Two features a greatly expanded discussion of
AAP Task Force on Mental Health. health promotion based on the Bright Futures
In addition to the enhanced coverage of mental guidelines, including environmental health, com-
health topics, new chapters have been developed munity pediatrics, surveillance and screening, and,
that cover more than 25 new diseases and condi- crucially, emerging issues such as obesity, physical
tions and more than a dozen new signs and symp- activity, healthy use of media, and violence preven-
toms. Furthermore, each chapter’s selection of Tools tion. Section Three covers the general management
for Practice has been fully updated. Two dedicated of children with health and behavioral problems,
tools editors have undertaken the task of reviewing including communication strategies, the provision
and curating these tools for patient engagement, of culturally effective care, pain management, psy-
medical decision support, community advocacy, chosocial and psychopharmacologic therapies,
and practice management throughout the book. transitions to adulthood, and palliative, end-of-life,
The AAP recognizes that physicians need not and bereavement care. Section Four highlights the
only in-depth educational and resource materials unique challenges to the pediatrician in caring for
for learning but also point-of-care decision support special populations, such as children exposed to
and tools to engage patients. To meet these needs, adverse childhood experiences, in foster or kinship
the Textbook is now seamlessly integrated within care, in the juvenile justice system, and in military
Pediatric Care Online, the essential AAP resource families, as well as lesbian, gay, and bisexual youth.

Introduction ix
x Introduction

Part 3, Maternal and Fetal Health: Effect on and symptoms encountered by the pediatrician.
Pregnancy Outcomes and Perinatal Health, dis- These chapters include the physical and laboratory
cusses the developing opportunities in prenatal di- evaluation necessary to formulate a differential di-
agnosis and fetal interventions as well as perinatal agnosis, followed by approaches to initial manage-
preventive care, assisted reproductive technolo- ment and guidance on when to refer and when to
gies, and the effects of maternal depression. admit.
Part 4, Care of Healthy and High-Risk Infants, Part 7, Specific Clinical Problems, details the
covers the primary care pediatrician’s role in common physical and mental health issues seen in
neonatal care. Section One addresses routine care pediatric primary care settings. The latest evidence-
issues, such as breastfeeding, the circumcision deci- based medicine information is used to enable the
sion, hospital discharge, and follow-up care, as well pediatrician to follow the recommended guidelines
as medical-legal considerations. Section Two deals for diagnosis and treatment.
with assessment and physical examination of the Part 8, Critical Situations, guides the pediatri-
newborn, including maternal medical history, com- cian in responding to life-threatening illnesses and
mon congenital anomalies, and postnatal evaluation injuries seen in children, including psychiatric
of prenatal findings. Section Three covers the most emergencies such as suicidality and psychosis,
common neonatal medical conditions, including enabling rapid diagnosis and treatment.
jaundice, abnormalities of growth, breathing As always, this textbook marshals the full re-
disorders, heart murmur, cyanosis, metabolic con- sources and expertise of the AAP. The contributing
ditions, and neurologic findings. Section Four authors include more than 500 top clinicians and
provides guidance in caring for the high-risk infant, experts across the scope of pediatrics and chil-
including surgical emergencies of the chest and dren’s health. Each chapter has been reviewed by
abdomen. Section Five encompasses health experts representing the relevant AAP committees,
and developmental outcomes of medically complex sections, and councils to ensure that the best evi-
neonates, including very preterm and very low- dence and AAP policy are reflected. Finally, chap-
birth-weight infants as well as those with signifi- ters are cross-referenced to relevant AAP policy
cant congenital heart disease and those treated statements, clinical and technical reports, and clini-
with therapeutic hypothermia. This section also cal practice guidelines.
discusses palliative and supportive care needs. Sec- We would like to gratefully acknowledge the
tion Six provides guidance on supporting families work of the AAP editorial team, including senior
whose infant is sick or dying. developmental editor Chris Wiberg and assistant
Part 5, Adolescence, discusses issues specific to editor Carrie Peters, along with the many other
teenagers, such as interviewing and counseling, as staff members from AAP Publishing who have
well as adolescent sexuality, including contracep- made this new edition possible. We hope you will
tion, pregnancy, and abortion. find this textbook to be a valuable addition to your
Part 6, Presenting Signs and Symptoms, pro- library—in print, digital, or both formats—and
vides alphabetized, easy-to-use guidance on 85 of an indispensable resource as you care for your
the most common physiologic and behavioral signs patients.
Thomas K. McInerny
Henry M. Adam
Deborah E. Campbell
Thomas G. DeWitt
Jane Meschan Foy
Deepak M. Kamat
Contributors

Nahed Abdel-Haq, MD Kenneth A. Alexander, MD, PhD


Associate Professor of Pediatrics Chief, Division of Allergy, Immunology, Rheumatology,
Wayne State University School of Medicine and Infectious Diseases
Division of Infectious Diseases Nemours Children’s Hospital
Children’s Hospital of Michigan Orlando, Florida
Detroit, Michigan 254: Fungal Infections (Systemic)
308: Parasitic Infections
Sheryl E. Allen, MD, MS, FAAP
J. Stuart Ablon, PhD Associate Professor of Clinical Emergency Medicine
Director, Think:Kids and Pediatrics
Massachusetts General Hospital Indiana University School of Medicine
Associate Clinical Professor Indianapolis, Indiana
Harvard Medical School 79: Children in Poverty
Boston, Massachusetts
302: Oppositional Defiant Disorder Alaa Al Nofal, MD
Assistant Professor of Pediatrics
Rhonda Graves Acholonu, MD, FAAP Division of Pediatric Endocrinology
Associate Dean for Diversity and Academic Affairs Sanford Children Subspecialty Clinic
Director of Medical Education in the Clinical Sciences Sioux Falls, South Dakota
Assistant Professor of Pediatrics University of South Dakota
New York University School of Medicine 354: Diabetic Ketoacidosis
New York, New York
71: Children of Divorce George Alvarado, MD
Director, Child and Adolescent Psychiatry Service
Henry M. Adam, MD, FAAP Ambulatory Psychiatry Network
Bronx, New York Maimonides Medical Center
53: Physiology and Management of Fever Brooklyn, New York
210: Adjustment Disorder in Children and Adolescents
Darius J. Adams, MD
Director, Personalized Genomic Medicine Jorge A. Alvarez, MD, PhD
Atlantic Health System Teaching Fellow in Cardiovascular Disease
Division Head of Genetics and Metabolism Brown University
Goryeb Children’s Hospital Rhode Island Hospital
Morristown, New Jersey Providence, Rhode Island
106: Specific Congenital Metabolic Diseases 286: Lipid Abnormalities

Horacio Esteban Adrogue, MD, FASN Neil Joseph B. Alviedo, MD


Founder and President Assistant Professor of Pediatrics
APEX Kidney Care PLLC Division of Neonatology
Houston, Texas University of Florida College of Medicine
263: Hemolytic-Uremic Syndrome Jacksonville, Florida
264: Henoch-Schönlein Purpura 104: Prenatal Drug Use: Neonatal Effects and the Drug
365: Acute Kidney Injury Withdrawal Syndrome

Mohamed Farooq Ahamed, MD, FAAP Ahdi Amer, MD, FAAP


Fellow Associate Professor
Department of Pediatrics, Division of Neonatology Carman and Ann Adams Department of Pediatrics
The Children’s Hospital at Montefiore Wayne State University School of Medicine
Bronx, New York Children’s Hospital of Michigan
108: Surgical Emergencies of the Chest and Abdomen in Detroit, Michigan
the Newborn 316: Positional Deformational Plagiocephaly

Martina B. Albright, PhD John T. Anderson, MD


Assistant Clinical Professor of Psychology Assistant Professor of Orthopaedic Surgery
Department of Psychiatry University of Missouri-Kansas City School of Medicine
Massachusetts General Hospital Children’s Mercy Kansas City
Boston, Massachusetts Kansas City, Missouri
302: Oppositional Defiant Disorder 333: Spinal Deformities

Contributors xi
xii Contributors

Joseph Angelo, MD, FAAP Jeffrey R. Avner, MD, FAAP


Assistant Professor of Pediatrics Professor of Clinical Pediatrics
Renal Service Co-Director, Medical Student Education in Pediatrics
Baylor University-Baylor College of Medicine Albert Einstein College of Medicine
Texas Children’s Hospital Chief, Pediatric Emergency Medicine
Houston, Texas The Children’s Hospital at Montefiore
263: Hemolytic-Uremic Syndrome Bronx, New York
155: Gastrointestinal Hemorrhage
Richard J. Antaya, MD, FAAP, FAAD, FSPD 349: Altered Mental Status
Professor of Dermatology and Pediatrics
Director, Pediatric Dermatology Philippe Backeljauw, MD, FAAP
Yale University School of Medicine Professor of Clinical Pediatrics
New Haven, Connecticut Cincinnati Children’s Hospital Medical Center
320: Psoriasis University of Cincinnati College of Medicine
Cincinnati, Ohio
Jugpal S. Arneja, MD, MBA, FAAP, FACS, FRCSC 342: Turner Syndrome and Noonan Syndrome
Associate Professor (Clinical)
Division of Plastic Surgery Sarah Bagley, MD, FAAP
University of British Columbia Addiction Medicine Fellow
Associate Chief, Surgery Boston University Medical Center
British Columbia Children’s Hospital Boston, Massachusetts
Vancouver, British Columbia, Canada 198: Substance Use: Initial Approach in Primary Care
229: Cleft Lip and Cleft Palate 336: Substance Use Disorders
261: Hemangiomas
Laura L. Bailet, PhD
Tsovinar Arutyunyan, MD Operational Vice President
Clinical Lecturer in Critical Care Nemours Bright Start!
Department of Pediatrics Assistant Professor
University of Michigan Health System Mayo College of Medicine
Ann Arbor, Michigan Jacksonville, Florida
373: Shock 284: Learning Disorders

Basim I. Asmar, MD Sophie J. Balk, MD, FAAP


Professor of Pediatrics Attending Pediatrician
Wayne State University School of Medicine The Children’s Hospital at Montefiore
Director, Division of Infectious Diseases Professor of Clinical Pediatrics
Children’s Hospital of Michigan Albert Einstein College of Medicine
Detroit, Michigan Bronx, New York
308: Parasitic Infections 19: Environmental Health: The Role of the Primary
Care Physician
Andrea Gottsegen Asnes, MD, MSW, FAAP
Associate Professor Felix Banadera, MD
Yale University School of Medicine Assistant Professor of Pediatrics
Department of Pediatrics Division of Neonatology
New Haven, Connecticut University of Florida College of Medicine
329: Sexual Abuse of Children Jacksonville, Florida
104: Prenatal Drug Use: Neonatal Effects and the Drug
William Atkinson, MD, MPH Withdrawal Syndrome
Immunization Action Coalition
Saint Paul, Minnesota Shireen Banerji, PharmD, DABAT
20: Immunizations Clinical Managing Toxicologist
Rocky Mountain Poison Center
Peter A. M. Auld, MD Denver, Colorado
Former Director, Neonatology Clinical Instructor
Professor Emeritus of Pediatrics Department of Clinical Pharmacy
Weill Cornell Medical College University of Colorado
New York, New York Skaggs School of Pharmacy
81: Assisted Reproductive Technologies, Multiple Births, Aurora, Colorado
and Pregnancy Outcomes 358: Envenomations

Jennifer Aunspaugh, MD Nancy K. Barnett, MD, FAAP


Program Director, Pediatric Anesthesia Dermatology of Cape Cod
Assistant Professor Falmouth, Massachusetts
Division of Pediatric Anesthesiology Affiliate, Tufts Medical Center
Arkansas Children’s Hospital Department of Dermatology
University of Arkansas for Medical Sciences Boston, Massachusetts
Little Rock, Arkansas 126: Alopecia and Hair Shaft Anomalies
64: Postoperative Care 166: Hyperhidrosis
184: Pruritus
277: Insect Bites and Infestations
Contributors xiii

Christine E. Barron, MD, FAAP Robert J. Bidwell, MD


Associate Professor of Pediatrics (Clinical) Associate Clinical Professor of Pediatrics
The Warren Alpert Medical School of Brown University University of Hawai’i John A. Burns School of Medicine
Director, Aubin Child Protection Program Honolulu, Hawaii
Hasbro Children’s Hospital 76: Lesbian, Gay, and Bisexual Youth
Providence, Rhode Island 156: Gender Expression and Identity Issues
371: Rape
Carol J. Blaisdell, MD
Rebecca Baum, MD, FAAP Medical Officer, Lung Development, and Pediatrics
Associate Professor of Pediatrics Lung Biology and Diseases Branch
Section of Developmental Behavioral Pediatrics Division of Lung Diseases
Nationwide Children’s Hospital National Heart, Lung, and Blood Institute
The Ohio State University School of Medicine National Institutes of Health
Columbus, Ohio Bethesda, Maryland
177: Medically Unexplained Symptoms 217: Apparent Life-Threatening Events
231: Colic
Diane E. Bloomfield, MD, FAAP
Peter F. Belamarich, MD, FAAP Department of Pediatrics
The Children’s Hospital at Montefiore
Director, Division of General Pediatrics
Bronx, New York
The Children’s Hospital at Montefiore
87: Care of the Newborn After Delivery
Associate Professor of Clinical Pediatrics
207: Weight Loss
Albert Einstein College of Medicine
Bronx, New York Lisa Bohra, MD
124: Abdominal Distention Clinical Assistant Professor
134: Constipation Department of Ophthalmology
Wayne State University School of Medicine
Jane Sanders Bellet, MD, FAAD
Detroit, Michigan
Associate Professor of Pediatrics
Clinical Assistant Professor
Associate Professor of Dermatology
Department of Ophthalmology
Duke University School of Medicine
Oakland University William Beaumont School of Medicine
Durham, North Carolina
Rochester, Michigan
307: Papulosquamous Diseases
300: Ocular Trauma
Alex Benson, MBBS, MSc, FRCS (Plast)
Denise Bothe, MD
Burns, Reconstructive and Plastic Surgeon at NHS
Assistant Professor of Pediatrics
Warrington, United Kingdom
Developmental Behavioral Pediatrics
261: Hemangiomas
Division of Pediatrics
John P. Bent, MD Rainbow Babies and Children’s Hospital
Director of Pediatric Otolaryngology–Head and Neck Case Medical Center
Surgery Cleveland, Ohio
Professor 56: Self-Regulation Therapies: Hypnosis and Biofeedback
Albert Einstein College of Medicine William E. Boyle, MD, FAAP
The Children’s Hospital at Montefiore Professor of Pediatrics and of Community and Family
Bronx, New York Medicine
197: Stridor Geisel School of Medicine at Dartmouth College
Hanover, New Hampshire
Judy C. Bernbaum, MD, FAAP
13: Pediatric History: Assessing the Child
Director, Neonatal Follow Up Program
The Children’s Hospital of Philadelphia Michael T. Brady, MD, FAAP
Professor of Pediatrics Emeritus Professor of Pediatrics
The Perelman School of Medicine of the University of The Ohio State University School of Medicine
Pennsylvania Associate Medical Director
Department of Pediatrics, Division of General Pediatrics Nationwide Children’s Hospital
The Children’s Hospital of Philadelphia Columbus, Ohio
Philadelphia, Pennsylvania 268: Human Immunodeficiency Virus Infection and
114: Follow-up Care of the Graduate From Neonatal Acquired Immunodeficiency Syndrome
Intensive Care
115: Health and Developmental Outcomes of Very Susan L. Bratton, MD, MPH, FAAP
Preterm and Very Low-Birth-Weight Infants Professor of Pediatrics
Division of Pediatric Critical Care Medicine
David T. Bernhardt, MD, FAAP University of Utah
Professor Salt Lake City, Utah
Department of Pediatrics, Orthopedics and Rehabilitation 368: Pneumothorax and Pneumomediastinum
Division of Sports Medicine
University of Wisconsin School of Medicine and Joel S. Brenner, MD, MPH, FAAP
Public Health Director, Sports Medicine and Adolescent Medicine
Madison, Wisconsin Children’s Hospital of The King’s Daughters
17: Sports Preparticipation Physical Evaluation Associate Professor of Pediatrics
Eastern Virginia Medical School
Norfolk, Virginia
131: Back Pain
xiv Contributors

Luc P. Brion, MD, FAAP Michael U. Callaghan, MD


Professor of Pediatrics Assistant Professor of Pediatrics
Division of Neonatal-Perinatal Medicine Division of Hematology/Oncology
University of Texas Southwestern Medical Center Carmen and Anne Adams Department of Pediatrics
Dallas, Texas Wayne State University School of Medicine
99: Neonatal Jaundice Children’s Hospital of Michigan
Detroit, Michigan
Alvin C. Bronstein, MD, FACEP 59: Blood Products and Their Uses
Medical Director 230: Coagulation Disorders
Rocky Mountain Poison Center
Denver Health Deborah E. Campbell, MD, FAAP
Associate Professor Professor of Clinical Pediatrics
Department of Emergency Medicine Chief, Division of Neonatology
University of Colorado School of Medicine Department of Pediatrics
Aurora, Colorado The Children’s Hospital at Montefiore
358: Envenomations Albert Einstein College of Medicine
Bronx, New York
Christie J. Bruno, DO, FAAP 86: Prenatal Pediatric Visit
Assistant Professor of Pediatrics 90: Care of the Late Preterm Infant
Albert Einstein College of Medicine 92: Follow-up Care of the Healthy Newborn
Attending Neonatologist 93: Maternal Medical History
Department of Pediatrics 94: Physical Examination of the Newborn
Division of Neonatology 97: Postnatal Assessment of Common Prenatal
The Children’s Hospital at Montefiore Sonographic Findings
Bronx, New York 112: Continuing Care of the Infant After Transfer From
81: Assisted Reproductive Technologies, Multiple Births, Neonatal Intensive Care
and Pregnancy Outcomes 113: Discharge Planning for the High-Risk Newborn
Requiring Intensive Care
Ann M. Buchanan, MD, MPH, FAAP 115: Health and Developmental Outcomes of Very
Consulting Associate, Pediatric Infectious Diseases Preterm and Very Low-Birth-Weight Infants
Duke University Medical Center 116: Health and Developmental Outcomes of Selected
Durham, North Carolina Medically Complex Neonates
289: Meningitis 117: Support for Families Whose Infant Is Sick or Dying
Marilyn J. Bull, MD, FAAP John Campo, MD
Morris Green Professor of Pediatrics Professor and Chair
Section of Developmental Pediatrics Department of Psychiatry and Behavioral Health
Riley Hospital for Children at IU Health The Ohio State University Wexner Medical Center
Indiana University School of Medicine Columbus, Ohio
Indianapolis, Indiana 177: Medically Unexplained Symptoms
244: Down Syndrome: Managing the Child and Family
Mary T. Caserta, MD
Michael G. Burke, MD, MBA, FHM, FAAP Professor of Pediatrics
Department of Pediatrics Division of Pediatric Infectious Diseases
Johns Hopkins University School of Medicine University of Rochester Medical Center
Saint Agnes Hospital Rochester, New York
Baltimore, Maryland 366: Meningococcemia
147: Extremity Pain
Jared Cash, BS, PharmD, BCPS
James J. Burns, MD, MPH Director, Pharmacy
Clinical Professor of Pediatrics Primary Children’s Hospital
Florida State University College of Medicine Intermountain Healthcare
Pensacola, Florida Salt Lake City, Utah
339: Tonsillectomy and Adenoidectomy 246: Drug Interactions and Adverse Effects
Eric M. Butter, PhD Heidi Castillo, MD, FAAP
Director, Child Development Center Assistant Professor of Pediatrics
Nationwide Children’s Hospital Baylor College of Medicine
Associate Chief of Psychology, Developmental and The Meyer Center for Developmental Pediatrics
Behavioral Pediatrics Texas Children’s Hospital
Associate Professor Houston, Texas
Departments of Pediatrics and Psychology 296: Neural Tube Defects
The Ohio State University School of Medicine
Columbus, Ohio Sarah Chambers, MD
221: Autism Spectrum Disorder Director, Fetal Heart Program
Assistant Professor of Pediatrics
Adriana Cadilla, MD Division of Pediatric Cardiology
Nemours Children’s Hospital The Children’s Hospital at Montefiore
Orlando, Florida Bronx, New York
254: Fungal Infections (Systemic) 116: Health and Developmental Outcomes of Selected
Medically Complex Neonates
Contributors xv

Jayanthi Chandar, MD Bruce H. Cohen, MD


Associate Professor of Clinical Pediatrics Director of the NeuroDevelopmental Science
University of Miami Miller School of Medicine Center
Medical Director, Pediatric Kidney Transplant Program Professor of Pediatrics
Miami Transplant Institute Akron Children’s Hospital
Miami, Florida Northeast Ohio Medical University
163: High Blood Pressure Akron, Ohio
223: Brain Tumors
Pimpanada Chearskul, MD, FAAP
Children’s Hospital of Michigan Judith A. Cohen, MD
Department of Pediatrics Professor of Psychiatry
Wayne State University School of Medicine Allegheny General Hospital
Detroit, Michigan Drexel University College of Medicine
308: Parasitic Infections Pittsburgh, Pennsylvania
317: Post-traumatic Stress Disorder
Amy Yuntzu-Yen Chen, MD, FAAD
Assistant Professor of Dermatology William I. Cohen, MD†
Department of Dermatology 278: Intellectual Disability
University of Connecticut School of Medicine
Farmington, Connecticut Molly Cole
95: Neonatal Skin Director, CT Council on Developmental Disabilities
Past President, Family Voices Inc.
Catherine Chen, MD Albuquerque, New Mexico
Division of Dermatology 9: Partnering With Families in Hospital and
Scripps Clinic Medical Group Community Settings
San Diego, California
209: Acne Blaise Congeni, MD
345: Verrucae (Warts) Director, Division of Infectious Diseases
Akron Children’s Hospital
Meera Chitlur, MD Akron, Ohio
Barnhart Lusher Hemostasis Research Endowed 60: Antimicrobial Therapy
Chair
Director, Hemophilia Treatment Center and Elizabeth Alvarez Connelly, MD
Hemostasis Program Assistant Professor of Dermatology
Associate Professor of Pediatrics Department of Dermatology and Cutaneous
Wayne State University School of Medicine Surgery
Children’s Hospital of Michigan Assistant Professor
Detroit, Michigan Department of Pediatrics
262: Hemoglobinopathies and Sickle Cell Disease Co-Director of the Division of Pediatric
Dermatology
Emma Ciafaloni, MD, FAAN, FANA University of Miami Miller School of Medicine
Professor of Neurology and Pediatrics Miami, Florida
University of Rochester Medical Center 326: Seborrheic Dermatitis
Rochester, New York
293: Muscular Dystrophy Carol Conrad, MD
Director, Pediatric Lung Transplant Program
Melinda B. Clark, MD, FAAP Associate Professor of Pediatrics
Associate Professor of Pediatrics Stanford University
Division of General Pediatrics Palo Alto, California
Albany Medical College 348: Airway Obstruction
Albany, New York
240: Dental Problems W. Carl Cooley, MD, FAAP
Chief Medical Officer, Crotched Mountain
Garfield Clunie, MD Foundation
Assistant Professor of Obstetrics and Gynecology Clinical Professor of Pediatrics
Division of Maternal-Fetal Medicine Geisel School of Medicine at Dartmouth College
Icahn School of Medicine at Mount Sinai Hanover, New Hampshire
New York, New York 6: Medical Home Collaborative Care
82: Prenatal Diagnosis 7: Planned Coordinated Care to Support the
83: Fetal Interventions Medical Home

Chanelle A. Coble, MD, FAAP Lynzee A. Cornell, PhD, F-AAA, CCC-A


Assistant Professor of Pediatrics Clinic Director and Assistant Professor
Division of General Pediatrics/Adolescent Division of Audiology
Medicine University of Louisville School of Medicine
New York University School of Medicine Louisville, Kentucky
New York, New York 26: Auditory Screening
121: Adolescent Sexuality


Deceased
xvi Contributors

Timothy Cornell, MD Joseph R. Custer, MD


Associate Professor Pediatric Critical Care Medicine
Director, Pediatric Critical Care Fellowship Professor of Pediatrics and Communicable Diseases
Department of Pediatrics and Communicable Associate Director for Fellowship Programs
Diseases Medical Director, Respiratory Therapy Services
University of Michigan C.S. Mott Children’s Hospital
Ann Arbor, Michigan University of Michigan Health System
373: Shock Ann Arbor, Michigan
Appendix B: Outpatient Procedures 373: Shock
Appendix B: Outpatient Procedures
David N. Cornfield, MD, FAAP
Anne T. and Robert M. Bass Professor of Lara Danziger-Isakov, MD, MPH, FAAP
Pulmonary Medicine Professor of Pediatrics
Director, Center for Excellence in Pulmonary Biology Director, Immunocompromised Host Infectious Disease
Department of Pediatric and (by courtesy) Surgery Cincinnati Children’s Hospital Medical Center
Stanford University School of Medicine University of Cincinnati College of Medicine
Chief, Pulmonary, Asthma, and Sleep Medicine and Cincinnati, Ohio
Medical Director, Respiratory Therapy 325: Rocky Mountain Spotted Fever
Lucile Salter Packard Children’s Hospital at Stanford
Palo Alto, California Viral A. Dave, MD, FAAP
348: Airway Obstruction Assistant Professor of Pediatrics
372: Severe Acute Asthma (Status Asthmaticus) Section of Neonatology
Department of Pediatrics
Josef Misael Cortez, MD, FAAP Texas Children’s Hospital and Baylor College
Assistant Professor of Medicine
Division of Neonatal Perinatal Medicine Houston, Texas
Department of Pediatrics 90: Care of the Late Preterm Infant
Wayne State University School of Medicine
Detroit, Michigan Lynn F. Davidson, MD, FAAP
104: Prenatal Drug Use: Neonatal Effects and the Drug Assistant Professor of Pediatrics
Withdrawal Syndrome Department of Pediatrics
Albert Einstein College of Medicine
Susan M. Coupey, MD, FAAP The Children’s Hospital at Montefiore
Professor of Pediatrics Bronx, New York
Chief, Division of Adolescent Medicine 51: Care of Children With Special Health Care Needs
Albert Einstein College of Medicine
The Children’s Hospital at Montefiore Philip W. Davidson, PhD
Bronx, New York Professor Emeritus of Pediatrics, Environmental Medicine,
121: Adolescent Sexuality and Psychiatry
University of Rochester Medical Center
Mario Cruz, MD School of Medicine and Dentistry
Assistant Professor of Pediatrics Rochester, New York
Drexel University College of Medicine 49: Discussing Serious Symptoms, Results, and
Associate Residency Program Director Diagnoses With the Patient and Family
St. Christopher’s Hospital for Children
Philadelphia, Pennsylvania Beth Ellen Davis, MD, MPH, FAAP (COL, MC, USA, Retired)
41: Healthy Sexual Development and Sexuality Clinical Professor of Pediatrics
Division of Developmental Medicine
Timothy P. Culbert, MD, FAAP University of Washington
Medical Director: Integrative Medicine Seattle, Washington
PrairieCare Medical Group 77: Children in Military Families
Chaska, Minnesota
57: Complementary and Integrative Medical Therapies Adekunle Dawodu, MBBS
Professor and Director of International Education and
David R. Cunningham, PhD Patient Care
Professor Emeritas Global Health Center
Department of Surgery Cincinnati Children’s Hospital Medical Center
School of Medicine University of Cincinnati College of Medicine
University of Louisville Cincinnati, Ohio
Louisville, Kentucky 346: Vitamin D Inadequacy
26: Auditory Screening
Lilia C. De Jesus, MD, FAAP
Dennis Cunningham, MD Clinical Assistant Professor of Pediatrics
Section of Infectious Diseases Department of Pediatrics/Neonatology Division
Nationwide Children’s Hospital UCSF Benioff Children’s Hospital
The Ohio State University School of Medicine San Francisco, California
Columbus, Ohio 104: Prenatal Drug Use: Neonatal Effects and the Drug
248: Enterovirus and Evolving Infections Withdrawal Syndrome
Contributors xvii

Sonia Dela Cruz-Rivera, MD Cecilia Di Pentima, MD, MPH, FAAP


Attending Pediatrician and Assistant Clinical Professor Department of Pediatrics
The Children’s Hospital at Montefiore Vanderbilt University School of Medicine
Albert Einstein College of Medicine Nashville, Tennessee
Division of Pediatrics 60: Antimicrobial Therapy
Bronx, New York
91: Hospital Discharge of the Healthy Term and Late Aleksandra Djukic, MD, PhD
Preterm Infant Professor of Clinical Neurology
Director, Tri State Rett Syndrome Center
Marcela Del Rio, MD, FAAP Albert Einstein College of Medicine
Assistant Professor of Pediatrics Bronx, New York
Division of Pediatric Nephrology 107: The Newborn With Neurologic Findings
Medical Director, Renal Transplantation
The Children’s Hospital at Montefiore Mary Iftner Dobbins, MD, FAAP
Albert Einstein College of Medicine Department of Family and Community Medicine
Bronx, New York Southern Illinois University School of Medicine
160: Hematuria Carbondale, Illinois
150: Family Dysfunction
David R. DeMaso, MD
Psychiatrist-in-Chief and Chairman of Psychiatry, Boston Eileen Dolan, MD
Children’s Hospital Department of Pediatrics
George P. Gardner and Olga E. Monks Professor of Child Hackensack University Medical Center
Psychiatry and Professor of Pediatrics Hackensack, New Jersey
Harvard Medical School 318: Prader-Willi Syndrome
Boston, Massachusetts
370: Psychiatric Emergencies: Suicidality, Agitation, Nienke P. Dosa, MD, MPH
Psychosis, and Disaster Exposure Upstate Foundation Professor of Child Health Policy
Center for Development Behavior and Genetics
Jayant K. Deshpande, MD, MPH, FAAP Department of Pediatrics
SVP/Chief Medical Officer SUNY Upstate Medical University
Arkansas Children’s Hospital Syracuse, New York
Professor of Pediatrics and Anesthesiology 52: School-Related Issues for Children With Special
University of Arkansas for Medical Sciences Health Care Needs
Little Rock, Arkansas
63: Preoperative Assessment Susan dosReis, PhD
64: Postoperative Care Associate Professor of Pharmacy
Department of Pharmaceutical Health Services
Leena Shrivastava Dev, MD, FAAP Research
Child Abuse Pediatrician University of Maryland School of Pharmacy
General Pediatrician Baltimore, Maryland
The Pediatric Center 62: Psychotropic Medications in Primary Care
Frederick, Maryland Pediatrics
41: Healthy Sexual Development and Sexuality
Dwayne E. Dove, MD
Chitra Dinakar, MD, FAAP, FACAAI, FAAAI 297: Neurocutaneous Syndromes
Professor of Pediatrics
University of Missouri-Kansas City School of Medicine M. Catherine Driscoll, MD
Division of Allergy, Asthma, and Immunology Professor of Clinical Pediatrics
Children’s Mercy Hospital Department of Pediatrics
Kansas City, Missouri Division of Hematology-Oncology
218: Asthma Albert Einstein College of Medicine
The Children’s Hospital at Montefiore
Linda M. Dinerman, MD, PC Bronx, New York
Adolescent and Young Adult Medicine 103: The Newborn With Hematologic Abnormalities
Private Practice
Huntsville, Alabama George T. Drugas, MD, FACS, FAAP
141: Dysmenorrhea Director of Surgical Quality Improvement
205: Vaginal Discharge Pediatric General and Thoracic Surgery
Seattle Children’s Hospital
Elaine A. Dinolfo, MD, MS, FAAP University of Washington
Assistant Clinical Professor of Pediatrics Seattle, Washington
Columbia University 359: Esophageal Caustic Injury
Attending Physician
Department of Pediatrics Howard Dubowitz, MD, MS, FAAP
Harlem Hospital Center Professor of Pediatrics
New York, New York University of Maryland School of Medicine
87: Care of the Newborn After Delivery Baltimore, Maryland
207: Weight Loss 367: Physical Abuse and Neglect
xviii Contributors

Paula M. Duncan, MD, FAAP Jonathan M. Fanaroff, MD, JD, FAAP, FCLM
Professor of Pediatrics Associate Professor of Pediatrics
University of Vermont College of Medicine Case Western Reserve University School
Burlington, Vermont of Medicine
24: Promoting the Health of Adolescents Director, Rainbow Center for Pediatric Ethics
45: Conducting the Health Supervision Visit Co-Medical Director, Neonatal Intensive Care Unit
Rainbow Babies and Children’s Hospital
Paul H. Dworkin, MD, FAAP Cleveland, Ohio
Executive Vice President for Community Child Health 85: Medical-Legal Considerations in the Care of
Connecticut Children’s Medical Center Newborns
Professor of Pediatrics
University of Connecticut School of Medicine Marianne E. Felice, MD, FAAP
Hartford, Connecticut Professor of Pediatrics and Obstetrics/Gynecology
25: Screening: General Considerations Division of Adolescent Medicine
University of Massachusetts Medical School
Dana Michelle Hines Dykes, MD Worcester, Massachusetts
Assistant Professor of Pediatrics 122: Adolescent Pregnancy and Parenthood
Division of Pediatric Gastroenterology, Hepatology, 371: Rape
and Nutrition
Cincinnati Children’s Hospital Medical Center Jon R. Felt, MD
University of Cincinnati College of Medicine Fellow, Pediatric Emergency Medicine
Cincinnati, Ohio Carman and Ann Adams Department of Pediatrics
276: Inflammatory Bowel Disease Wayne State University School of Medicine
Children’s Hospital of Michigan
Marian Earls, MD, FAAP
Detroit, Michigan
Clinical Professor of Pediatrics
58: Fluids, Electrolytes, and Acid-Base Composition
University of North Carolina Medical School
Chapel Hill, North Carolina Evan S. Fieldston, MD, MBA, MS, FAAP
Director of Pediatric Programs Assistant Professor of Pediatrics
Community Care of North Carolina Perelman School of Medicine at the University of
Raleigh, North Carolina Pennsylvania
33: Healthy Child Development Medical Director of Clinical Operations
84: Maternal Depression The Children’s Hospital of Philadelphia
Sarah Edwards, DO Philadelphia, Pennsylvania
Assistant Professor 1: Health Care Delivery System
Director of Training, Child and Adolescent Psychiatry
Fellowship Barbara H. Fiese, PhD
Medical Director of Child and Adolescent Psychiatry Professor and Director of the Family Resiliency
Hospital Services Center
Division of Child and Adolescent Psychiatry University of Illinois at Urbana-Champaign
University of Maryland School of Medicine Urbana, Illinois
Baltimore, Maryland 47: Adherence to Pediatric Health Care
192: Self-stimulating Behaviors Recommendations

Jerrold M. Eichner, MD, FAAP Lisa Figueiredo, MD


Clinical Professor of Pediatrics Division of Pediatric Hematology/Oncology
University of Washington The Children’s Hospital at Montefiore
School of Medicine Bronx, New York
Seattle, Washington 181: Petechiae and Purpura
10: Family-Centered Care of Hospitalized Children
Jeffrey S. Fine, MD, FACMT
Mohammad F. El-Baba, MD Assistant Professor
Division Chief, Pediatric Gastroenterology Ronald O. Perelman Department of Emergency Medicine
Fellowship Program Director and the Department of Pediatrics
Children’s Hospital of Michigan New York University School of Medicine
Wayne State University School of Medicine New York, New York
Detroit, Michigan 369: Poisoning
142: Dysphagia
Martin A. Finkel, DO, FACOP, FAAP
Dianne S. Elfenbein, MD, FAAP Professor of Pediatrics
Division Director, Adolescent Medicine Medical Director, Institute Co-Director
Professor of Pediatrics Child Abuse Research Education Services (CARES)
St. Louis University School of Medicine Institute
St. Louis, Missouri Rowan University School of Osteopathic Medicine
122: Adolescent Pregnancy and Parenthood Stratford, New Jersey
Robin S. Everhart, PhD 367: Physical Abuse and Neglect
Assistant Professor
Howard Fischer, MD*
Department of Psychology
233: Common Cold
Virginia Commonwealth University
Richmond, Virginia
47: Adherence to Pediatric Health Care
Recommendations *Retired
Contributors xix

Martin Fisher, MD, FAAP Karen S. Frush, MD


Chief, Division of Adolescent Medicine Professor of Pediatrics
Cohen Children’s Medical Center Chief Patient Safety Officer
Northwell Health Duke University Health System
Professor of Pediatrics Durham, North Carolina
Hofstra Northwell School of Medicine at Hofstra 12: Emergency Care
University
Hempstead, New York Mamta Fuloria, MD, FAAP
216: Anorexia Nervosa, Bulimia Nervosa, and Other Assistant Professor of Pediatrics
Eating Disorders Director, Neonatology Fellowship Program
Department of Pediatrics
Leigh Anne Flore, MD, MS Division of Neonatology
Assistant Professor of Pediatrics The Children’s Hospital at Montefiore
Division of Genetic, Genomic, and Metabolic Disorders Albert Einstein College of Medicine
Detroit Medical Center Bronx, New York
Wayne State University School of Medicine 108: Surgical Emergencies of the Chest and Abdomen in
Detroit, Michigan the Newborn
250: Fetal Alcohol Spectrum Disorders
Sheila Gahagan, MD, MPH, FAAP
Glenn Flores, MD, FAAP Professor and Chief
Distinguished Chair of Health Policy Research Division of Academic General Pediatrics
Medical Research Institute University of California, San Diego
Minneapolis, Minnesota San Diego, California
69: Caring for Families New to the United States 298: Obesity and Metabolic Syndrome

Christopher B. Forrest, MD, PhD Robert J. Gajarski, MD, MHSA, FACC


Director, Center for Child Health Development Professor of Pediatrics
The Children’s Hospital of Philadelphia Director, Cardiac Critical Care and Transplantation
Philadelphia, Pennsylvania C.S. Mott Children’s Hospital
1: Health Care Delivery System University of Michigan
Ann Arbor, Michigan
Rene J. Forti, MD 234: Congenital and Acquired Heart Disease
Assistant Professor of Clinical Pediatrics
Albert Einstein College of Medicine Mariam Gangat, MD
Attending Physician, Pediatric Emergency Medicine Department of Pediatrics
The Children’s Hospital at Montefiore Division of Pediatric Endocrinology
Bronx, New York Rutgers Robert Wood Johnson Medical School
349: Altered Mental Status New Brunswick, New Jersey
164: Hirsutism, Hypertrichosis, and Precocious Sexual
Jane Meschan Foy, MD, FAAP Hair Development
Professor of Pediatrics
Wake Forest School of Medicine Anna Christina Ganster, MD, FAAP
Winston-Salem, North Carolina Assistant Professor of Clinical Pediatrics
34: Mental Health Division of Neonatology at LAC/USC
50: Care of Children With Mental Health Problems Children’s Hospital Los Angeles
62: Psychotropic Medications in Primary Care Pediatrics Keck School of Medicine
University of Southern California
Lorry R. Frankel, MD, FCCM Los Angeles, California
Chair, Department of Pediatrics 108: Surgical Emergencies of the Chest and Abdomen in
California Pacific Medical Center the Newborn
Emeritus Professor of Pediatrics
Stanford University School of Medicine Andrew Garner, MD, PhD, FAAP
San Francisco, California Clinical Professor of Pediatrics
356: Drowning and Near Drowning (Submersion Case Western Reserve University School of Medicine
Injuries) Cleveland, Ohio
68: Children Exposed to Adverse Childhood Experiences
Barbara L. Frankowski, MD, MPH, FAAP
Professor of Pediatrics Jose M. Garza, MD
Division of Primary Care Director, Neurogastroenterology and Motility Program
University of Vermont Children’s Hospital Children’s Healthcare of Atlanta
Burlington, Vermont Children’s Center for Digestive Healthcare
23: Promoting the Health of School-aged Children Atlanta, Georgia
172: Learning Difficulty 232: Colorectal Disorders

Andrew L. Freedman, MD John P. Gearhart, MD, FAAP, FACS, FRCS


Director, Pediatric Urology Professor and Director of Pediatric Urology
Professor of Surgery The James Buchanan Brady Urological Institute
Cedars-Sinai Medical Center The Johns Hopkins Hospital
Los Angeles, California Baltimore, Maryland
89: The Circumcision Decision 272: Hypospadias, Epispadias, and Cryptorchidism
xx Contributors

Gina Marie Geis, MD, FAAP Melanie A. Gold, DO, DABMA, MQT, FAAP, FACOP
Attending Neonatologist Professor of Pediatrics
Associate Medical Director of the Neonatal Intensive Columbia University Medical Center (CUMC)
Care Unit Floating Hospital for Children at Tufts Professor of Population and Family Health
Medical Center Mailman School of Public Health, CUMC
Co-Chair of the Hospital Ethics Committee at Tufts Medical Director, School Based Health Centers
Medical Center New York−Presbyterian Hospital
Assistant Professor of Pediatrics New York, New York
Tufts University School of Medicine 75: Gay- and Lesbian-parented Families
Boston, Massachusetts 119: Interviewing Adolescents
111: Care of the Sick or Premature Infant Before
Transport Johanna Goldfarb, MD, FAAP
Pediatric Infectious Diseases
Paul L. Geltman, MD, MPH, FAAP Cleveland Clinic Children’s Hospital
Assistant Professor of Pediatrics Cleveland, Ohio
Harvard Medical School 304: Osteomyelitis
Medical Director for Refugee and Immigrant Health 328: Septic Arthritis
Division of Global Populations and Infectious Disease
Prevention David L. Goldman, MD
Massachusetts Department of Public Health Associate Professor of Pediatrics
Boston, Massachusetts Assistant Professor of Microbiology
69: Caring for Families New to the United States The Children’s Hospital at Montefiore
Albert Einstein College of Medicine
Welton M. Gersony, MD Bronx, New York
Alexander S. Nadas Emeritus Professor of Pediatrics 187: Recurrent Infections
College of Physicians and Surgeons of Columbia
University Stuart L. Goldstein, MD, FAAP, FNKF
New York, New York Director, Center for Acute Care Nephrology
323: Rheumatic Fever Cincinnati Children’s Hospital Medical Center
Professor of Pediatrics
Harry L. Gewanter, MD, FAAP, FACR University of Cincinnati College of Medicine
Pediatric Rheumatologist Cincinnati, Ohio
Pediatric and Adolescent Health Partners 365: Acute Kidney Injury
Midlothian, Virginia
324: Rheumatologic Diseases Meggan Goodpasture, MD, FAAP
Assistant Professor of Pediatrics and Adolescent Medicine
Mirko S. Gilardino, MD, MSc, FRCSC, FACS Wake Forest Baptist Medical Center
Director, Plastic Surgery Residency Program Winston-Salem, North Carolina
Associate Professor of Surgery 292: Münchausen Syndrome by Proxy: Medical Child
Division of Plastic Surgery Abuse
McGill University Health Centre
Director, Craniofacial Surgery Carol Lynn Greene, MD, FAAP, FACMG
Montreal Children’s Hospital Professor of Pediatrics
Montreal, Quebec, Canada Director of Clinical Genetics
261: Hemangiomas University of Maryland School of Medicine
Baltimore, Maryland
Jack Gladstein, MD, FAAP 291: Metabolic Disorders Beyond the Newborn Period
Professor of Pediatrics and Neurology
University of Maryland School of Medicine Frank R. Greer, MD, FAAP
Baltimore, Maryland Professor of Pediatrics
157: Headache University of Wisconsin School of Medicine and
Public Health
Mary Margaret Gleason, MD, FAAP Madison, Wisconsin
Associate Professor 36: Healthy Nutrition: Infants
Child Psychiatry and Pediatrics 37: Healthy Nutrition: Children
Tulane University School of Medicine 38: Healthy Nutrition: Adolescents
New Orleans, Louisiana
199: Symptoms of Emotional Disturbance in Young D. Gary Griffin, MD, MPH, FAAP
Children Associate Clinical Professor
Florida State University College of Medicine
Beatrice Goilav, MD Tallahassee, Florida
Assistant Professor of Pediatrics 339: Tonsillectomy and Adenoidectomy
Director, Pediatric Nephrology Training
Program James A. Grifo, MD, PhD
Division of Pediatric Nephrology Professor of Obstetrics and Gynecology
The Children’s Hospital at Montefiore New York University Langone Medical Center
Albert Einstein College of Medicine New York, New York
Bronx, New York 81: Assisted Reproductive Technologies, Multiple Births,
144: Dysuria and Pregnancy Outcomes
Contributors xxi

Lindsey K. Grossman, MD, FAAP William Harmon, MD


Chair Emerita, Department of Pediatrics Associate Professor of Pediatrics
Baystate Children’s Hospital Medical Director, Pediatric Critical Care
Tufts University School of Medicine Services
Springfield, Massachusetts University of Virginia School of Medicine
266: Herpes Infections Charlottesville, Virginia
361: Heart Failure
James Guevara, MD, MPH, FAAP
Associate Professor of Pediatrics and Epidemiology J. Peter Harris, MD
Perelman School of Medicine at the University of Professor Emeritus
Pennsylvania Department of Pediatrics
Attending Physician University of Rochester Medical Center
The Children’s Hospital of Philadelphia Rochester, New York
Philadelphia, Pennsylvania 132: Cardiac Arrhythmias
220: Attention-deficit/Hyperactivity Disorder
Sandra G. Hassink, MD, MS, FAAP
Lisa Hackney, MD Director, American Academy of Pediatrics
Clinical Assistant Professor of Pediatrics Institute for Healthy Childhood Weight
Division of Pediatric Hematology/Oncology Elk Grove Village, Illinois
Rainbow Babies and Children’s Hospital 35: Healthy Weight
Cleveland, Ohio
225: Cancers in Childhood Jessica Hawkins, MS
1: Health Care Delivery System
Waseem Hafeez, MBBS, FAAP
Associate Professor of Clinical Pediatrics Nicole Hayde, MD, MS
Albert Einstein College of Medicine Assistant Professor of Pediatrics
Attending Physician Albert Einstein College of Medicine
Division of Pediatric Emergency Medicine Bronx, New York
The Children’s Hospital at Montefiore 264: Henoch-Schönlein Purpura
Bronx, New York
169: Irritability and Fussiness Nancy Heath, PhD
Department of Educational and Counselling
Joseph F. Hagan, Jr, MD, FAAP Psychology
Clinical Professor in Pediatrics McGill University
University of Vermont College of Medicine Montreal, Quebec, Canada
Burlington, Vermont 191: Self-harm
45: Conducting the Health Supervision Visit
Elizabeth Baltus Hebert, PhD, OTR/L
David Hains, MD Assistant Clinical Professor
Associate Professor of Pediatrics Occupational Therapy
Division of Pediatric Nephrology Nazareth College of Rochester
University of Tennessee Health Science Center Rochester, New York
Memphis, Tennessee 49: Discussing Serious Symptoms, Results, and
30: Use of Urinalysis and Urine Culture in Screening Diagnoses With the Patient and Family
Caroline Breese Hall, MD†
Sebastian Heersink, MD, FACS
175: Lymphadenopathy
Eye Center South
224: Bronchiolitis
Dothan, Alabama
352: Croup (Acute Laryngotracheobronchitis)
188: Red Eye/Pink Eye
William J. Hall, MD, MACP
Lauren Henderson, MD
Director, Center for Healthy Aging
Resident Physician
Professor of Medicine
Department of Dermatology
University of Rochester Medical Center
Eastern Virginia Medical School
Rochester, New York
Norfolk, Virginia
352: Croup (Acute Laryngotracheobronchitis)
245: Drug Eruptions, Erythema Multiforme, Stevens-
David C. Hanson, MD Johnson Syndrome
Assistant Professor
Division of General Pediatrics Neil E. Herendeen, MD, FAAP
Department of Pediatrics Associate Professor of Pediatrics
University of Minnesota Masonic Children’s Hospital University of Rochester Medical Center
Minneapolis, Minnesota Rochester, New York
147: Extremity Pain 215: Animal and Human Bites
238: Cystic and Solid Masses of the Face and Neck
Winita Hardikar, MBBS, FRACP, PhD, FAASLD
Associate Professor Ginette A. Hinds, MD
Director of the Department of Gastroenterology Assistant Professor of Dermatology
Royal Children’s Hospital Johns Hopkins School of Medicine
Melbourne, Australia Baltimore, Maryland
265: Hepatitis 320: Psoriasis


Deceased
xxii Contributors

Breena Welch Holmes, MD, FAAP Sonia O. Imaizumi, MD, FAAP


Maternal and Child Health Director Medical Director
Vermont Department of Health Amerihealth New Jersey
Burlington, Vermont Cranbury, New Jersey
24: Promoting the Health of Adolescents Independence Blue Cross
Philadelphia, Pennsylvania
Charles J. Homer, MD, MPH, FAAP 51: Care of Children With Special Health Care Needs
Deputy Assistant Secretary for Human Services Policy 115: Health and Developmental Outcomes of Very
U.S. Department of Health and Human Services Preterm and Very Low-Birth-Weight Infants
Office of the Assistant Secretary for Planning and
Evaluation Lilly Cheng Immergluck, MD, MS
Washington, DC Associate Professor
5: Quality Improvement in Practice Departments of Microbiology/Biochemistry/Immunology
and Pediatrics
Douglas N. Homnick, MD, MPH, FAAP Morehouse School of Medicine
Medical Director Associate Professor of Clinical Pediatrics
Kalamazoo County Health and Community Services Division of Pediatric Infectious Diseases
Kalamazoo, Michigan Emory University
Professor of Pediatrics and Human Development Atlanta, Georgia
Division of Pediatric Pulmonology 236: Contagious Exanthematous Diseases
Michigan State University College of Human Medicine
East Lansing, Michigan Sean Indra, MD
16: Pediatric Physical Examination: Interpretation of Pediatric Emergency Medicine Fellow
Findings Children’s Hospital of Michigan
Detroit, Michigan
Robert J. Hopkin, MD, FAAP 360: Head Injuries
Associate Professor of Clinical Pediatrics
Division of Human Genetics Brian Inouye, MD
Cincinnati Children’s Hospital Medical Center Resident, Urology
University of Cincinnati College of Medicine Duke University Medical Center
Cincinnati, Ohio Durham, North Carolina
313: Pierre Robin Sequence 272: Hypospadias, Epispadias, and Cryptorchidism

Evalyn Horowitz, MD Franca M. Iorember, MD, MPH


Former Director, Juvenile Justice Associate Professor of Pediatrics
Former Chief of Public Health Division of Pediatric Nephrology
California Department of Corrections and Rehabilitation Louisiana State University Health Sciences Center
Sacramento, California New Orleans, Louisiana
73: Children in the Juvenile Justice System 249: Enuresis

Amy Houtrow, MD, PhD, MPH, FAAP Yaron Ivan, MD, FAAP
Associate Professor of Pediatrics and Physical Medicine Fellow, Pediatric Emergency Medicine
and Rehabilitation Children’s Hospital of Pittsburgh of UPMC
Division of Pediatric Rehabilitation Medicine Pittsburgh, Pennsylvania
Department of Physical Medicine and Rehabilitation 266: Herpes Infections
School of Medicine
University of Pittsburgh Abieyuwa Iyare, MD
Pittsburgh, Pennsylvania General Academic Pediatrician
332: Spina Bifida The Children’s Hospital at Montefiore
Bronx, New York
Jonathan C. Howell, MD, PhD 97: Postnatal Assessment of Common Prenatal
Assistant Professor of Pediatrics Sonographic Findings
Division of Endocrinology
Cincinnati Children’s Hospital Medical Center Mary Anne Jackson, MD, FAAP
University of Cincinnati College of Medicine Professor of Pediatrics
Cincinnati, Ohio University of Missouri-Kansas City School
342: Turner Syndrome and Noonan Syndrome of Medicine
Division Director, Infectious Diseases
Sharon G. Humiston, MD, MPH, FAAP Children’s Mercy Hospital
Professor of Pediatrics Kansas City, Missouri
Children’s Mercy Hospital 280: Kawasaki Disease
University of Missouri-Kansas City School of Medicine
Kansas City, Missouri Timo Jahnukainen, MD, PhD
20: Immunizations Assistant Professor of Pediatrics
Department of Pediatric Nephrology and
Norman T. Ilowite, MD Transplantation
Professor of Pediatrics University of Helsinki
Albert Einstein College of Medicine Helsinki, Finland
Chief, Division of Pediatric Rheumatology 344: Urinary Tract Infections
The Children’s Hospital at Montefiore
Bronx, New York
173: Limp
Contributors xxiii

Amrish Jain, MD Nicholas Jospe, MD


Assistant Professor of Pediatrics Professor of Pediatrics
Division of Pediatric Nephrology and Hypertension Chief, Division of Pediatric Endocrinology
Wayne State University School of Medicine Golisano Children’s Hospital
Detroit, Michigan Department of Pediatrics
301: Oliguria and Anuria University of Rochester Medical Center
Rochester, New York
Ginger Janow, MD 270: Hyperthyroidism
Department of Pediatrics
Division of Rheumatology Stephen G. Kahler, MD
Joseph M. Sanzari Children’s Hospital Professor of Pediatrics
Hackensack, New Jersey Section of Genetics and Metabolism
173: Limp University of Arkansas for Medical Sciences
Little Rock, Arkansas
Asma Javed, MBBS, FAAP 29: Screening for Genetic-Metabolic Diseases
Assistant Professor of Pediatrics
Mayo Clinic Ronald Kallen, MD
Rochester, Minnesota Associate Professor of Clinical Pediatrics
241: Diabetes Mellitus Feinberg School of Medicine
Northwestern University
Parul Jayakar, MD, FACMG Chicago, Illinois
Director, Division of Genetics and Metabolism 322: Renal Tubular Acidosis
Director, Neurogenetics/Metabolic Program
Director, Miami Genetic Laboratories Deepak M. Kamat, MD, PhD, FAAP
Nicklaus Children’s Hospital Professor of Pediatrics
Miami, Florida Vice Chair for Education
281: Klinefelter Syndrome Department of Pediatrics
Wayne State University School of Medicine
Sandra H. Jee, MD, MPH, FAAP Designated Institutional Official
Associate Professor of Pediatrics Children’s Hospital of Michigan
Division of General Pediatrics Detroit, Michigan
University of Rochester Medical Center 316: Positional Deformational Plagiocephaly
Rochester, New York 321: Pyloric Stenosis
72: Children in Foster or Kinship Care
Nirupama Kannikeswaran, MBBS
Michael S. Jellinek, MD, FAAP Associate Professor of Pediatrics and Emergency
Professor of Psychiatry and of Pediatrics Medicine
Harvard Medical School Children’s Hospital of Michigan
Chief Executive Officer and Executive Vice President Wayne State University School of Medicine
Lahey Health, Community Network Detroit, Michigan
Burlington, Massachusetts 334: Sports Musculoskeletal Injuries
15: Pediatric History: Assessing Functioning and
Mental Health Vikramjit Kanwar, MRCP(UK), MBA, FAAP
Chief and Professor of Pediatrics
Renée R. Jenkins, MD, FAAP Division of Pediatric Hematology-Oncology
Professor and Chair Emerita Director, Melodies Center for Childhood Cancer and
Department of Pediatrics and Child Health Blood Disorders
Howard University College of Medicine Albany Medical Center
Washington, DC Albany, New York
79: Children in Poverty 59: Blood Products and Their Uses
Alain Joffe, MD, MPH, FAAP Vishal Subodhbhai Kapadia, MD, FAAP
Director, Student Health and Wellness Center Assistant Professor of Pediatrics
Johns Hopkins University Department of Pediatrics
Associate Professor of Pediatrics Division of Neonatal Perinatal Medicine
Johns Hopkins University School of Medicine University of Texas Southwestern Medical Center
Baltimore, Maryland Dallas, Texas
127: Amenorrhea 99: Neonatal Jaundice
204: Vaginal Bleeding
205: Vaginal Discharge Sebastian G. Kaplan, PhD
330: Sexually Transmitted Infections Associate Professor of Psychiatry
Department of Psychiatry and Behavioral Medicine
Brandon Johnson, MD Child and Adolescent Psychiatry Section
Assistant Professor of Ophthalmology and Visual Sciences Wake Forest School of Medicine
Albert Einstein College of Medicine Winston-Salem, North Carolina
Bronx, New York 31: Applying Behavior Change Science
214: Amblyopia and Strabismus
xxiv Contributors

Paul Kaplowitz, MD, PhD, FAAP John A. Kerner, Jr, MD, FAAP
Division of Endocrinology Professor of Pediatrics and Director of Nutrition
Children’s National Medical Center Director of Pediatric Gastroenterology Fellowship
School of Medicine and Health Sciences Pediatric GI, Hepatology and Nutrition
George Washington University Stanford University Medical Center
Washington, DC Stanford, California
193: Short Stature Medical Director, Children’s Home Pharmacy and the
Nutrition Support Team
Frederick J. Kaskel, MD, PhD, FAAP
Lucile Packard Children’s Hospital Stanford
Professor and Vice Chair of Pediatrics
Palo Alto, California
Albert Einstein College of Medicine
256: Gastrointestinal Allergy
Director, Division and Training Program in Pediatric
259: Gluten-Sensitive Enteropathy (Celiac Sprue)
Nephrology
The Children’s Hospital at Montefiore Jill Kerr, DNP, MPH
Bronx, New York Family Nurse Practitioner (Retired)
144: Dysuria Chapel Hill Carrboro City Schools Head Start
Dona Rani Kathirithamby, MD Carrboro, North Carolina
Pediatric Physiatrist 22: Promoting the Health of Young Children
Children’s Evaluation and Rehabilitation Center
The Children’s Hospital at Montefiore Unab I. Khan, MD, MS
Associate Professor of Rehabilitation Medicine Director of Health Sciences
Assistant Professor of Pediatrics Associate Professor of Pediatrics
Albert Einstein College of Medicine Warren Alpert School of Medicine
Bronx, New York Brown University
65: Pediatric Rehabilitation Providence, Rhode Island
121: Adolescent Sexuality
Harpreet Kaur, MD
Attending Neonatology David W. Kimberlin, MD, FAAP
Department of Pediatrics Professor and Vice Chair for Clinical and Translational
Saint Peter’s University Hospital Research
New Brunswick, New Jersey Co-Director, Division of Pediatric Infectious Diseases
93: Maternal Medical History Department of Pediatrics
94: Physical Examination of the Newborn The University of Alabama at Birmingham
Birmingham, Alabama
Martha Ann Keels, DDS, PhD 227: Chickenpox
Adjunct Associate Professor of Pediatrics
Duke University Medical Center Diana King, MD, FAAP
Durham, North Carolina Assistant Professor of Clinical Pediatrics
240: Dental Problems Albert Einstein College of Medicine
Attending Physician
Alex R. Kemper, MD, MPH, MS, FAAP Division of Pediatric Emergency Medicine
Professor of Pediatrics The Children’s Hospital at Montefiore
Division of Children’s Primary Care Bronx, New York
Duke University 169: Irritability and Fussiness
Durham, North Carolina
28: Vision Screening Robert A. King, MD
Kathi J. Kemper, MD, MPH, FAAP Professor of Child Psychiatry
Director, Integrative Health and Wellness Yale Child Study Center
The Ohio State University School of Medicine Yale University School of Medicine
Columbus, Ohio New Haven, Connecticut
57: Complementary and Integrative Medical Therapies 202: Tics

Jonette E. Keri, MD, PhD Genna W. Klein, MD


Associate Professor of Dermatology and Cutaneous Division of Pediatric Endocrinology
Surgery Joseph M. Sanzari Children’s Hospital
University of Miami Miller School of Medicine Hackensack University Medical Center
Miami, Florida Hackensack, New Jersey
219: Atopic Dermatitis 164: Hirsutism, Hypertrichosis, and Precocious Sexual
235: Contact Dermatitis Hair Development

Bryce A. Kerlin, MD Jonathan D. Klein, MD, MPH, FAAP


Associate Professor of Pediatrics Associate Executive Director
The Ohio State University School of Medicine American Academy of Pediatrics
Principal Investigator, Center for Clinical and Translational Elk Grove Village, Illinois
Research 120: Counseling Parents of Adolescents
The Research Institute at Nationwide Children’s Hospital
Michael D. Klein, MD, FACS, FAAP
Director, The Joan Fellowship in Pediatric Hemostasis-
Philippart Chair and Professor of Surgery
Thrombosis
Wayne State University School of Medicine
Division of Hematology/Oncology/BMT
Children’s Hospital of Michigan
Nationwide Children’s Hospital
Detroit, Michigan
Columbus, Ohio
347: Acute Surgical Abdomen
27: Screening for Anemia
Contributors xxv

Evelyn A. Kluka, MD, FAAP Richard E. Kreipe, MD, FAAP


Division Chief, Pediatric Otolaryngology Dr. Elizabeth McAnarney Professor of Pediatrics
Nemours Children’s Specialty Care Division of Adolescent Medicine
Pensacola, Florida Department of Pediatrics
339: Tonsillectomy and Adenoidectomy Golisano Children’s Hospital
University of Rochester Medical Center
Penelope Knapp, MD, FAAP Rochester, New York
Professor Emeritus of Psychiatry and Pediatrics 118: Challenges of Health Care Delivery to Adolescents
Department of Psychiatry and Behavioral Sciences
University of California, Davis Leonard R. Krilov, MD, FAAP
Davis, California Chief, Pediatric Infectious Disease
14: Pediatric History: Assessing the Social Environment Vice Chairman, Department of Pediatrics
Children’s Medical Center
Samuel A. Kocoshis, MD Winthrop University Hospital
Professor of Pediatrics Mineola, New York
University of Cincinnati College of Medicine Professor of Pediatrics
Medical Director, Intestinal Care Center and Intestinal State University of New York Stony Brook School of
Transplantation Medicine
Cincinnati Children’s Hospital Medical Center Stony Brook, New York
Cincinnati, Ohio 228: Chronic Fatigue Syndrome
306: Pancreatitis 275: Infectious Mononucleosis and Other Epstein-Barr
Viral Infections
Tsoline Kojaoghlanian, MD
Assistant Professor Lakshmanan Krishnamurti, MD
Department of Pediatrics Professor of Pediatrics
Division of Infectious Diseases Emory University
The Children’s Hospital at Montefiore Joseph Kuchenmeister/Aflac Field Force Chair
Bronx, New York Director BMT
102: The Newborn at Risk for Infection Aflac Cancer and Blood Disorders Center
Children’s Healthcare of Atlanta
Faye Kokotos, MD, FAAP Atlanta, Georgia
Assistant Professor of Clinical Pediatrics 279: Iron-Deficiency Anemia
Division of General Pediatrics
The Children’s Hospital at Montefiore Robert K. Kritzler, MD
Bronx, New York Deputy Chief Medical Officer
87: Care of the Newborn After Delivery Johns Hopkins Healthcare LLC
Assistant Professor
E. Anders Kolb, MD Johns Hopkins University
Vice Chairman for Research, Department of Pediatrics Glen Burnie, Maryland
Nemours Alfred I. DuPont 185: Puberty: Normal and Abnormal
Hospital for Children
Associate Professor Daniel Krowchuk, MD, FAAP
Thomas Jefferson University, Jefferson Medical College Department of Pediatrics
Adjunct Professor Wake Forest School of Medicine
University of Delaware, Center for Bioinformatics and Winston-Salem, North Carolina
Computational Biology 186: Rash
Wilmington, Delaware 242: Diaper Rash
285: Leukemias
Elizabeth M. Kryszak, PhD
David J. Kolko, PhD, ABPP Psychologist
Professor of Psychiatry, Psychology, Pediatrics, and Child Development Center at Nationwide Children’s
Clinical and Translational Science Hospital
University of Pittsburgh School of Medicine Clinical Assistant Professor
Director, Special Services Unit Departments of Pediatrics and Psychology
Western Psychiatric Institute and Clinic The Ohio State University School of Medicine
Pittsburgh, Pennsylvania Columbus, Ohio
317: Post-traumatic Stress Disorder 221: Autism Spectrum Disorder
Sabine Kost-Byerly, MD, FAAP Shobana Kubendran, MBBS, MS, CGC
Associate Professor of Anesthesiology and Critical Care Genetic Counselor
Medicine Assistant Professor
Director, Pediatric Pain Service Kansas University School of Medicine
Johns Hopkins Charlotte R. Bloomberg Children’s Center Wichita, Kansas
Baltimore, Maryland 29: Screening for Genetic-Metabolic Diseases
55: Managing Chronic Pain in Children
Zuzanna Kubicka, MD
Jonathan B. Kotch, MD, MPH, FAAP Department of Newborn Medicine
Research Professor Boston Children’s Hospital
University of North Carolina Gillings School of Global Boston, Massachusetts
Public Health 105: Transient Metabolic Disturbances in
Chapel Hill, North Carolina the Newborn
22: Promoting the Health of Young Children
xxvi Contributors

Erik Langenau, DO, MS, FAAP Laurel K. Leslie, MD, MPH, FAAP
Chief Academic Technology Officer Professor of Pediatrics and Medicine
Philadelphia College of Osteopathic Medicine Tufts University School of Medicine
Philadelphia, Pennsylvania Boston, Massachusetts
180: Odor (Unusual Urine and Body) 220: Attention-deficit/Hyperactivity Disorder

John D. Lantos, MD John M. Leventhal, MD, FAAP


Professor of Pediatrics Professor of Pediatrics
University of Missouri-Kansas City School of Medicine Yale University School of Medicine
Director, Children’s Mercy Bioethics Center Director of the Child Abuse Programs and Child Abuse
Children’s Mercy Hospital Prevention Programs
Kansas City, Missouri Yale-New Haven Children’s Hospital
11: Ethical and Legal Issues for Primary Care Physicians New Haven, Connecticut
329: Sexual Abuse of Children
Danielle Laraque, MD, FAAP
Chair, Department of Pediatrics, Maimonides Medical Rebecca Levin, MPH
Center Strategic Director, Injury Prevention and
Vice President, Maimonides Infants and Children’s Research Center
Hospital of Brooklyn Ann and Robert H. Lurie Children’s Hospital
Professor of Pediatrics of Chicago
Albert Einstein College of Medicine Chicago, Illinois
Yeshiva University 42: Safety and Injury Prevention
Brooklyn, New York
210: Adjustment Disorder in Children and Adolescents Terry L. Levin, MD
Professor of Clinical Radiology
Gitte Larsen, MD, MPH, FAAP The Children’s Hospital at Montefiore
Professor of Pediatrics Bronx, New York
Associate Director, Quality Improvement and Patient 18: Pediatric Imaging
Safety
Primary Children’s Hospital Michael A. Levine, MD, FAAP, MACE, FACP
Division of Pediatric Critical Care Chief, Division of Endocrinology and Diabetes
University of Utah Medical Center The Children’s Hospital of Philadelphia
Salt Lake City, Utah Professor of Pediatrics and Medicine
246: Drug Interactions and Adverse Effects University of Pennsylvania Perelman School
of Medicine
Judith B. Lavrich, MD Philadelphia, Pennsylvania
Associate Surgeon 271: Hypocalcemia, Hypercalcemia, and
Department of Pediatric Ophthalmology and Ocular Hypercalciuria
Genetics
Wills Eye Hospital Marc A. Levitt, MD, FAAP
Clinical Instructor Surgical Director
Sidney Kimmel Medical College Center for Colorectal and Pelvic Reconstruction at
Thomas Jefferson University Nationwide Children’s Hospital
Philadelphia, Pennsylvania Professor of Surgery
188: Red Eye/Pink Eye The Ohio State University School of Medicine
Columbus, Ohio
Taiwo Lawal, MD 232: Colorectal Disorders
Lecturer and Pediatric Surgeon
Division of Pediatric Surgery Adam S. Levy, MD
University of Ibadan and University College Hospital Associate Professor of Clinical Pediatrics
Ibadan, Nigeria The Children’s Hospital at Montefiore
232: Colorectal Disorders Albert Einstein College of Medicine
Bronx, New York
Claire M.A. LeBlanc, MD, FAAP 128: Anemia and Pallor
Associate Professor of Pediatrics 181: Petechiae and Purpura
Division of Rheumatology
McGill University Paul A. Levy, MD, FAAP
Montreal, Quebec, Canada Attending Geneticist
39: Physical Activity Assistant Professor of Pediatrics and Pathology
The Children’s Hospital at Montefiore
Minou Le-Carlson, MD Bronx, New York
Pediatric Gastroenterology 145: Edema
Kaiser Permanente
Oakland, California Sharon Levy, MD, MPH, FAAP
256: Gastrointestinal Allergy Director, Adolescent Substance Abuse Program
Boston Children’s Hospital
Lori Legano, MD, FAAP Assistant Professor of Pediatrics
Assistant Professor of Pediatrics Harvard Medical School
New York University School of Medicine Boston, Massachusetts
New York, New York 198: Substance Use: Initial Approach in Primary Care
71: Children of Divorce 336: Substance Use Disorders
Contributors xxvii

Samuel M. Libber, MD Robert M. Lober, MD, PhD


Department of Pediatrics Assistant Professor
Johns Hopkins University School of Medicine Dayton Children’s Hospital, Division
Baltimore, Maryland of Neurosurgery
182: Polyuria Wright State University Boonshoft School
of Medicine
Michael Light, MD, FAAP Dayton, Ohio
Pediatric Pulmonologist 269: Hydrocephalus
University of Florida Health
Gainesville, Florida Ann M. Loeffler, MD
315: Pneumonia Curry International Tuberculosis Center
Randall Children’s Hospital at Legacy Emanuel
Jenifer R. Lightdale, MD, MPH, FAAP Portland, Oregon
Division Chief, Pediatric Gastroenterology 341: Tuberculosis
UMass Memorial Children’s Medical Center
Professor of Pediatrics Anthony M. Loizides, MD
University of Massachusetts Medical School Assistant Professor of Pediatrics
Worcester, Massachusetts Albert Einstein College of Medicine
255: Gastroesophageal Reflux Disease Attending Physician
Division of Pediatric Gastroenterology and Nutrition
Meghan McAuliffe Lines, PhD The Children’s Hospital at Montefiore
Assistant Professor of Pediatrics Bronx, New York
Clinical Director, Division of Behavioral Health 125: Abdominal Pain
Nemours Al DuPont Hospital for Children
Philadelphia, Pennsylvania Christina Long, DO
Sidney Kimmel Medical College Assistant Professor of Pediatrics
Thomas Jefferson University Uniformed Services University of the Health Sciences
Wilmington, Delaware Bethesda, Maryland
61: Psychosocial Therapies 100: Respiratory Distress and Breathing Disorders in the
Newborn
Steven E. Lipshultz, MD, FAAP, FAHA 113: Discharge Planning for the High-Risk Newborn
Schotanus Family Endowed Chair of Pediatrics Requiring Intensive Care
Carman and Ann Adams Endowed Chair in Pediatric
Research Dominique Long, MD
Professor and Chair, Carman and Ann Adams Department Division of Pediatric Endocrinology
of Pediatrics Department of Pediatrics
Professor of Medicine (Cardiology), Oncology, Obstetrics/ Johns Hopkins Children’s Center
Gynecology, Molecular Biology/Genetics, Family Baltimore, Maryland
Medicine/Public Health Sciences, and Pharmacology 185: Puberty: Normal and Abnormal
Member, Center for Urban Responses to Environmental
Lindsey Loomba-Albrecht, MD
Stressors
Assistant Professor of Pediatrics
Wayne State University School of Medicine
Section of Endocrinology
President, University Pediatricians
University of California, Davis
Interim Director, Children’s Research Center of Michigan
Davis, California
Pediatrician-in-Chief, Children’s Hospital of Michigan
243: Disorders of Sex Development
Specialist-in-Chief, Department of Pediatrics, Detroit
Medical Center Andrew M. Luks, MD
Scientific Member, Karmanos Cancer Institute, an NCI- Associate Professor of Medicine
designated Comprehensive Cancer Center Division of Pulmonary and Critical Care Medicine
Detroit, Michigan University of Washington
163: High Blood Pressure Seattle, Washington
286: Lipid Abnormalities 213: Altitude Sickness
361: Heart Failure
Angela Lumba-Brown, MD, FAAP
George A. Little, MD, FAAP
Pediatric Emergency Medicine
Active Emeritus Professor of Pediatrics and Obstetrics and
Washington University School of Medicine
Gynecology
St. Louis, Missouri
Geisel School of Medicine at Dartmouth College
357: Drug Overdose
Hanover, New Hampshire
80: Perinatal Preventive Care: Fetal Assessment Hema N. Magge, MD, MS
105: Transient Metabolic Disturbances in the Newborn Associate Physician, Division of Global
117: Support for Families Whose Infant Is Sick or Dying Health Equity
Brigham and Women’s Hospital
Mark N. Lobato, MD Adjunct Staff, Division of General Pediatrics
Senior Medical Epidemiologist Boston Children’s Hospital
Division of Tuberculosis Elimination Boston, Massachusetts
National Center for HIV, Hepatitis, STD, and TB 69: Caring for Families New to the United States
Prevention
Centers for Disease Control and Prevention
Atlanta, Georgia
341: Tuberculosis
xxviii Contributors

Prashant Mahajan, MD, MPH, MBA, FAAP Tej K. Mattoo, DCH, MD, FRCP (UK), FAAP
Division Chief and Research Director Chief, Division of Pediatric Nephrology
Pediatric Emergency Medicine Professor of Pediatrics
Professor of Pediatrics and Emergency Medicine Wayne State University School of Medicine
Director Center for Quality and Innovation Detroit, Michigan
Carman and Ann Adam’s Department of Pediatrics 301: Oliguria and Anuria
Children’s Hospital of Michigan
Detroit, Michigan Teri Jo Mauch, MD, PhD, FAAP, FASN
58: Fluids, Electrolytes, and Acid-Base Composition Professor and Section Chief, Pediatric Nephrology
353: Dehydration University of Nebraska Medical Center
360: Head Injuries Omaha, Nebraska
97: Postnatal Assessment of Common Prenatal
Edna Mancilla, MD Sonographic Findings
Assistant Professor of Clinical Pediatrics
Perelman School of Medicine Sophia L. Maurasse, MD
University of Pennsylvania Assistant Medical Director
Division of Endocrinology 3East DBT-Continuum
The Children’s Hospital of Philadelphia McLean Hospital
Philadelphia, Pennsylvania Belmont, Massachusetts
271: Hypocalcemia, Hypercalcemia, and Hypercalciuria 302: Oppositional Defiant Disorder

Kalyani Marathe, MD, MPH, FAAD Anne May, MD, FAAP


Attending Physician, Pediatric Dermatology Assistant Professor of Clinical Pediatrics
Children’s National Health System Nationwide Children’s Hospital
Clinical Assistant Professor The Ohio State University School of Medicine
School of Medicine and Health Sciences Columbus, Ohio
George Washington University 194: Sleep Disturbances (Nonspecific)
Washington, DC
222: Bacterial Skin Infections Jay H. Mayefsky, MD, MPH, FAAP
Professor of Pediatrics and Family and Preventive
Michael G. Marcus, MD Medicine
Vice Chair, Pediatric Ambulatory Network Rosalind Franklin University of Medicine and Science
Director, Division of Pulmonary Medicine and Pediatric Associate Medical Director
Allergy and Immunology School Based Health Centers
Maimonides Infants and Children’s Hospital Heartland Health Centers
Brooklyn, New York Chicago, Illinois
135: Cough 143: Dyspnea
Ronald V. Marino, DO, MPH, FAAP Jeanne W. McAllister, BSN, MS, MHA
Professor of Pediatrics Associate Research Professor of Pediatrics
Stony Brook University Medical School Indiana University School of Medicine
College of Osteopathic Medicine at the New York Institute Indiana Children’s Health Service Research
of Technology Indianapolis, Indiana
Associate Chairman, Department of Pediatrics 6: Medical Home Collaborative Care
Winthrop University Hospital 7: Planned Coordinated Care to Support the Medical Home
Mineola, New York
Pediatric Residency Director Margaret C. McBride, MD, FAAN, FAAP
Good Samaritan Hospital Medical Center Professor of Pediatrics, Northeast Ohio Medical University
West Islip, New York NeuroDevelopmental Science Center, Division of
189: School Absenteeism and School Refusal Neurology
Akron Children’s Hospital
Robert W. Marion, MD
Akron, Ohio
Chief, Division of Genetics
327: Seizure Disorders
Professor of Pediatrics and Obstetrics and Gynecology
374: Status Epilepticus
and Women’s Health
The Children’s Hospital at Montefiore Edith A. McCarthy, MD
Albert Einstein College of Medicine 81: Assisted Reproductive Technologies, Multiple Births,
Bronx, New York and Pregnancy Outcomes
96: Common Congenital Anomalies
148: Facial Dysmorphism Michael A. McCulloch, MD
343: Umbilical Anomalies Assistant Professor
Nemours Cardiac Center
Bruce C. Marshall, MD, MMM AI DuPont Hospital for Children
Senior Vice President for Clinical Affairs Wilmington, Delaware
Cystic Fibrosis Foundation 234: Congenital and Acquired Heart Disease
Bethesda, Maryland
239: Cystic Fibrosis Alicia K. McFarren, MD
Department of Pediatric Hematology, Oncology, and Blood
Bethany Marston, MD, FAAP and Marrow Transplantation
Department of Pediatrics and Medicine Children’s Hospital Los Angeles
University of Rochester Medical Center Los Angeles, California
Rochester, New York 128: Anemia and Pallor
171: Joint Pain
Contributors xxix

Nancy McGreal, MD Rachel Y. Moon, MD, FAAP


Assistant Professor of Medicine and Pediatrics Professor of Pediatrics
Division of Gastroenterology University of Virginia School of Medicine
Duke University Medical Center Charlottesville, Virginia
Durham, North Carolina 337: Sudden Unexpected Infant Death
174: Loss of Appetite
206: Vomiting Timothy R. Moore, PhD, LP, BCBA-D
Clinical Director
Thomas K. McInerny, MD, FAAP Minnesota Life Bridge
Professor Emeritus Cambridge, Minnesota
Department of Pediatrics 191: Self-harm
University of Rochester Medical Center
Rochester, New York Robert E. Morris, MD, FAAP
2: Practice Organization Professor Emeritus
Department of Pediatrics
Patricia McQuilkin, MD, FAAP Mattel Children’s Hospital
Clinical Associate Professor of Pediatrics University of California, Los Angeles
Division of General Pediatrics Los Angeles, California
University of Massachusetts Medical Center 73: Children in the Juvenile Justice System
Worcester, Massachusetts
78: Homeless Children William Moss, MD, MPH
Professor
H. Cody Meissner, MD, FAAP Department of Epidemiology, International
Professor of Pediatrics Health and Molecular Microbiology and
Tufts University School of Medicine Immunology
Boston, Massachusetts Johns Hopkins Bloomberg School of Public Health
287: Lyme Disease Baltimore, Maryland
268: Human Immunodeficiency Virus Infection and
Asuncion Mejias, MD, PhD, MSCS Acquired Immunodeficiency Syndrome
Associate Professor of Pediatrics, Division of Infectious
Diseases Richard T. Moxley III, MD
The Ohio State University School of Medicine Professor of Neurology
Principal Investigator, Center for Vaccines and Immunity Department of Neurology
The Research Institute at Nationwide Children’s Hospital University of Rochester Medical Center
Columbus, Ohio Rochester, New York
267: Human Herpesvirus-6 and Human Herpesvirus-7 293: Muscular Dystrophy
Infections
Daniel W. Mruzek, PhD
Sarah E. Messiah, PhD, MPH Associate Professor of Pediatrics
Research Associate Professor of Pediatrics University of Rochester Medical Center
University of Miami Miller School of Medicine Rochester, New York
Miami, Florida 49: Discussing Serious Symptoms, Results, and
163: High Blood Pressure Diagnoses With the Patient and Family
286: Lipid Abnormalities
James A. Mulick, PhD, BCBA-D
Ryan S. Miller, MD Professor Emeritus of Pediatrics
Division of Pediatric Endocrinology The Ohio State University School of Medicine
Department of Pediatrics Columbus, Ohio
Johns Hopkins University School of Medicine 221: Autism Spectrum Disorder
Baltimore, Maryland
182: Polyuria Upender K. Munshi, MBBS, MD, FAAP
Associate Professor of Pediatrics, Neonatology
Tracie L. Miller, MD Division
Professor of Pediatrics and Epidemiology Children’s Hospital at Albany Medical Center
University of Miami Miller School of Medicine Albany, New York
Miami, Florida 110: Identifying the Newborn Who Requires
286: Lipid Abnormalities Specialized Care

Jeffrey S. Mino, MD Nancy Murphy, MD, FAAP, FAAPMR


Resident, Department of General Surgery Professor of Pediatrics
Cleveland Clinic Foundation Division Chief, Pediatric Physical Medicine and
Cleveland, Ohio Rehabilitation
257: Gastrointestinal Obstruction University of Utah Department of Pediatrics
309: Pectus Excavatum and Pectus Carinatum Salt Lake City, Utah
226: Cerebral Palsy
Rosebel Monteiro, MD
Resident, Department of General Surgery Dennis L. Murray, MD, FAAP, PIDSA
The Cleveland Clinic Foundation Professor Emeritus of Pediatrics
Cleveland, Ohio Chief, Pediatric Infectious Diseases (Retired)
257: Gastrointestinal Obstruction Georgia Regents University
309: Pectus Excavatum and Pectus Carinatum Augusta, Georgia
236: Contagious Exanthematous Diseases
xxx Contributors

Suhas M. Nafday, MD, MRCP(Ire), DCH, FAAP Linda S. Nield, MD, FAAP
Associate Professor of Clinical Pediatrics Professor of Pediatrics and Medical Education
Albert Einstein College of Medicine Assistant Dean for Admissions
Director, Newborn Services and Therapeutic Hypothermia West Virginia University School of Medicine
Program Morgantown, West Virginia
Chair, Neonatal Performance Improvement and Co-Chair, 219: Atopic Dermatitis
Patient Safety 235: Contact Dermatitis
The Children’s Hospital at Montefiore 282: Labial Adhesions
Bronx, New York 335: Stomatitis
98: Abnormalities of Fetal Growth
100: Respiratory Distress and Breathing Disorders in the Michelle L. Niescierenko, MD
Newborn Instructor, Pediatrics and Emergency Medicine
Harvard Medical School
Gaurav Nanda, MD Boston, Massachusetts
Division of Pediatric Nephrology 248: Enterovirus and Evolving Infections
Children’s Hospital of Pittsburgh
Pittsburgh, Pennsylvania A. Barbara Oettgen, MD, MPH, FAAP
344: Urinary Tract Infections Assistant Professor of Pediatrics
Wayne State University School of Medicine
Joshua P. Needleman, MD Children’s Hospital of Michigan
Maimonides Medical Center Detroit, Michigan
Brooklyn, New York 312: Phimosis
Associate Professor of Clinical Pediatrics
Albert Einstein College of Medicine Mary O’Hara, MD, FAAO, FACS, FAAP
Bronx, New York Professor of Ophthalmology and Pediatrics
208: Wheezing University of California, Davis
Sacramento, California
Robert Needlman, MD, FAAP 214: Amblyopia and Strabismus
Professor of Pediatrics
Case Western Reserve University School Alexander L. Okun, MD, FAAP
of Medicine Medical Director, New Alternatives for Children
MetroHealth Medical Center New York, New York
Cleveland, Ohio 67: Palliative, End-of-Life, and Bereavement Care
74: Children in Self-care
Karen Olness, MD, FAAP
Leonard B. Nelson, MD Professor Emerita of Pediatrics, Global Health and
Director of the Strabismus Center Diseases
Wills Eye Hospital Case Western Reserve University School of Medicine
Co-Director Pediatric Ophthalmology and Ocular Cleveland, Ohio
Genetics Department 48: Providing Culturally Effective Care
Wills Eye Hospital 56: Self-regulation Therapies: Hypnosis and Biofeedback
Philadelphia, Pennsylvania
214: Amblyopia and Strabismus Katherine Atienza Orellana, DO
Pediatric Gastroenterology
Sheri L. Nemerofsky, MD, FAAP Valley Medical Group
Assistant Professor of Pediatrics Ramsey, New Jersey
Department of Pediatrics 125: Abdominal Pain
Division of Neonatology
The Children’s Hospital at Montefiore Craig C. Orlowski, MD
Albert Einstein College of Medicine Associate Professor of Clinical Pediatrics
Bronx, New York Division of Pediatric Endocrinology
90: Care of the Late Preterm Infant University of Rochester School of Medicine and Dentistry
97: Postnatal Assessment of Common Prenatal Rochester, New York
Sonographic Findings 273: Hypothyroidism

Daniel R. Neuspiel, MD, MPH, FAAP Enrique M. Ostrea, Jr, MD


Clinical Professor of Pediatrics Professor of Pediatrics
University of North Carolina School of Medicine Department of Pediatrics
Levine Children’s Hospital Hutzel Women’s Hospital
Charlotte, North Carolina Children’s Hospital of Michigan
288: Medical Errors, Adverse Events, and Wayne State University School of Medicine
Patient Safety Detroit, Michigan
104: Prenatal Drug Use: Neonatal Effects and the Drug
Hiep T. Nguyen, MD Withdrawal Syndrome
Banner Children’s Specialists–Urology
Cardon Children’s Medical Center Philip Overby, MD, DABPN
Mesa, Arizona Department of Pediatrics and Neurology
299: Obstructive Uropathy and Vesicoureteral New York Medical College
Reflux Valhalla, New York
130: Ataxia
Contributors xxxi

Philip O. Ozuah, MD, PhD Deborah Persaud, MD


Professor of Pediatrics Professor of Pediatrics
Professor of Epidemiology and Population Health Division of Pediatric Infectious Diseases
Albert Einstein College of Medicine Johns Hopkins University School of Medicine
President Baltimore, Maryland
Montefiore Health System 268: Human Immunodeficiency Virus Infection and
Bronx, New York Acquired Immunodeficiency Syndrome
151: Fatigue and Weakness
162: Hepatomegaly Randall A. Phelps, MD, PhD, FAAP
196: Splenomegaly Assistant Professor of Pediatrics
203: Torticollis Child Development and Rehabilitation Center
Institute on Development and Disability
Donna M. Pacicca, MD, FAAP Oregon Health and Science University
Associate Professor of Orthopaedic Surgery Eugene, Oregon
Adjunct Professor of Oral and Craniofacial Sciences 278: Intellectual Disability
Children’s Mercy Hospital
University of Missouri-Kansas City School of Medicine Joaquim M. B. Pinheiro, MD, MPH, FAAP
Kansas City, Missouri Professor of Pediatrics
303: Osteochondroses Director, Neonatal-Perinatal Medicine Fellowship Program
Division of Neonatology
Lane S. Palmer, MD, FACS Albany Medical Center
Division of Pediatric Urology Albany, New York
Cohen Children’s Medical Center of New York 109: Assessment and Stabilization at Delivery
Hofstra Northwell School of Medicine at Hofstra
University Steven W. Pipe, MD
Long Island, New York Professor of Pediatrics and Pathology
190: Scrotal Swelling and Pain Director, Pediatric Hematology and Oncology
University of Michigan
Debra H. Pan, MD Ann Arbor, Michigan
Assistant Professor of Pediatrics 355: Disseminated Intravascular Coagulation
Albert Einstein College of Medicine
Attending Physician Amy Pirretti, MS
Division of Pediatric Gastroenterology and Nutrition 32: Family Support
The Children’s Hospital at Montefiore
Bronx, New York Leslie Plotnick, MD
170: Jaundice Professor, Pediatric Endocrinology
Department of Pediatrics
Sanjay R. Parikh, MD, FACS Johns Hopkins Children’s Center
Division of Pediatric Otolaryngology Baltimore, Maryland
Seattle Children’s Hospital 182: Polyuria
Associate Professor 185: Puberty: Normal and Abnormal
Department of Otolaryngology–Head and Neck
Surgery Gregory A. Plotnikoff, MD, MTS
University of Washington Penny George Institute for Health and Healing
Seattle, Washington Allina Health
165: Hoarseness Minneapolis, Minnesota
251: Foreign Bodies of the Ear, Nose, Airway, and 57: Complementary and Integrative Medical
Esophagus Therapies

Sonia Partap, MD, MS, FAAP Veronika Polishchuk, MD


Associate Professor Division of Pediatric Hematology/Oncology
Department of Neurology The Children’s Hospital at Montefiore
Stanford University Bronx, New York
Palo Alto, California 285: Leukemias
269: Hydrocephalus
Gregory E. Prazar, MD, FAAP
Alberto Pena, MD, FAAP Elliot Pediatric Specialists
Clinical Professor of Surgery New Hampshire Hospital for Children
Founder and Director, Colorectal Center for Children Manchester, New Hampshire
Cincinnati Children’s Hospital Medical Center 201: Temper Tantrums and Breath-holding Spells
University of Cincinnati College of Medicine 237: Conversion Reactions and Hysteria
Cincinnati, Ohio
Nathan Price, MD, FAAP
232: Colorectal Disorders
Clinical Assistant Professor
James M. Perrin, MD, FAAP Stead Family Department of Pediatrics
John C. Robinson Chair in Pediatrics Division of Pediatric Infectious Diseases
MassGeneral Hospital for Children University of Iowa
Professor of Pediatrics Iowa City, Iowa
Harvard Medical School 227: Chickenpox
Boston, Massachusetts
32: Family Support
xxxii Contributors

David Pruitt, MD Prema Ramaswamy, MD


Professor of Psychiatry and Pediatrics Director, Division of Pediatric Cardiology
Director, Division Child and Adolescent Psychiatry Maimonides Infants and Children’s Hospital of Brooklyn
University of Maryland School of Medicine Brooklyn, New York
Baltimore, Maryland 200: Syncope
62: Psychotropic Medications in Primary
Care Pediatrics Cynthia Rand, MD, MPH, FAAP
Associate Professor, Pediatrics
E. Rebecca Pschirrer, MD, MPH Division of General Pediatrics
Associate Professor of OB/GYN and Radiology University of Rochester School of Medicine and Dentistry
Geisel School of Medicine at Dartmouth College Rochester, New York
Hanover, New Hampshire 20: Immunizations
Clerkship Director of OB/GYN
Director of Obstetric Ultrasound and Prenatal Rajesh C. Rao, MD, FAAP
Diagnosis Professor of Ophthalmology
Division of Maternal Fetal Medicine Section Head, Pediatric Ophthalmology
Dartmouth-Hitchcock Medical Center Oakland University William Beaumont School of Medicine
Lebanon, New Hampshire Royal Oak, Michigan
80: Perinatal Preventive Care: Fetal Assessment 300: Ocular Trauma

Oscar H. Purugganan, MD, MPH, FAAP Jawhar Rawwas, MD


Assistant Professor of Pediatrics Pediatric Hematology and Oncology
Department of Pediatrics Children’s Hospitals and Clinics of Minnesota
New York Presbyterian/Columbia University Medical Minneapolis, Minnesota
Center 274: Immune (Idiopathic) Thrombocytopenia Purpura
New York, New York
176: Macrocephaly Sushma Reddy, MD
178: Microcephaly Assistant Professor of Pediatrics
Division of Pediatric Cardiology
Nadia K. Qureshi, MD Stanford University
Assistant Professor of Pediatrics Stanford, California
Division of Pediatrics 321: Pyloric Stenosis
Loyola University Medical Center
Chicago, Illinois Jennifer L. Reeve, MD, PhD, FAAP
254: Fungal Infections (Systemic) Assistant Professor of Dermatology and Pediatrics
University of Michigan
Andrew D. Racine, MD, PhD, FAAP Ann Arbor, Michigan
Senior Vice President and Chief Medical Officer 320: Psoriasis
Montefiore Medical Center
Executive Director, Montefiore Medical Group Gloria Reeves, MD
Bronx, New York Associate Professor
149: Failure to Thrive: Pediatric Undernutrition Division of Child and Adolescent Psychiatry
University of Maryland School of Medicine
Yaseen Rafee, MD Baltimore, Maryland
Assistant Professor of Pediatrics 62: Psychotropic Medications in Primary Care Pediatrics
Hurley Children’s Hospital
Michigan State University, College of Human Kimberly J. Reidy, MD
Medicine Assistant Professor of Pediatrics
East Lansing, Michigan Division of Pediatric Nephrology
308: Parasitic Infections The Children’s Hospital at Montefiore
Bronx, New York
Keyvan Rafei, MD 160: Hematuria
Medical Director, KinderMender Pediatric Centers
Columbia, Maryland Marina Reznik, MD, MS
217: Apparent Life-Threatening Events Associate Professor of Pediatrics
Department of Pediatrics
Jason R. Rafferty, MD, MPH, EdM The Children’s Hospital at Montefiore
Triple Board Resident Albert Einstein College of Medicine
Department of Psychiatry and Human Behavior Bronx, New York
Brown University 151: Fatigue and Weakness
Providence, Rhode Island 162: Hepatomegaly
78: Homeless Children 196: Splenomegaly

Madhvi Rajpurkar, MD Robert L. Ricca, MD


Associate Professor Assistant Professor of Surgery
Carman and Ann Adams Department of Pediatrics Division of Pediatric Surgery
Wayne State University School of Medicine Naval Medical Center Portsmouth
Children’s Hospital of Michigan Portsmouth, Virginia
Detroit, Michigan 359: Esophageal Caustic Injury
59: Blood Products and Their Uses
230: Coagulation Disorders
Contributors xxxiii

Mark A. Riddle, MD Orna Rosen, MD, FAAP


Professor of Psychiatry and Pediatrics Program Advisor
Johns Hopkins University School of Medicine The Children’s Hospital at Montefiore
Baltimore, Maryland Weiler Hospital
62: Psychotropic Medications in Primary Care Pediatrics Division of Neonatology
Bronx, New York
Angel Rios, MD, FAAP 96: Common Congenital Anomalies
Professor of Pediatrics
Director of Neonatology Maris Rosenberg, MD
Department of Pediatrics Children’s Evaluation and Rehabilitation Center
Division of Neonatology Department of Pediatrics
The Children’s Hospital at the Albany Medical Center Albert Einstein College of Medicine
Albany, New York The Children’s Hospital at Montefiore
106: Specific Congenital Metabolic Diseases Bronx, New York
65: Pediatric Rehabilitation
Yolanda Rivas, MD 195: Speech and Language Concerns
Assistant Professor of Pediatrics
Albert Einstein College of Medicine Lainie Friedman Ross, MD, PhD, FAAP
Attending Physician Carolyn and Matthew Bucksbaum Professor of Clinical
Division of Pediatric Gastroenterology and Nutrition Ethics
The Children’s Hospital at Montefiore Professor
Bronx, New York Departments of Pediatrics, Medicine, Surgery and the
170: Jaundice College
Associate Director, MacLean Center for Clinical Medical
Ruby F. Rivera, MD, FAAP Ethics
Assistant Professor of Pediatrics University of Chicago
Albert Einstein College of Medicine Chicago, Illinois
Attending Physician 11: Ethical and Legal Issues for the Primary Care Physician
Division of Pediatric Emergency Medicine
The Children’s Hospital at Montefiore Michael Roth, MD
Bronx, New York Assistant Professor of Pediatrics
140: Dizziness and Vertigo Division of Pediatric Hematology, Oncology, Marrow and
Blood Cell Transplantation
John D. Roarty, MD, MPH, FAAP The Children’s Hospital at Montefiore
Chief, Department of Ophthalmology Albert Einstein College of Medicine
Children’s Hospital of Michigan Bronx, New York
Associate Professor of Ophthalmology 285: Leukemias
Wayne State University School of Medicine
Detroit, Michigan Ann Rothpletz, PhD, CCC-A
300: Ocular Trauma Assistant Professor
Department of Otolaryngology–Head and Neck Surgery
Brett W. Robbins, MD, FAAP and Communicative Disorders
Director, Med-Peds Residency Program University of Louisville
Chief, Adolescent Medicine Louisville, Kentucky
University of Rochester Medical Center 158: Hearing Loss
Rochester, New York
4: Evidence-based Medicine Arlene A. Rozzelle, MD, FACS, FAAP
Chief, Plastic and Reconstructive Surgery
Sarah M. Roddy, MD, FAAP Director, Cleft/Craniofacial Team
Associate Professor of Pediatrics and Neurology Director, Vascular Anomalies Team
Associate Dean for Admissions Children’s Hospital of Michigan
Loma Linda University School of Medicine Associate Professor
Loma Linda, California Wayne State University School of Medicine
179: Nonconvulsive Periodic Disorders Detroit, Michigan
327: Seizure Disorders 229: Cleft Lip and Cleft Palate
374: Status Epilepticus
Paolo G. Rusconi, MD
Victoria W. Rogers, MD, FAAP Associate Professor of Pediatrics
Director, Let’s Go! Program Berenson Chair in Pediatric Cardiology
Assistant Clinical Professor, Pediatrics, Tufts University Medical Director
School of Medicine Pediatric Heart Failure and Transplant
The Barbara Bush Children’s Hospital at Maine Medical University of Miami Miller School of Medicine
Center Miami, Florida
Portland, Maine 361: Heart Failure
5: Quality Improvement in Practice
Sarah Rush, MD
Chokechai Rongkavilit, MD Director, Pediatric Neuro-Oncology
Professor Akron Children’s Hospital
Division of Pediatric Infectious Diseases Akron, Ohio
Wayne State University School of Medicine 223: Brain Tumors
Detroit, Michigan
248: Enterovirus and Evolving Infections
340: Toxic Shock Syndrome
xxxiv Contributors

Francis E. Rushton, MD, FAAP Richard M. Sarles, MD


Clinical Professor of Pediatrics Professor of Child and Adolescent Psychiatry and
University of South Carolina Pediatrics (Retired)
Columbia, South Carolina University of Maryland School of Medicine
21: The Essential Role of the Primary Care Baltimore, Maryland
Pediatrician 192: Self-stimulating Behaviors

Camilla Sabella, MD, FAAP Sharada A. Sarnaik, MD


Associate Professor of Pediatrics Director, Comprehensive Sickle Cell Center
Director, Center for Pediatric Infectious Diseases Children’s Hospital of Michigan
Vice Chair, Education, Pediatric Institute Professor of Pediatrics
Cleveland Clinic Children’s Wayne State University School of Medicine
Cleveland, Ohio Detroit, Michigan
310: Pertussis (Whooping Cough) 262: Hemoglobinopathies and Sickle Cell Disease

Shehzad Ahmed Saeed, MD, FAAP, FACS, FRCS Anirudh Saronwala, MD, MS, FAAP
Professor of Pediatrics Pediatric Resident
Division of Gastroenterology, Hepatology and Kansas University School of Medicine
Nutrition Wichita, Kansas
University of Cincinnati School of Medicine 29: Screening for Genetic-Metabolic Diseases
Clinical Director, Schubert-Martin IBD Center
Cincinnati Children’s Hospital Medical Center Robert A. Saul, MD, FAAP, FACMG
Cincinnati, Ohio Medical Director, General Pediatrics
276: Inflammatory Bowel Disease Children’s Hospital, Greenville Health System
Greenville, South Carolina
Anca M. Safta, MD 253: Fragile X Syndrome
Director, Pediatric Gastroenterology Program
Wake Forest Baptist Medical Center Lawrence A. Schachner, MD
Winston-Salem, North Carolina Senior Associate Dean and Executive Director for
259: Gluten-Sensitive Enteropathy (Celiac Sprue) Development
Professor and Chair Emeritus and Stiefel Laboratories
Paul J. Sagerman, MD, MS Chair
Associate Professor, Pediatrics Director of the Division of Pediatric Dermatology
Section of General Pediatric and Adolescent Medicine Department of Dermatology and Cutaneous Surgery
Wake Forest School of Medicine Professor, Department of Pediatrics
Winston-Salem, North Carolina University of Miami Miller School of Medicine
66: Transitions to Adulthood Miami, Florida
326: Seborrheic Dermatitis
Shashi Sahai, MD, FAAP
Pediatric Hospitalist Eric Schaff, MD, FAAP
Sparrow Hospital Medical Director, Child and Adolescent Medicine
Lansing, Michigan Cherry Tree Pediatrics
324: Rheumatologic Diseases Uniontown, Pennsylvania
123: Contraception and Abortion
Joy Samanich, MD
Department of Pediatrics Richard J. Schanler, MD, FAAP
Division of Genetics Director, Neonatal Services
The Children’s Hospital at Montefiore Cohen Children’s Medical Center of New York and
Bronx, New York Northwell Health
96: Common Congenital Anomalies Professor
148: Facial Dysmorphism Hofstra Northwell School of Medicine at Hofstra
343: Umbilical Anomalies University
New Hyde Park, New York
Oranee Sanmaneechai, MD 88: Breastfeeding the Newborn
Pediatric Neurology Fellow
The Children’s Hospital at Montefiore Miriam Schechter, MD, FAAP
Albert Einstein College of Medicine Assistant Professor of Pediatrics
Bronx, New York Albert Einstein College of Medicine
Assistant Professor of Pediatrics Department of Pediatrics
Department of Pediatrics, Division of The Children’s Hospital at Montefiore
Neurology Bronx, New York
Siriraj Hospital, Mahidol University 146: Epistaxis
Bangkok, Thailand
107: The Newborn With Neurologic Findings Steven C. Schlozman, MD
Assistant Professor of Psychiatry
Indumathi Santhanam, MD, DCH Harvard Medical School
Professor and Head of Department Associate Director
Pediatric Emergency Care The Clay Center for Young Healthy Minds
Institute of Child Health Massachusetts General Hospital
Madras Medical College Boston, Massachusetts
Chennai-600008, India 15: Pediatric History: Assessing Functioning and Mental
363: Hypoglycemia Health
Contributors xxxv

John P. Schmidt, MD, FAAP Richard M. Schwend, MD, FAAP


Clinical Assistant Professor Professor of Orthopaedics and Pediatrics
Director, Division of Pediatric Hospital Medicine University of Missouri-Kansas City School of Medicine
Department of Pediatrics and Communicable Director of Research
Diseases Children’s Mercy Hospital
University of Michigan Health System Kansas City, Missouri
Ann Arbor, Michigan 97: Postnatal Assessment of Common Prenatal
Appendix B: Outpatient Procedures Sonographic Findings

Barton D. Schmitt, MD, FAAP W. Frederick Schwenk II, MD


Director, Pediatric Call Center Professor of Pediatrics
Professor of Pediatrics Division of Pediatric Endocrinology
University of Colorado School of Medicine Mayo Medical School
Aurora, Colorado Rochester, Minnesota
247: Encopresis 241: Diabetes Mellitus
354: Diabetic Ketoacidosis
Marcie Schneider, MD, FAAP, FSAHM
Elizabeth Secord, MD
Greenwich Adolescent Medicine
Professor of Pediatrics
Greenwich, Connecticut
Division Chief and Training Program Director
216: Anorexia Nervosa, Bulimia Nervosa, and Other
Eating Disorders Allergy and Immunology
Wayne State University School of Medicine
Cindy Schorzman, MD, FAAFP Children’s Hospital of Michigan
Physician, Student Health and Counseling Services Detroit, Michigan
University of California, Davis 350: Anaphylaxis
Davis, California
Robert T. Seese, MD, FAAP
75: Gay- and Lesbian-parented Families
Division of Ambulatory Pediatrics
Alan R. Schroeder, MD, FAAP Assistant Professor of Clinical Pediatrics
Director, PDCY The Ohio State University School of Medicine
Santa Clara Valley Medical Center Columbus, Ohio
San Jose, California 325: Rocky Mountain Spotted Fever
Clinical Associate Professor of Pediatrics (Affiliate)
Robert Sege, MD, PhD, FAAP
Stanford University School of Medicine
Senior Fellow
Stanford, California
The Center for the Study of Social Policy
372: Severe Acute Asthma (Status Asthmaticus)
Washington, DC
Scott A. Schroeder, MD, FCCP, FAAP Vice President, The Medical Foundation Division
Department of Pediatrics Health Resources in Action
The Floating Hospital for Children at Tufts Medical Boston, Massachusetts
Center 44: Violence Prevention
Boston, Massachusetts
133: Chest Pain George B. Segel, MD
Professor of Medicine
161: Hemoptysis
Emeritus Professor of Pediatrics
Cindy L. Schwartz, MD, MPH University of Rochester School of Medicine
Division Head and Chair of Pediatrics, ad interim Rochester, New York
The Curtis Distinguished Professor of Pediatric 175: Lymphadenopathy
Cancer Elizabeth A. Sellars, MD, FAAP
Professor, Departments of Pediatrics and Investigational Assistant Professor
Cancer Therapeutics Section of Genetics and Metabolism
The University of Texas M.D. Anderson Cancer Arkansas Children’s Hospital
Center Little Rock, Arkansas
Children’s Cancer Hospital 313: Pierre Robin Sequence
Houston, Texas
225: Cancers in Childhood Catherine R. Sellinger, MD, FAAP
Assistant Professor of Clinical Pediatrics
Robert P. Schwartz, MD, FAAP Albert Einstein College of Medicine
Professor Emeritus of Pediatrics Associate Director, Division of Pediatric Emergency
Wake Forest School of Medicine Medicine
Winston-Salem, North Carolina Department of Pediatrics
31: Applying Behavior Change Science The Children’s Hospital at Montefiore
Bronx, New York
Kathleen B. Schwarz, MD 140: Dizziness and Vertigo
Professor of Pediatrics
Director, Pediatric Liver Center Aimee E. Seningen, MD
Professor of Pediatrics First Steps Pediatrics and Adolescent Medicine
Johns Hopkins University School of Medicine Pittsburgh, Pennsylvania
Baltimore, Maryland 119: Interviewing Adolescents
265: Hepatitis
xxxvi Contributors

Usha Sethuraman, MD Laura Shone, DrPH, MSW


Program Director, Pediatric Emergency Medicine Director, Division of Primary Care Research
Fellowship Program Department of Research
Associate Professor American Academy of Pediatrics
Division of Emergency Medicine Elk Grove Village, Illinois
Carman and Ann Adams Department Adjunct Associate Professor of Pediatrics
of Pediatrics Division of General Pediatrics
Children’s Hospital of Michigan University of Rochester School of Medicine and Dentistry
Detroit, Michigan Rochester, New York
362: Hypertensive Emergencies 8: Health Literacy

M. Mohsin Shah, MD Lisa H. Shulman, MD, FAAP


Director of Neurotrauma Associate Professor of Clinical Pediatrics
Natividad Medical Center Division of Child Development
Salinas, California Albert Einstein College of Medicine
Director of Neurotrauma and Neurocritical Care The Children’s Hospital at Montefiore
Orange County Global Medical Center Bronx, New York
Santa Ana, California 65: Pediatric Rehabilitation
364: Increased Intracranial Pressure
David M. Siegel, MD, MPH, FAAP
Anjali A. Sharathkumar, MBBS, MD, MS Chief, Division of Pediatric Rheumatology
Associate Professor of Pediatrics, University of Iowa Golisano Children’s Hospital
Carver College of Medicine Professor of Pediatrics
Clinical Director of Hematology University of Rochester School of Medicine and Dentistry
Director, Iowa Hemophilia and Thrombosis Centre Rochester, New York
Stead Family Department of Pediatrics, University of Iowa 171: Joint Pain
Children’s Hospital 324: Rheumatologic Diseases
Iowa City, Iowa
355: Disseminated Intravascular Coagulation Michael R. Simon, MD
Clinical Professor Emeritus
Ruchika Sharma, MD Internal Medicine and Pediatrics
Joan Pediatric Hemostasis-Thrombosis Fellow Wayne State University School of Medicine
Division of Hematology/Oncology/BMT Detroit, Michigan
Nationwide Children’s Hospital Section of Allergy and Clinical Immunology
The Ohio State University School of Medicine William Beaumont Hospital
Columbus, Ohio Royal Oak, Michigan
27: Screening for Anemia Professor
Internal Medicine
Judith S. Shaw, EdD, MPH, RN, FAAP Oakland University William Beaumont School of Medicine
Associate Professor of Pediatrics and Nursing Rochester, Michigan
Executive Director, Vermont Child Health Improvement President
Program Secretory IgA, Inc.
University of Vermont College of Medicine Ann Arbor, Michigan
Burlington, Vermont 350: Anaphylaxis
45: Conducting the Health Supervision Visit
Sara H. Sinal, MD, FAAP
Katherine M. Shea, MD, MPH Professor Emerita of Pediatrics
Consultant in Children’s Environmental Health Wake Forest School of Medicine
Chapel Hill, North Carolina Winston-Salem, North Carolina
19: Environmental Health: The Role of the Primary Care 292: Münchausen Syndrome by Proxy: Medical Child Abuse
Physician
Pamela S. Singer, MD
Robert L. Sheridan, MD, FACS Assistant Professor
Burn Service Medical Director, Boston Shriners Hospital Division of Pediatric Nephrology
for Children Department of Pediatrics
Division of Burns, Massachusetts General Hospital Cohen Children’s Medical Center
Department of Surgery New Hyde Park, New York
Harvard Medical School 183: Proteinuria
Boston, Massachusetts
375: Thermal Injuries Michelle Sirak, MD
Director, Pediatric Physiatry Program
Rashmi Shetgiri, MD, MSHS Goryeb Children’s Hospital
Assistant Professor of Pediatrics Morristown, New Jersey
David Geffen School of Medicine at UCLA 65: Pediatric Rehabilitation
Los Angeles Biomedical Research Institute at Harbor−
UCLA Medical Center Lalitha Sivaswamy, MD
Torrance, California Associate Professor of Pediatrics
69: Caring for Families New to the United States Division of Child Neurology
Children’s Hospital of Michigan
Detroit, Michigan
260: Guillain-Barré Syndrome
Contributors xxxvii

Catherine C. Skae, MD Phyllis W. Speiser, MD


Vice President for Graduate Medical Education Chief, Division of Pediatric Endocrinology
Montefiore Medical Center Steven and Alexandra Cohen Children’s Medical Center of
Associate Dean for Graduate Medical Education New York
Albert Einstein College of Medicine Professor of Pediatrics
Bronx, New York Hofstra Northwell School of Medicine at Hofstra
203: Torticollis University
251: Foreign Bodies of the Ear, Nose, Airway, and Hempstead, New York
Esophagus 211: Adrenal Dysfunction

Douglas P. Sladen, PhD, CCC-A John David Spencer, MD


Mayo Clinic Assistant Professor of Pediatrics
Rochester, Minnesota Division of Nephrology
158: Hearing Loss Nationwide Children’s Hospital
The Ohio State University School of Medicine
Stephanie Slagle, MD, MPH, MS Columbus, Ohio
Assistant Program Director 30: Use of Urinalysis and Urine Culture in Screening
University of Florida Pediatric Residency
Assistant Professor of Pediatrics Michail Spiliopoulos, MD, FACOG, FACMG
Pensacola, Florida Fellow, Maternal-Fetal Medicine
339: Tonsillectomy and Adenoidectomy Georgetown University Hospital/Washington Hospital
Center
Rebecca L. Slayton, DDS, PhD Washington, DC
Law/Lewis Professor and Chair 281: Klinefelter Syndrome
Department of Pediatric Dentistry
University of Washington School of Dentistry Alfred J. Spiro, MD, FAAP
Seattle, Washington Professor of Neurology and Pediatrics
40: Oral Health Albert Einstein College of Medicine
Director, MDA Muscle Disease Clinic
David V. Smith, MD, FAAP Bronx, New York
Assistant Professor of Pediatrics 167: Hypotonia
Department of Pediatrics
Children’s Hospital of The King’s Daughters Mark L. Splaingard, MD
Norfolk, Virginia Nationwide Children’s Hospital
131: Back Pain Professor of Pediatrics
The Ohio State University School of Medicine
Gary A. Smith, MD, DrPH, FAAP Columbus, Ohio
Director, Center for Injury Research and Policy 194: Sleep Disturbances (Nonspecific)
The Research Institute at Nationwide Children’s Hospital
Dimon R. McFerson Endowed Chair in Injury Research S. Andrew Spooner, MD, MS, FAAP
Professor of Pediatrics Chief Medical Information Officer
The Ohio State University School of Medicine Professor, Biomedical Informatics
Columbus, Ohio Cincinnati Children’s Hospital Medical Center
42: Safety and Injury Prevention University of Cincinnati College of Medicine
Cincinnati, Ohio
Michael L. Smith, MD, FAAP 3: Information Systems in Pediatric Practice
Associate Clinical Professor of Medicine/Dermatology
Vanderbilt University School of Medicine Sarah H. Springer, MD, FAAP
Nashville, Tennessee Kids Plus Pediatrics
297: Neurocutaneous Syndromes Pittsburgh, Pennsylvania
70: Adoption
Tara Smith, PharmD
Clinical Pharmacy Manager, Pediatrics James E. Squires, MD, MS
Sacred Heart Hospital Fellow
Pensacola, Florida Division of Gastroenterology, Hepatology,
339: Tonsillectomy and Adenoidectomy and Nutrition
Cincinnati Children’s Hospital Medical Center
Matthew D. Smyth, MD, FACS University of Cincinnati College of Medicine
Professor of Neurosurgery and Pediatrics Cincinnati, Ohio
Washington University 306: Pancreatitis
St. Louis Children’s Hospital
St. Louis, Missouri Anthony Stallion, MD, FACS, FAAP
364: Increased Intracranial Pressure Professor Surgery and Pediatrics
Chief of Pediatric Surgery
Lamia Soghier, MD, FAAP, CHSE Levine Children’s Hospital
Assistant Professor of Pediatrics Jeff Gordon Children’s Hospital
Division of Neonatology at Children’s National Health Carolinas HealthCare System
System Charlotte, North Carolina
School of Medicine and Health Sciences 257: Gastrointestinal Obstruction
George Washington University 309: Pectus Excavatum and Pectus Carinatum
Washington, DC
Appendix C: Formulas and Reference Range Values
xxxviii Contributors

Thomas J. Starc, MD, MPH Dennis M. Styne, MD


Professor of Pediatrics Professor of Pediatrics and Yocha Dehe Endowed Chair in
Columbia University Pediatric Endocrinology
College of Physicians and Surgeons University of California, Davis Medical Center
New York−Presbyterian Morgan Stanley Children’s Sacramento, California
Hospital 243: Disorders of Sex Development
New York, New York
323: Rheumatic Fever Christina Kan Sullivan, MD, FAAP
Assistant Clinical Professor of Pediatrics
Russell W. Steele, MD, FAAP Albert Einstein College of Medicine
Division Head, Pediatric Infectious Diseases Department of Pediatrics, Division of General
Ochsner Children’s Health Center Pediatrics
Professor of Pediatrics The Children’s Hospital at Montefiore
University of Queensland School of Medicine Bronx, New York
St. Lucia, Australia 91: Hospital Discharge of the Healthy Term and Late
Clinical Professor Preterm Infant
Tulane University School of Medicine
New Orleans, Louisiana Srinivasan Suresh, MD, MBA, FAAP
311: Pharyngitis and Tonsillitis Visiting Professor of Pediatrics
University of Pittsburgh School of Medicine
David P. Steffen, DrPH, MSN Faculty, Pediatric Emergency Medicine
Director, Leadership MPH Track Chief Medical Information Officer
Public Health Leadership Program Children’s Hospital of Pittsburgh of UPMC
Gillings School of Global Public Health Pittsburgh, Pennsylvania
University of North Carolina 334: Sports Musculoskeletal Injuries
Chapel Hill, North Carolina 362: Hypertensive Emergencies
22: Promoting the Health of Young Children 363: Hypoglycemia

David H. Stein, MD, MPH Nicole J. Sutton, MD, FAAP


Department of Dermatology Assistant Professor of Pediatrics
Johns Hopkins University School of Medicine The Children’s Hospital at Montefiore
Baltimore, Maryland Albert Einstein College of Medicine
277: Insect Bites and Infestations Bronx, New York
101: The Newborn With a Heart Murmur
Ruth E. K. Stein, MD or Cyanosis
Professor of Pediatrics
Albert Einstein College of Medicine Jack T. Swanson, MD, FAAP
The Children’s Hospital at Montefiore Pediatrician
Bronx, New York McFarland Clinic
51: Care of Children With Special Health Care Needs Ames, Iowa
34: Mental Health
Lisa Stellwagen, MD, FAAP
Medical Director, Newborn Service Sarah A. Sydlowski, AuD, PhD
Division of Neonatology Audiology Director, Hearing Implant
University of California, San Diego Medical Center Program
San Diego, California Cleveland Clinic Head and Neck Institute
88: Breastfeeding the Newborn Cleveland, Ohio
26: Auditory Screening
David M. Stevens, MD, FAAP
Assistant Professor Frank Symons, PhD
Department of Pediatrics Department of Educational Psychology
The Children’s Hospital at Montefiore University of Minnesota
Albert Einstein College of Medicine Minneapolis, Minnesota
Bronx, New York 191: Self-harm
146: Epistaxis
Moira Szilagyi, MD, PhD, FAAP
R. Scott Strahlman, MD, FAAP Professor of Pediatrics
Instructor, Department of Pediatrics Section Chief, Developmental Studies
Johns Hopkins University School of Medicine University of California, Los Angeles
Baltimore, Maryland Los Angeles, California
Pediatrician, Columbia Medical Practice 72: Children in Foster or Kinship Care
Columbia, Maryland
252: Fractures and Dislocations Peter Szilagyi, MD, MPH, FAAP
351: Appendicitis Professor and Vice Chair of Clinical Research
Department of Pediatrics
Victor C. Strasburger, MD, FAAP University of California, Los Angeles
Distinguished Professor Emeritus Los Angeles, California
Founding Chief, Division of Adolescent Medicine 20: Immunizations
Department of Pediatrics 215: Animal and Human Bites
University of New Mexico School of Medicine 238: Cystic and Solid Masses of the Face
Albuquerque, New Mexico and Neck
43: Healthy Use of Media
Contributors xxxix

Tina Q. Tan, MD, FAAP Joseph D. Tobias, MD, FAAP


Professor of Pediatrics Chief, Department of Anesthesiology and Pain Medicine
Feinberg School of Medicine, Northwestern University Nationwide Children’s Hospital
Infectious Diseases Attending Physician Professor of Anesthesiology and Pediatrics
Ann and Robert H. Lurie Children’s Hospital The Ohio State University School of Medicine
Chicago, Illinois Columbus, Ohio
305: Otitis Media and Otitis Externa 54: Managing Acute Pain in Children
331: Sinusitis
Kristine Torjesen, MD, MPH, FAAP
Susanne E. Tanski, MD, MPH, FAAP FHI 360
Associate Professor of Pediatrics Durham, North Carolina
Geisel School of Medicine at Dartmouth College 48: Providing Culturally Effective Care
Hanover, New Hampshire Jessica R. Toste, PhD
Children’s Hospital at Dartmouth-Hitchcock Medical
Assistant Professor
Center
Department of Special Education
Lebanon, New Hampshire
The University of Texas at Austin
338: Tobacco and Nicotine Use
Austin, Texas
Howard Taras, MD, FAAP 191: Self-harm
Professor of Pediatrics Ali Tourchi, MD
University of California, San Diego Postdoctorate Fellow
La Jolla, California The James Buchanan Brady Urological Institute
23: Promoting the Health of School-aged Children
Johns Hopkins University School of Medicine
Baltimore, Maryland
Sarah Tariq, MD
Director, Pediatric Pain Management 272: Hypospadias, Epispadias, and Cryptorchidism
Assistant Professor Christine Tracy, MD, FACC
Division of Pediatric Anesthesiology and Pain Medicine The Heart Center
Arkansas Children’s Hospital Akron Children’s Hospital
University of Arkansas for Medical Sciences Akron, Ohio
Little Rock, Arkansas 159: Heart Murmurs
63: Preoperative Assessment
Mark S. Tremblay, PhD, FACSM
Nancy Tarshis, MA, MS, CCC-SLP Director, Healthy Active Living and Obesity Research
Supervisor of Speech and Language Services Children’s Hospital of Eastern Ontario Research Institute
Children’s Evaluation and Rehabilitation Center University of Ottawa
Albert Einstein College of Medicine Ottawa, Ontario, Canada
Bronx, New York 39: Physical Activity
195: Speech and Language Concerns
Maria Trent, MD, MPH, FAAP
Peter Tebben, MD Associate Professor of Pediatrics
Assistant Professor of Internal Medicine and Pediatrics Division of General Pediatrics and Adolescent Medicine
Division of Endocrinology Johns Hopkins University School of Medicine
Mayo Clinic College of Medicine Baltimore, Maryland
Rochester, Minnesota 127: Amenorrhea
241: Diabetes Mellitus 204: Vaginal Bleeding
354: Diabetic Ketoacidosis
Julian Trevino, MD
Karen L. Teelin, MD, MSEd, FAAP Professor and Chair
Assistant Professor of Pediatrics Department of Dermatology
Adolescent Medicine Specialist Boonshoft School of Medicine
State University of New York Upstate Medical University Wright State University
Syracuse, New York Dayton, Ohio
52: School-Related Issues for Children With Special 95: Neonatal Skin
Health Care Needs
Robert Turbow, MD, JD, FAAP
Anne Marie Tharpe, PhD Attending Neonatologist and Chief Patient Safety Officer
Professor and Chair Department of Maternal-Child Health, Division of
Department of Hearing and Speech Sciences Neonatology
Associate Director Department of Risk, Quality, and Safety-Central Coast
Vanderbilt Bill Wilkerson Center Service Area
Vanderbilt University School of Medicine Marian Regional Medical Center
Nashville, Tennessee Santa Maria, California
158: Hearing Loss 85: Medical-Legal Considerations in the Care of
Newborns
John F. Thompson, MD
Professor of Pediatrics W. Douglas Tynan, PhD, ABPP
Albert Einstein College of Medicine Professor of Pediatrics
Director, Division of Pediatric Gastroenterology and Nutrition Sidney Kimmel Medical College
The Children’s Hospital at Montefiore Thomas Jefferson University
Bronx, New York Philadelphia, Pennsylvania
125: Abdominal Pain 61: Psychosocial Therapies
xl Contributors

Kanagasabai Udhayashankar, MD, MPH Frank S. Virant, MD, FAAP


Pediatric Department Clinical Professor of Pediatrics
John F. Kennedy Medical Center University of Washington School of Medicine
Monrovia, Liberia Associate Director, Allergy/Immunology Training Program
248: Enterovirus and Evolving Infections Allergy Division Chief, Seattle Children’s Hospital
Partner, Northwest Asthma and Allergy Center
Catherine Ulman, MD Centralia, Washington
Department of Dermatology 212: Allergic Rhinitis
Boonshoft School of Medicine
Wright State University, Boonshoft School of Medicine Joseph A. Vitterito II, MD
Dayton, Ohio Associate Professor
95: Neonatal Skin Tufts University School of Medicine
Attending Neonatologist
Martin H. Ulshen, MD Department of Pediatrics
Clinical Professor Division of Neonatology
Pediatric Gastroenterology Maine Medical Center
University of North Carolina School of Medicine Portland, Maine
Chapel Hill, North Carolina 117: Support for Families Whose Infant Is Sick or Dying
Professor Emeritus
Pediatric Gastroenterology Jennifer Vodzak, MD, FAAP
Duke University School of Medicine Section of Infectious Diseases
Durham, North Carolina St. Christopher’s Hospital for Children
138: Diarrhea and Steatorrhea Assistant Professor of Pediatrics
174: Loss of Appetite Drexel University College of Medicine
206: Vomiting Philadelphia, Pennsylvania
236: Contagious Exanthematous Diseases
H. Michael Ushay, MD, PhD, FAAP
Medical Director, PCCU Carol L. Wagner, MD, FAAP
Professor of Clinical Pediatrics Professor of Pediatrics
Department of Pediatrics Medical University of South Carolina
Division of Critical Care Charleston, South Carolina
The Children’s Hospital at Montefiore 346: Vitamin D Inadequacy
Bronx, New York
136: Cyanosis Ellen R. Wald, MD, FAAP
Professor and Chair, Department of Pediatrics
Élise W. van der Jagt, MD, MPH, FAAP, SFHM University of Wisconsin School of Medicine and Public
Professor of Pediatrics and Critical Care Health
Chief, Pediatric Hospital Medicine Madison, Wisconsin
Department of Pediatrics 319: Preseptal and Orbital Cellulitis
University of Rochester School of Medicine/Dentistry
Rochester, New York Ruth R. Walden, MSW
152: Fever Family Specialist, CSHCN Program (Retired)
153: Fever of Unknown Origin New York State Department of Health
Appendix A: Pediatric Cardiopulmonary Resuscitation Albany, New York
9: Partnering With Families in Hospital and Community
William S. Varade, MD Settings
Associate Professor of Pediatrics
Division of Pediatric Nephrology Christine A. Walsh, MD, FACC
University of Rochester Medical Center Department of Pediatrics
Rochester, NY The Children’s Hospital at Montefiore
294: Nephritis Bronx, New York
295: Nephrotic Syndrome 101: The Newborn With a Heart Murmur or Cyanosis
159: Heart Murmurs
Abhay Vats, MD
Associate Professor of Pediatrics Eric C. Walter, MD, MSc
Division of Pediatric Nephrology Department of Pulmonary and Critical Care
University of Pittsburgh School of Medicine Medicine
Pittsburgh, Pennsylvania Northwest Permanente
344: Urinary Tract Infections Portland, Oregon
213: Altitude Sickness
Sandra Vicari, PhD, LCPC
Southern Illinois University School of Medicine Heather J. Walter, MD, MPH
Springfield, Illinois Professor, Psychiatry and Pediatrics
150: Family Dysfunction Vice-Chair, Psychiatry
Boston University School of Medicine
Alfin G. Vicencio, MD Chief, Child and Adolescent Psychiatry
Chief, Division of Pediatric Pulmonology Senior Lecturer on Psychiatry
Kravis Children’s Hospital and Icahn School of Medicine Harvard Medical School
at Mount Sinai Boston, Massachusetts
New York, New York 370: Psychiatric Emergencies: Suicidality, Agitation,
197: Stridor Psychosis, and Disaster Exposure
208: Wheezing
Contributors xli

Helen Chiehyu Wang, MD, FAAP James D. Wilkinson, MD, MPH


Pediatrics Professor, Carman and Ann Adams Department of
University of California, San Diego Pediatrics
La Jolla, California Associate Director, Children’s Research Center of
298: Obesity and Metabolic Syndrome Michigan
Children’s Hospital of Michigan
Cynthia Ward, PsyD Wayne State University School of Medicine
Pediatric Psychologist Detroit, Michigan
Assistant Professor, Department of Psychiatry and 361: Heart Failure
Behavioral Sciences
Johns Hopkins University School of Medicine Timothy Wilks, MD, FAAP (CDR, MC, USN)
Pain Services Coordinator Commander, Medical Corps, United States Navy
Kennedy Krieger Institute Assistant Professor in Pediatrics
Baltimore, Maryland Uniformed Services University of the Health Sciences
55: Managing Chronic Pain in Children Jacksonville, North Carolina
77: Children in Military Families
Richard Wasserman, MD, MPH, FAAP
Professor of Pediatrics Donna Beth Willey-Courand, MD
University of Vermont College of Medicine Professor of Pediatrics
Burlington, Vermont Chief, Division of Pediatric Pulmonology
28: Vision Screening Director, Pediatric Cystic Fibrosis Center
University of Texas Health Science Center at
Joshua R. Watson, MD, FAAP San Antonio
Assistant Professor of Pediatrics San Antonio, Texas
Division of Infectious Diseases 239: Cystic Fibrosis
Nationwide Children’s Hospital
The Ohio State University School of Medicine Judith V. Williams, MD, FAAD
Columbus, Ohio Director, Pediatric Dermatology
267: Human Herpesvirus-6 and Human Herpesvirus-7 Children’s Specialty Group
Infections Associate Professor of Pediatrics and Dermatology
Eastern Virginia Medical School
Geoffrey A. Weinberg, MD, FAAP Norfolk, Virginia
Professor of Pediatrics and Director, Pediatric HIV 209: Acne
Program 222: Bacterial Skin Infections
Golisano Children’s Hospital 245: Drug Eruptions, Erythema Multiforme, Stevens-
University of Rochester School of Medicine and Dentistry Johnson Syndrome
Rochester, New York 345: Verrucae (Warts)
175: Lymphadenopathy
289: Meningitis Earnestine Willis, MD, MPH
Kellner Professor in Pediatrics
Benjamin Weintraub, MD, FAAP Department of Pediatrics
Marblehead Pediatrics Director, Center for the Advancement of Underserved
Marblehead, Massachusetts Children
154: Foot and Leg Problems Medical College of Wisconsin
Milwaukee, Wisconsin
Michael Weitzman, MD, FAAP 79: Children in Poverty
Professor of Pediatrics and Environmental Medicine
New York University School of Medicine Craig M. Wilson, MD
Professor of Global Public Health Professor of Epidemiology, Pediatrics, and
New York University Microbiology
New York, New York Director, UAB Sparkman Center for Global Health
71: Children of Divorce University of Alabama at Birmingham
283: Lead Poisoning Birmingham, Alabama
258: Giardiasis
Jennifer Greene Welch, MD 314: Pinworm Infestations
Assistant Professor of Pediatrics
Division of Pediatric Hematology/Oncology Lawrence S. Wissow, MD, MPH, FAAP
Alpert Medical School of Brown University Professor, Department of Health, Behavior, and Society
Providence, Rhode Island Johns Hopkins Bloomberg School of Public Health
225: Cancers in Childhood Baltimore, Maryland
46: Effective Communication Strategies
Susan Wiley, MD, FAAP 62: Psychotropic Medications in Primary
Co-Director, Division of Developmental and Behavioral Care Pediatrics
Pediatrics 129: Anxiety
Cincinnati Children’s Hospital Medical Center 137: Depression
Professor of Pediatrics 139: Disruptive Behavior and Aggression
University of Cincinnati College of Medicine 168: Inattention and Impulsivity
Cincinnati, Ohio
318: Prader-Willi Syndrome
xlii Contributors

Karen S. Wood, MD, FAAP Richard Young, MD, MPH, FAAP


Professor of Pediatrics Clinical Associate Professor of Pediatrics and Neurology
Medical Director, Neonatal Critical Care Center, UNC Yale University School of Medicine
Hospitals New Haven, Connecticut
Medical Director, Pediatric Transport, UNC AirCare and Assistant Professor of Pediatrics (Neurology)
Ground Transportation Services University of Connecticut School of Medicine
Department of Pediatrics Farmington, Connecticut
Division of Neonatal-Perinatal Medicine 290: Meningoencephalitis
University of North Carolina Hospitals
Chapel Hill, North Carolina C. Michelle Zebrack, MD
111: Care of the Sick or Premature Infant Before Critical Care Medicine
Transport Salt Lake City, Utah
368: Pneumothorax and Pneumomediastinum
Robert P. Woroniecki, MD, MS
Chief, Division of Pediatric Nephrology and Hypertension Gaston Zilleruelo, MD, FAAP
Associate Professor of Clinical Pediatrics Professor of Pediatrics
SUNY School of Medicine Director, Division of Pediatric Nephrology
Stony Brook Children’s Hospital Fellowship Training Program Director
Stony Brook, New York Department of Pediatrics
183: Proteinuria University of Miami Miller School of Medicine
Miami, Florida
Stephanie Yee-Guardino, DO, FAAP 163: High Blood Pressure
Senior Physician
Department of Pediatrics
The Permanente Medical Group, Inc.
South Sacramento, California
304: Osteomyelitis
328: Septic Arthritis
American Academy of Pediatrics
Reviewers

Bright Futures Steering Committee Section on Allergy and Immunology


Committee on Adolescence Section on Anesthesiology and Pain Medicine
Committee on Bioethics Section on Bioethics
Committee on Child Abuse and Neglect Section on Breastfeeding
Committee on Child Health Financing Section on Cardiology and Cardiac Surgery
Committee on Drugs Section on Child Abuse and Neglect
Committee on Fetus and Newborn Section on Clinical Pharmacology and Therapeutics
Committee on Genetics Section on Dermatology
Committee on Medical Liability and Risk Management Section on Developmental and Behavioral Pediatrics
Committee on Native American Child Health Section on Early Career Physicians
Committee on Nutrition Section on Emergency Medicine
Committee on Pediatric Education Section on Endocrinology
Committee on Pediatric Emergency Medicine Section on Epidemiology, Public Health, and Evidence
Committee on Practice and Ambulatory Medicine Section on Gastroenterology, Hepatology, and Nutrition
Committee on Psychosocial Aspects of Child and Family Section on Hematology/Oncology
Health Section on Home Care
Committee on Substance Use and Prevention Section on Hospice and Palliative Medicine
Council on Children With Disabilities Section on Infectious Diseases
Council on Children With Disabilities: Autism Section on Lesbian, Gay, Bisexual, and Transgender Health
Subcommittee and Wellness (Provisional)
Council on Communications and Media Section on Nephrology
Council on Community Pediatrics Section on Neurological Surgery
Council on Early Childhood Section on Neurology
Council on Environmental Health Section on Oral Health
Council on Foster Care, Adoption, and Kinship Care Section on Orthopaedics
Council on Injury, Violence, and Poison Prevention Section on Pediatric Pulmonology and Sleep Medicine
Council on Quality Improvement and Patient Safety Section on Plastic Surgery
Council on School Health Section on Radiology
Council on Sports Medicine and Fitness Section on Rheumatology
Disaster Preparedness Advisory Council Section on Surgery
Medical Home Chapter Champions on Asthma, Allergy, and Section on Tobacco Control
Anaphylaxis Section on Uniformed Services
Medical Home Implementation Program Advisory Section on Urology
Committee Task Force on Early Hearing Detection and Intervention
Section on Administration and Practice Management
Section on Adolescent Health

American Academy of Pediatrics Reviewers xliii


Contents

Part 1 15 Pediatric History: Assessing Functioning


DELIVERING PEDIATRIC HEALTH CARE and Mental Health, 99
Steven C. Schlozman, MD; Michael S. Jellinek, MD
1 Health Care Delivery System, 3
Christopher B. Forrest, MD, PhD; Jessica Hawkins, MS; 16 Pediatric Physical Examination:
Evan S. Fieldston, MD, MBA, MS Interpretation of Findings, 104
Douglas N. Homnick, MD, MPH
2 Practice Organization, 17
Thomas K. McInerny, MD 17 Sports Preparticipation Physical
Evaluation, 136
3 Information Systems in Pediatric Practice, 21
David T. Bernhardt, MD
S. Andrew Spooner, MD, MS
18 Pediatric Imaging, 145
4 Evidence-based Medicine, 29
Terry L. Levin, MD
Brett W. Robbins, MD
5 Quality Improvement in Practice, 33 SECTION 2: PREVENTIVE PEDIATRICS
Charles J. Homer, MD, MPH; Victoria W. Rogers, MD 19 Environmental Health: The Role of the
6 Medical Home Collaborative Care, 39 Primary Care Physician, 153
Jeanne W. McAllister, BSN, MS, MHA; W. Carl Cooley, MD Katherine M. Shea, MD, MPH; Sophie J. Balk, MD

7 Planned Coordinated Care to Support the 20 Immunizations, 160


Medical Home, 43 Sharon G. Humiston, MD, MPH; William Atkinson, MD, MPH;
Jeanne W. McAllister, BSN, MS, MHA; W. Carl Cooley, MD Cynthia Rand, MD, MPH; Peter Szilagyi, MD, MPH

8 Health Literacy, 48 C O M M U N I T Y H E A LT H
Laura Shone, DrPH, MSW
21 The Essential Role of the Primary Care
9 Partnering With Families in Hospital and Pediatrician, 168
Community Settings, 53 Francis E. Rushton, MD
Ruth R. Walden, MSW; Molly Cole
22 Promoting the Health of Young Children, 171
10 Family-Centered Care of Hospitalized David P. Steffen, DrPH, MSN; Jill Kerr, DNP, MPH;
Children, 58 Jonathan B. Kotch, MD, MPH
Jerrold M. Eichner, MD
23 Promoting the Health of School-aged
11 Ethical and Legal Issues for the Primary Children, 179
Care Physician, 61 Barbara L. Frankowski, MD, MPH; Howard Taras, MD
Lainie Friedman Ross, MD, PhD; John D. Lantos, MD
24 Promoting the Health of Adolescents, 187
12 Emergency Care, 72 Breena Welch Holmes, MD; Paula M. Duncan, MD
Karen S. Frush, MD
SCREENING
25 Screening: General Considerations, 191
Part 2 Paul H. Dworkin, MD
PRINCIPLES OF CARE 26 Auditory Screening, 195
SECTION 1: PEDIATRIC ASSESSMENT Sarah A. Sydlowski, AuD, PhD; Lynzee A. Cornell, PhD, CCC-A;
David R. Cunningham, PhD
13 Pediatric History: Assessing the Child, 79
William E. Boyle, MD 27 Screening for Anemia, 203
Ruchika Sharma, MD; Bryce A. Kerlin, MD
14 Pediatric History: Assessing the Social
Environment, 89 28 Vision Screening, 207
Penelope Knapp, MD Alex R. Kemper, MD, MPH, MS;
Richard Wasserman, MD, MPH

Contents xlv
xlvi Contents

29 Screening for Genetic-Metabolic 50 Care of Children With Mental Health


Diseases, 210 Problems, 346
Anirudh Saronwala, MD, MS; Shobana Kubendran, MD; Jane Meschan Foy, MD
Stephen G. Kahler, MD
51 Care of Children With Special Health Care
30 Use of Urinalysis and Urine Culture in Needs, 356
Screening, 225 Ruth E.K. Stein, MD; Sonia O. Imaizumi, MD;
David Hains, MD; John David Spencer, MD Lynn F. Davidson, MD

H E A LT H P R O M O T I O N IN PRACTICE 52 School-Related Issues for Children With


31 Applying Behavior Change Science, 229 Special Health Care Needs, 371
Karen L. Teelin, MD, MSEd; Nienke P. Dosa, MD, MPH
Sebastian G. Kaplan, PhD; Robert P. Schwartz, MD
32 Family Support, 233 53 Physiology and Management of Fever, 375
Henry M. Adam, MD
James M. Perrin, MD; Amy Pirretti, MS
33 Healthy Child Development, 237 54 Managing Acute Pain in Children, 379
Joseph D. Tobias, MD
Marian Earls, MD
34 Mental Health, 245 55 Managing Chronic Pain in Children, 390
Sabine Kost-Byerly, MD; Cynthia Ward, PsyD
Jack T. Swanson, MD; Jane Meschan Foy, MD
35 Healthy Weight, 258 56 Self-regulation Therapies: Hypnosis and
Biofeedback, 403
Sandra G. Hassink, MD, MS
Denise Bothe, MD; Karen Olness, MD
36 Healthy Nutrition: Infants, 265
57 Complementary and Integrative Medical
Frank R. Greer, MD
Therapies, 411
37 Healthy Nutrition: Children, 270 Gregory A. Plotnikoff, MD, MTS; Kathi J. Kemper, MD, MPH;
Frank R. Greer, MD Timothy P. Culbert, MD
38 Healthy Nutrition: Adolescents, 273 58 Fluids, Electrolytes, and Acid-Base
Frank R. Greer, MD Composition, 419
39 Physical Activity, 277 Prashant Mahajan, MD, MPH, MBA; Jon R. Felt, MD
Claire M.A. LeBlanc, MD; Mark S. Tremblay, PhD 59 Blood Products and Their Uses, 433
40 Oral Health, 281 Vikramjit S. Kanwar, MRCP(UK), MBA; Michael U. Callaghan,
Rebecca L. Slayton, DDS, PhD MD; Madhvi Rajpurkar, MD

41 Healthy Sexual Development and 60 Antimicrobial Therapy, 441


Sexuality, 291 Blaise Congeni, MD; Cecilia Di Pentima, MD, MPH
Leena Shrivastava Dev, MD; Mario Cruz, MD 61 Psychosocial Therapies, 476
42 Safety and Injury Prevention, 302 W. Douglas Tynan, PhD; Meghan McAuliffe Lines, PhD
Rebecca Levin, MPH; Gary A. Smith, MD, DrPH 62 Psychotropic Medications in Primary Care
43 Healthy Use of Media, 307 Pediatrics, 481
Victor C. Strasburger, MD Mark A. Riddle, MD; Susan dosReis, PhD; Gloria Reeves, MD;
Lawrence S. Wissow, MD, MPH; David Pruitt, MD;
44 Violence Prevention, 315 Jane Meschan Foy, MD
Robert Sege, MD, PhD
63 Preoperative Assessment, 502
45 Conducting the Health Supervision Visit, 321 Sarah Tariq, MD; Jayant K. Deshpande, MD, MPH
Joseph F. Hagan, Jr, MD; Judith S. Shaw, EdD, MPH, RN;
64 Postoperative Care, 521
Paula M. Duncan, MD
Jennifer Aunspaugh, MD; Jayant K. Deshpande, MD, MPH
SECTION 3: GENERAL MANAGEMENT OF 65 Pediatric Rehabilitation, 534
CHILDREN WITH HEALTH AND Lisa H. Shulman, MD; Dona Rani Kathirithamby, MD;
BEHAVIORAL PROBLEMS Maris Rosenberg, MD; Michelle Sirak, MD
46 Effective Communication Strategies, 327 66 Transitions to Adulthood, 544
Lawrence S. Wissow, MD, MPH Paul J. Sagerman, MD, MS
47 Adherence to Pediatric Health Care 67 Palliative, End-of-Life, and Bereavement
Recommendations, 333 Care, 555
Robin S. Everhart, PhD; Barbara H. Fiese, PhD Alexander L. Okun, MD
48 Providing Culturally Effective Care, 337
SECTION 4: CARE OF SPECIAL POPULATIONS
Karen Olness, MD; Kristine Torjesen, MD, MPH
68 Children Exposed to Adverse Childhood
49 Discussing Serious Symptoms, Results, and Experiences, 569
Diagnoses With the Patient and Family, 342 Andrew Garner, MD, PhD
Daniel W. Mruzek, PhD; Elizabeth Baltus Hebert, PhD;
Philip W. Davidson, PhD
Contents xlvii

69 Caring for Families New to the United 86 Prenatal Pediatric Visit, 738
States, 575 Deborah E. Campbell, MD
Rashmi Shetgiri, MD, MSHS; Hema N. Magge, MD, MS; 87 Care of the Newborn After Delivery, 742
Paul L. Geltman, MD, MPH; Glenn Flores, MD
Diane E. Bloomfield, MD; Elaine A. Dinolfo, MD, MS;
70 Adoption, 589 Faye Kokotos, MD
Sarah H. Springer, MD 88 Breastfeeding the Newborn, 749
71 Children of Divorce, 601 Lisa Stellwagen, MD; Richard J. Schanler, MD
Rhonda Graves Acholonu, MD; Lori Legano, MD; 89 The Circumcision Decision, 765
Michael Weitzman, MD
Andrew L. Freedman, MD
72 Children in Foster or Kinship Care, 605
90 Care of the Late Preterm Infant, 769
Moira Szilagyi, MD, PhD; Sandra H. Jee, MD, MPH
Sheri L. Nemerofsky, MD; Viral A. Dave, MD;
73 Children in the Juvenile Justice System, 620 Deborah E. Campbell, MD
Robert E. Morris, MD; Evalyn Horowitz, MD 91 Hospital Discharge of the Healthy Term and
74 Children in Self-care, 626 Late Preterm Infant, 779
Robert Needlman, MD Christina Kan Sullivan, MD; Sonia Dela Cruz-Rivera, MD
75 Gay- and Lesbian-parented Families, 629 92 Follow-up Care of the Healthy Newborn, 790
Cindy Schorzman, MD; Melanie A. Gold, DO, DABMA, MQT Deborah E. Campbell, MD
76 Lesbian, Gay, and Bisexual Youth, 634
SECTION 2: ASSESSMENT AND PHYSICAL
Robert J. Bidwell, MD
EXAMINATION OF THE NEWBORN
77 Children in Military Families, 642
93 Maternal Medical History, 797
Timothy Wilks, MD (CDR, MC, USN);
Harpreet Kaur, MD; Deborah E. Campbell, MD
Beth Ellen Davis, MD, MPH (COL, MC, USA, Retired)
78 Homeless Children, 648 94 Physical Examination of the Newborn, 802
Harpreet Kaur, MD; Deborah E. Campbell, MD
Patricia McQuilkin, MD; Jason R. Rafferty, MD, MPH, EdM
79 Children in Poverty, 656 95 Neonatal Skin, 819
Julian Trevino, MD; Amy Yuntzu-Yen Chen, MD;
Renée R. Jenkins, MD; Earnestine Willis, MD, MPH;
Catherine Ulman, MD
Sheryl E. Allen, MD, MS
96 Common Congenital Anomalies, 828
Orna Rosen, MD; Robert W. Marion, MD;
Part 3 Joy Samanich, MD
MATERNAL AND FETAL HEALTH: 97 Postnatal Assessment of Common Prenatal
EFFECT ON PREGNANCY OUTCOMES Sonographic Findings, 837
Deborah E. Campbell, MD; Sheri L. Nemerofsky, MD;
AND PERINATAL HEALTH Abieyuwa Iyare, MD; Teri Jo Mauch, MD, PhD;
80 Perinatal Preventive Care: Fetal Richard M. Schwend, MD
Assessment, 667
E. Rebecca Pschirrer, MD, MPH; George A. Little, MD SECTION 3: NEONATAL MEDICAL CONDITIONS
81 Assisted Reproductive Technologies, Multiple 98 Abnormalities of Fetal Growth, 847
Births, and Pregnancy Outcomes, 693 Suhas M. Nafday, MD, MRCP(Ire), DCH
Christie J. Bruno, DO; Edith A. McCarthy, MD; 99 Neonatal Jaundice, 858
Peter A. M. Auld, MD; James A. Grifo, MD, PhD
Vishal Subodhbhai Kapadia, MD; Luc P. Brion, MD
82 Prenatal Diagnosis, 699
100 Respiratory Distress and Breathing
Garfield Clunie, MD
Disorders in the Newborn, 867
83 Fetal Interventions, 710 Suhas M. Nafday, MD, MRCP(Ire), DCH; Christina Long, DO
Garfield Clunie, MD
101 The Newborn With a Heart Murmur or
84 Maternal Depression, 720 Cyanosis, 888
Marian Earls, MD Nicole J. Sutton, MD; Christine A. Walsh, MD
102 The Newborn at Risk for Infection, 899
Tsoline Kojaoghlanian, MD
Part 4
103 The Newborn With Hematologic
CARE OF HEALTHY AND HIGH-RISK Abnormalities, 909
INFANTS M. Catherine Driscoll, MD

SECTION 1: ROUTINE CARE ISSUES 104 Prenatal Drug Use: Neonatal Effects and the
Drug Withdrawal Syndrome, 917
85 Medical-Legal Considerations in the Care of
Enrique M. Ostrea Jr, MD; Neil Joseph B. Alviedo, MD;
Newborns, 727
Felix Banadera, MD; Josef Misael Cortez, MD;
Jonathan M. Fanaroff, MD, JD; Robert Turbow, MD, JD
Lilia C. De Jesus, MD
xlviii Contents

105 Transient Metabolic Disturbances in the 121 Adolescent Sexuality, 1152


Newborn, 929 Unab I. Khan, MD, MS; Chanelle A. Coble, MD;
Zuzanna Kubicka, MD; George A. Little, MD Susan M. Coupey, MD
106 Specific Congenital Metabolic Diseases, 938 122 Adolescent Pregnancy and Parenthood, 1159
Angel Rios, MD; Darius J. Adams, MD Dianne S. Elfenbein, MD; Marianne E. Felice, MD
107 The Newborn With Neurologic Findings, 963 123 Contraception and Abortion, 1164
Oranee Sanmaneechai, MD; Aleksandra Djukic, MD, PhD Eric Schaff, MD
108 Surgical Emergencies of the Chest and
Abdomen in the Newborn, 968
Anna Christina Ganster, MD; Mohamed Farooq Ahamed, MD; Part 6
Mamta Fuloria, MD PRESENTING SIGNS AND SYMPTOMS
SECTION 4: PERINATAL CARE: CARING 124 Abdominal Distention, 1175
Peter F. Belamarich, MD
FOR THE HIGH-RISK INFANT
109 Assessment and Stabilization at Delivery, 987 125 Abdominal Pain, 1181
Anthony M. Loizides, MD; Katherine Atienza Orellana, DO;
Joaquim M. B. Pinheiro, MD, MPH
John F. Thompson, MD
110 Identifying the Newborn Who Requires
126 Alopecia and Hair Shaft Anomalies, 1188
Specialized Care, 1001
Nancy K. Barnett, MD
Upender K. Munshi, MBBS, MD
127 Amenorrhea, 1194
111 Care of the Sick or Premature Infant Before
Maria Trent, MD, MPH; Alain Joffe, MD, MPH
Transport, 1011
Gina Marie Geis, MD; Karen S. Wood, MD 128 Anemia and Pallor, 1199
Alicia K. McFarren, MD; Adam S. Levy, MD
112 Continuing Care of the Infant After Transfer
From Neonatal Intensive Care, 1018 129 Anxiety, 1209
Deborah E. Campbell, MD Lawrence S. Wissow, MD, MPH
113 Discharge Planning for the High-Risk 130 Ataxia, 1217
Newborn Requiring Intensive Care, 1050 Philip Overby, MD
Christina Long, DO; Deborah E. Campbell, MD 131 Back Pain, 1221
114 Follow-up Care of the Graduate From Joel S. Brenner, MD, MPH; David V. Smith, MD
Neonatal Intensive Care, 1068 132 Cardiac Arrhythmias, 1227
Judy C. Bernbaum, MD J. Peter Harris, MD
SECTION 5: NEONATAL OUTCOMES 133 Chest Pain, 1235
115 Health and Developmental Outcomes of Scott A. Schroeder, MD
Very Preterm and Very Low-Birth-Weight 134 Constipation, 1240
Infants, 1085 Peter F. Belamarich, MD
Deborah E. Campbell, MD; Sonia O. Imaizumi, MD;
Judy C. Bernbaum, MD 135 Cough, 1247
Michael G. Marcus, MD
116 Health and Developmental Outcomes of
Selected Medically Complex Neonates, 1096 136 Cyanosis, 1252
Sarah Chambers, MD; Deborah E. Campbell, MD H. Michael Ushay, MD, PhD
137 Depression, 1259
SECTION 6: SUPPORTING FAMILIES DURING Lawrence S. Wissow, MD, MPH
PERINATAL ILLNESS AND DEATH
138 Diarrhea and Steatorrhea, 1267
117 Support for Families Whose Infant Is Sick or
Martin H. Ulshen, MD
Dying, 1117
Joseph A. Vitterito II, MD; Deborah E. Campbell, MD; 139 Disruptive Behavior and Aggression, 1282
George A. Little, MD Lawrence S. Wissow, MD, MPH
140 Dizziness and Vertigo, 1289
Part 5 Ruby F. Rivera, MD; Catherine R. Sellinger, MD
ADOLESCENCE 141 Dysmenorrhea, 1292
118 Challenges of Health Care Delivery to Linda M. Dinerman, MD, PC
Adolescents, 1135 142 Dysphagia, 1295
Richard E. Kreipe, MD Mohammad F. El-Baba, MD
119 Interviewing Adolescents, 1141 143 Dyspnea, 1299
Melanie A. Gold, DO, DABMA, MQT; Aimee E. Seningen, MD Jay H. Mayefsky, MD, MPH
120 Counseling Parents of Adolescents, 1149 144 Dysuria, 1305
Jonathan D. Klein, MD, MPH Beatrice Goilav, MD; Frederick J. Kaskel, MD, PhD
Contents xlix

145 Edema, 1309 170 Jaundice, 1473


Paul A. Levy, MD Debra H. Pan, MD; Yolanda Rivas, MD
146 Epistaxis, 1312 171 Joint Pain, 1480
Miriam Schechter, MD; David M. Stevens, MD David M. Siegel, MD, MPH; Bethany Marston, MD
147 Extremity Pain, 1319 172 Learning Difficulty, 1484
Michael G. Burke, MD, MBA; David C. Hanson, MD Barbara L. Frankowski, MD, MPH
148 Facial Dysmorphism, 1326 173 Limp, 1490
Robert W. Marion, MD; Joy Samanich, MD Ginger Janow, MD; Norman T. Ilowite, MD
149 Failure to Thrive: Pediatric 174 Loss of Appetite, 1497
Undernutrition, 1333 Nancy McGreal, MD; Martin H. Ulshen, MD
Andrew D. Racine, MD, PhD 175 Lymphadenopathy, 1499
150 Family Dysfunction, 1340 Geoffrey A. Weinberg, MD; George B. Segel, MD;
Mary Iftner Dobbins, MD; Sandra Vicari, PhD, LCPC Caroline Breese Hall, MD
151 Fatigue and Weakness, 1345 176 Macrocephaly, 1506
Philip O. Ozuah, MD, PhD; Marina Reznik, MD, MS Oscar H. Purugganan, MD, MPH
152 Fever, 1351 177 Medically Unexplained Symptoms, 1510
Élise W. van der Jagt, MD, MPH Rebecca Baum, MD; John Campo, MD

153 Fever of Unknown Origin, 1361 178 Microcephaly, 1514


Élise W. van der Jagt, MD, MPH Oscar H. Purugganan, MD, MPH

154 Foot and Leg Problems, 1366 179 Nonconvulsive Periodic Disorders, 1517
Benjamin Weintraub, MD Sarah M. Roddy, MD

155 Gastrointestinal Hemorrhage, 1379 180 Odor (Unusual Urine and Body), 1520
Jeffrey R. Avner, MD Erik Langenau, DO, MS

156 Gender Expression and Identity Issues, 1386 181 Petechiae and Purpura, 1525
Robert J. Bidwell, MD Lisa Figueiredo, MD; Adam S. Levy, MD

157 Headache, 1404 182 Polyuria, 1528


Jack Gladstein, MD Ryan S. Miller, MD; Samuel M. Libber, MD; Leslie
Plotnick, MD
158 Hearing Loss, 1408
Anne Marie Tharpe, PhD; Douglas P. Sladen, PhD, CCC-A; 183 Proteinuria, 1533
Ann Rothpletz, PhD, CCC-A Robert P. Woroniecki, MD, MS; Pamela S. Singer, MD

159 Heart Murmurs, 1412 184 Pruritus, 1538


Christine Tracy, MD; Christine A. Walsh, MD Nancy K. Barnett, MD

160 Hematuria, 1417 185 Puberty: Normal and Abnormal, 1540


Kimberly J. Reidy, MD; Marcela Del Rio, MD Robert K. Kritzler, MD; Dominique Long, MD;
Leslie Plotnick, MD
161 Hemoptysis, 1422
186 Rash, 1545
Scott A. Schroeder, MD
Daniel Krowchuk, MD
162 Hepatomegaly, 1427
187 Recurrent Infections, 1553
Philip O. Ozuah, MD, PhD; Marina Reznik, MD, MS
David L. Goldman, MD
163 High Blood Pressure, 1429
188 Red Eye/Pink Eye, 1559
Jayanthi Chandar, MD; Sarah E. Messiah, PhD, MPH;
Gaston Zilleruelo, MD; Steven E. Lipshultz, MD Judith B. Lavrich, MD; Sebastian Heersink, MD

164 Hirsutism, Hypertrichosis, and Precocious 189 School Absenteeism and School Refusal, 1567
Sexual Hair Development, 1444 Ronald V. Marino, DO, MPH
Genna W. Klein, MD; Mariam Gangat, MD 190 Scrotal Swelling and Pain, 1571
165 Hoarseness, 1452 Lane S. Palmer, MD
Sanjay R. Parikh, MD 191 Self-harm, 1578
166 Hyperhidrosis, 1457 Nancy Heath, PhD; Jessica R. Toste, PhD;
Timothy R. Moore, PhD; Frank Symons, PhD
Nancy K. Barnett, MD
192 Self-stimulating Behaviors, 1582
167 Hypotonia, 1458
Richard M. Sarles, MD; Sarah Edwards, DO
Alfred J. Spiro, MD
193 Short Stature, 1585
168 Inattention and Impulsivity, 1462
Paul Kaplowitz, MD, PhD
Lawrence S. Wissow, MD, MPH
194 Sleep Disturbances (Nonspecific), 1589
169 Irritability and Fussiness, 1467 Mark L. Splaingard, MD; Anne May, MD
Diana King, MD; Waseem Hafeez, MBBS
l Contents

195 Speech and Language Concerns, 1607 217 Apparent Life-Threatening Events, 1728
Maris Rosenberg, MD; Nancy Tarshis, MA, MS Keyvan Rafei, MD; Carol J. Blaisdell, MD
196 Splenomegaly, 1612 218 Asthma, 1736
Marina Reznik, MD, MS; Philip O. Ozuah, MD, PhD Chitra Dinakar, MD
197 Stridor, 1615 219 Atopic Dermatitis, 1754
Alfin G. Vicencio, MD; John P. Bent, MD Linda S. Nield, MD; Jonette E. Keri, MD, PhD
198 Substance Use: Initial Approach in 220 Attention-deficit/Hyperactivity Disorder, 1758
Primary Care, 1620 Laurel K. Leslie, MD, MPH; James Guevara, MD, MPH
Sharon Levy, MD, MPH; Sarah Bagley, MD 221 Autism Spectrum Disorder, 1777
199 Symptoms of Emotional Disturbance in Elizabeth M. Kryszak, PhD; James A. Mulick, PhD;
Young Children, 1627 Eric M. Butter, PhD
Mary Margaret Gleason, MD 222 Bacterial Skin Infections, 1786
200 Syncope, 1636 Kalyani Marathe, MD, MPH; Judith V. Williams, MD
Prema Ramaswamy, MD 223 Brain Tumors, 1792
201 Temper Tantrums and Breath-holding Sarah Rush, MD; Bruce H. Cohen, MD
Spells, 1641 224 Bronchiolitis, 1797
Gregory E. Prazar, MD Caroline Breese Hall, MD
202 Tics, 1644 225 Cancers in Childhood, 1803
Robert A. King, MD Lisa Hackney, MD; Jennifer Greene Welch, MD;
203 Torticollis, 1650 Cindy L. Schwartz, MD, MPH
Philip O. Ozuah, MD, PhD; Catherine C. Skae, MD 226 Cerebral Palsy, 1829
204 Vaginal Bleeding, 1653 Nancy Murphy, MD
Maria Trent, MD, MPH; Alain Joffe, MD, MPH 227 Chickenpox, 1835
205 Vaginal Discharge, 1657 David W. Kimberlin, MD; Nathan Price, MD
Linda M. Dinerman, MD, PC; Alain Joffe, MD, MPH 228 Chronic Fatigue Syndrome, 1846
206 Vomiting, 1662 Leonard R. Krilov, MD
Martin H. Ulshen, MD; Nancy McGreal, MD 229 Cleft Lip and Cleft Palate, 1849
207 Weight Loss, 1665 Arlene A. Rozzelle, MD; Jugpal S. Arneja, MD, MBA
Diane E. Bloomfield, MD; Elaine A. Dinolfo, MD, MS 230 Coagulation Disorders, 1858
208 Wheezing, 1670 Michael U. Callaghan, MD; Madhvi Rajpurkar, MD
Alfin G. Vicencio, MD; Joshua P. Needleman, MD 231 Colic, 1868
Rebecca Baum, MD
232 Colorectal Disorders, 1870
Part 7
Marc A. Levitt, MD; Jose M. Garza, MD; Alberto Pena, MD;
SPECIFIC CLINICAL PROBLEMS Taiwo Lawal, MD
209 Acne, 1681 233 Common Cold, 1881
Catherine Chen, MD; Judith V. Williams, MD Howard Fischer, MD
210 Adjustment Disorder in Children and 234 Congenital and Acquired Heart Disease, 1883
Adolescents, 1688 Michael A. McCulloch, MD; Robert J. Gajarski, MD, MHSA
George Alvarado, MD; Danielle Laraque, MD
235 Contact Dermatitis, 1917
211 Adrenal Dysfunction, 1692 Jonette E. Keri, MD, PhD; Linda S. Nield, MD
Phyllis W. Speiser, MD
236 Contagious Exanthematous Diseases, 1920
212 Allergic Rhinitis, 1701 Dennis L. Murray, MD; Jennifer Vodzak, MD;
Frank S. Virant, MD Lilly Cheng Immergluck, MD, MS
213 Altitude Sickness, 1705 237 Conversion Reactions and Hysteria, 1927
Eric C. Walter, MD, MSc; Andrew M. Luks, MD Gregory E. Prazar, MD
214 Amblyopia and Strabismus, 1710 238 Cystic and Solid Masses of the Face and
Leonard B. Nelson, MD; Brandon Johnson, MD; Neck, 1933
Mary O’Hara, MD Neil E. Herendeen MD; Peter Szilagyi, MD, MPH
215 Animal and Human Bites, 1716 239 Cystic Fibrosis, 1936
Neil E. Herendeen, MD; Peter Szilagyi, MD, MPH Donna Beth Willey-Courand, MD; Bruce C. Marshall, MD, MMM
216 Anorexia Nervosa, Bulimia Nervosa, and 240 Dental Problems, 1948
Other Eating Disorders, 1719 Martha Ann Keels, DDS, PhD; Melinda B. Clark, MD
Marcie Schneider, MD; Martin Fisher, MD
Contents li

241 Diabetes Mellitus, 1952 263 Hemolytic-Uremic Syndrome, 2125


Asma Javed, MBBS; W. Frederick Schwenk II, MD; Horacio Esteban Adrogue, MD; Joseph Angelo, MD
Peter Tebben, MD
264 Henoch-Schönlein Purpura, 2128
242 Diaper Rash, 1962 Horacio Esteban Adrogue, MD; Nicole Hayde, MD, MS
Daniel Krowchuk, MD
265 Hepatitis, 2131
243 Disorders of Sex Development, 1968 Winita Hardikar, MBBS, PhD; Kathleen B. Schwarz, MD
Lindsey A. Loomba-Albrecht, MD; Dennis M. Styne, MD
266 Herpes Infections, 2144
244 Down Syndrome: Managing the Child Lindsey K. Grossman, MD; Yaron Ivan, MD
and Family, 1976
267 Human Herpesvirus-6 and Human
Marilyn J. Bull, MD
Herpesvirus-7 Infections, 2149
245 Drug Eruptions, Erythema Multiforme, Joshua R. Watson, MD; Asuncion Mejias, MD, PhD, MSCS
Stevens-Johnson Syndrome, 1984
268 Human Immunodeficiency Virus Infection and
Lauren Henderson, MD; Judith V. Williams, MD
Acquired Immunodeficiency Syndrome, 2153
246 Drug Interactions and Adverse Effects, 1992 Michael T. Brady, MD; Deborah Persaud, MD;
Gitte Larsen, MD, MPH; Jared Cash, BS, PharmD William Moss, MD, MPH
247 Encopresis, 1995 269 Hydrocephalus, 2162
Barton D. Schmitt, MD Robert M. Lober, MD, PhD; Sonia Partap, MD, MS
248 Enterovirus and Evolving Infections, 2001 270 Hyperthyroidism, 2167
Dennis Cunningham, MD; Chokechai Rongkavilit, MD; Nicholas Jospe, MD
Kanagasabai Udhayashankar, MD, MPH;
271 Hypocalcemia, Hypercalcemia,
Michelle L. Niescierenko, MD
and Hypercalciuria, 2171
249 Enuresis, 2005 Edna Mancilla, MD; Michael A. Levine, MD, MACE
Franca M. Iorember, MD, MPH
272 Hypospadias, Epispadias, and
250 Fetal Alcohol Spectrum Disorders, 2011 Cryptorchidism, 2180
Leigh Anne Flore, MD, MS Brian Inouye, MD; Ali Tourchi, MD; John P. Gearhart, MD
251 Foreign Bodies of the Ear, Nose, Airway, and 273 Hypothyroidism, 2184
Esophagus, 2021 Craig C. Orlowski, MD
Catherine C. Skae, MD; Sanjay R. Parikh, MD
274 Immune (Idiopathic) Thrombocytopenia
252 Fractures and Dislocations, 2027 Purpura, 2189
R. Scott Strahlman, MD Jawhar Rawwas, MD
253 Fragile X Syndrome, 2031 275 Infectious Mononucleosis and Other
Robert A. Saul, MD Epstein-Barr Viral Infections, 2194
254 Fungal Infections (Systemic), 2036 Leonard R. Krilov, MD
Kenneth A. Alexander, MD, PhD; Adriana Cadilla, MD; 276 Inflammatory Bowel Disease, 2199
Nadia K. Qureshi, MD Dana Michelle Hines Dykes, MD;
255 Gastroesophageal Reflux Disease, 2063 Shehzad Ahmed Saeed, MD
Jenifer R. Lightdale, MD, MPH 277 Insect Bites and Infestations, 2203
256 Gastrointestinal Allergy, 2076 David H. Stein, MD, MPH; Nancy K. Barnett, MD
Minou Le-Carlson, MD; John A. Kerner Jr, MD 278 Intellectual Disability, 2208
257 Gastrointestinal Obstruction, 2081 Randall A. Phelps, MD, PhD; William I. Cohen, MD
Jeffrey S. Mino, MD; Rosebel Monteiro, MD; 279 Iron-Deficiency Anemia, 2217
Anthony Stallion, MD Lakshmanan Krishnamurti, MD
258 Giardiasis, 2094 280 Kawasaki Disease, 2228
Craig M. Wilson, MD Mary Anne Jackson, MD
259 Gluten-Sensitive Enteropathy 281 Klinefelter Syndrome, 2235
(Celiac Sprue), 2097 Parul Jayakar, MD; Michail Spiliopoulos, MD
Anca M. Safta, MD; John A. Kerner Jr, MD
282 Labial Adhesions, 2240
260 Guillain-Barré Syndrome, 2104 Linda S. Nield, MD
Lalitha Sivaswamy, MD
283 Lead Poisoning, 2242
261 Hemangiomas, 2110 Michael Weitzman, MD
Jugpal S. Arneja, MD, MBA; Alex Benson, MBBS, MSc;
Mirko S. Gilardino, MD, MSc 284 Learning Disorders, 2246
Laura L. Bailet, PhD
262 Hemoglobinopathies and Sickle Cell
Disease, 2117 285 Leukemias, 2253
Meera Chitlur, MD; Sharada A. Sarnaik, MD Veronika Polishchuk, MD; Michael Roth, MD;
E. Anders Kolb, MD
lii Contents

286 Lipid Abnormalities, 2269 309 Pectus Excavatum and Pectus Carinatum, 2490
Jorge A. Alvarez, MD, PhD; Tracie L. Miller, MD; Jeffrey S. Mino, MD; Anthony Stallion, MD;
Sarah E. Messiah, PhD, MPH; Steven E. Lipshultz, MD Rosebel Monteiro, MD
287 Lyme Disease, 2283 310 Pertussis (Whooping Cough), 2493
H. Cody Meissner, MD Camilla Sabella, MD
288 Medical Errors, Adverse Events, and 311 Pharyngitis and Tonsillitis, 2498
Patient Safety, 2287 Russell W. Steele, MD
Daniel R. Neuspiel, MD, MPH 312 Phimosis, 2502
289 Meningitis, 2295 A. Barbara Oettgen, MD, MPH
Geoffrey A. Weinberg, MD; Ann M. Buchanan, MD, MPH 313 Pierre Robin Sequence, 2505
290 Meningoencephalitis, 2309 Elizabeth A. Sellars, MD; Robert J. Hopkin, MD
Richard Young, MD, MPH 314 Pinworm Infestations, 2509
291 Metabolic Disorders Beyond the Newborn Craig M. Wilson, MD
Period, 2315 315 Pneumonia, 2510
Carol Lynn Greene, MD
Michael Light, MD
292 Münchausen Syndrome by Proxy: Medical 316 Positional Deformational Plagiocephaly, 2522
Child Abuse, 2331 Deepak M. Kamat, MD, PhD; Ahdi Amer, MD
Meggan Goodpasture, MD; Sara H. Sinal, MD
317 Post-traumatic Stress Disorder, 2526
293 Muscular Dystrophy, 2344 Judith A. Cohen, MD; David J. Kolko, PhD
Richard T. Moxley III, MD; Emma Ciafaloni, MD
318 Prader-Willi Syndrome, 2531
294 Nephritis, 2358 Eileen Dolan, MD; Susan Wiley, MD
William S. Varade, MD
319 Preseptal and Orbital Cellulitis, 2537
295 Nephrotic Syndrome, 2368 Ellen R. Wald, MD
William S. Varade, MD
320 Psoriasis, 2543
296 Neural Tube Defects, 2374 Jennifer L. Reeve, MD, PhD; Ginette A. Hinds, MD;
Heidi Castillo, MD Richard J. Antaya, MD
297 Neurocutaneous Syndromes, 2379 321 Pyloric Stenosis, 2551
Dwayne E. Dove, MD; Michael L. Smith, MD Sushma Reddy, MD; Deepak M. Kamat, MD, PhD
298 Obesity and Metabolic Syndrome, 2396 322 Renal Tubular Acidosis, 2554
Helen Chiehyu Wang, MD; Sheila Gahagan, MD, MPH Ronald Kallen, MD
299 Obstructive Uropathy and Vesicoureteral 323 Rheumatic Fever, 2572
Reflux, 2406 Welton M. Gersony, MD; Thomas J. Starc, MD, MPH
Hiep T. Nguyen, MD
324 Rheumatologic Diseases, 2578
300 Ocular Trauma, 2415 David M. Siegel, MD, MPH; Harry L. Gewanter, MD;
Rajesh C. Rao, MD; Lisa Bohra, MD; John D. Roarty, MD, MPH Shashi Sahai, MD
301 Oliguria and Anuria, 2423 325 Rocky Mountain Spotted Fever, 2592
Amrish Jain, MD; Tej K. Mattoo, DCH, MD Robert T. Seese, MD; Lara Danziger-Isakov, MD, MPH
302 Oppositional Defiant Disorder, 2427 326 Seborrheic Dermatitis, 2597
Martina B. Albright, PhD; Sophia L. Maurasse, MD; Elizabeth Alvarez Connelly, MD; Lawrence A. Schachner, MD
J. Stuart Ablon, PhD
327 Seizure Disorders, 2599
303 Osteochondroses, 2441 Sarah M. Roddy, MD; Margaret C. McBride, MD
Donna M. Pacicca, MD
328 Septic Arthritis, 2617
304 Osteomyelitis, 2446 Stephanie Yee-Guardino, DO; Johanna Goldfarb, MD
Stephanie Yee-Guardino, DO; Johanna Goldfarb, MD
329 Sexual Abuse of Children, 2620
305 Otitis Media and Otitis Externa, 2452 John M. Leventhal, MD; Andrea Gottsegen Asnes, MD, MSW
Tina Q. Tan, MD
330 Sexually Transmitted Infections, 2628
306 Pancreatitis, 2458 Alain Joffe, MD, MPH
James E. Squires, MD, MS; Samuel A. Kocoshis, MD
331 Sinusitis, 2652
307 Papulosquamous Diseases, 2466 Tina Q. Tan, MD
Jane Sanders Bellet, MD
332 Spina Bifida, 2655
308 Parasitic Infections, 2470 Amy Houtrow, MD, PhD, MPH
Nahed Abdel-Haq, MD; Pimpanada Chearskul, MD;
Yaseen Rafee, MD; Basim I. Asmar, MD 333 Spinal Deformities, 2663
John T. Anderson, MD
Contents liii

334 Sports Musculoskeletal Injuries, 2675 357 Drug Overdose, 2831


Nirupama Kannikeswaran, MBBS; Srinivasan Suresh, MD, MBA Angela Lumba-Brown, MD
335 Stomatitis, 2686 358 Envenomations, 2838
Linda S. Nield, MD Shireen Banerji, PharmD; Alvin C. Bronstein, MD
336 Substance Use Disorders, 2690 359 Esophageal Caustic Injury, 2857
Sarah Bagley, MD; Sharon Levy, MD, MPH Robert L. Ricca, MD; George T. Drugas, MD
337 Sudden Unexpected Infant Death, 2695 360 Head Injuries, 2862
Rachel Y. Moon, MD Prashant Mahajan, MD, MPH, MBA; Sean Indra, MD
338 Tobacco and Nicotine Use, 2698 361 Heart Failure, 2868
Susanne E. Tanski, MD, MPH Paolo G. Rusconi, MD; William Harmon, MD;
James D. Wilkinson, MD, MPH; Steven E. Lipshultz, MD
339 Tonsillectomy and Adenoidectomy, 2704
James J. Burns, MD, MPH; D. Gary Griffin, MD, MPH; 362 Hypertensive Emergencies, 2878
Tara Smith, PharmD; Stephanie Slagle, MD, MPH, MS; Srinivasan Suresh, MD, MBA; Usha Sethuraman, MD
Evelyn A. Kluka, MD
363 Hypoglycemia, 2881
340 Toxic Shock Syndrome, 2712 Srinivasan Suresh, MD, MBA; Indumathi Santhanam,
Chokechai Rongkavilit, MD MD, DCH
341 Tuberculosis, 2718 364 Increased Intracranial Pressure, 2888
Ann M. Loeffler, MD; Mark N. Lobato, MD M. Mohsin Shah, MD; Matthew D. Smyth, MD
342 Turner Syndrome and Noonan Syndrome, 2732 365 Acute Kidney Injury, 2895
Jonathan C. Howell, MD, PhD; Philippe Backeljauw, MD Stuart L. Goldstein, MD; Horacio Esteban Adrogue, MD
343 Umbilical Anomalies, 2745 366 Meningococcemia, 2899
Robert W. Marion, MD; Joy Samanich, MD Mary T. Caserta, MD
344 Urinary Tract Infections, 2748 367 Physical Abuse and Neglect, 2905
Gaurav Nanda, MD; Timo Jahnukainen, MD, PhD; Howard Dubowitz, MD, MS; Martin A. Finkel, DO
Abhay Vats, MD
368 Pneumothorax and Pneumomediastinum, 2918
345 Verrucae (Warts), 2757 C. Michelle Zebrack, MD; Susan L. Bratton, MD, MPH
Catherine Chen, MD; Judith V. Williams, MD
369 Poisoning, 2924
346 Vitamin D Inadequacy, 2763 Jeffrey S. Fine, MD
Adekunle Dawodu, MBBS; Carol L. Wagner, MD
370 Psychiatric Emergencies: Suicidality,
Agitation, Psychosis, and Disaster
Exposure, 2950
Part 8 Heather J. Walter, MD, MPH; David R. DeMaso, MD
CRITICAL SITUATIONS 371 Rape, 2964
347 Acute Surgical Abdomen, 2771 Marianne E. Felice, MD; Christine E. Barron, MD
Michael D. Klein, MD
372 Severe Acute Asthma (Status Asthmaticus), 2971
348 Airway Obstruction, 2777 Alan R. Schroeder, MD; David N. Cornfield, MD
Carol Conrad, MD; David N. Cornfield, MD
373 Shock, 2976
349 Altered Mental Status, 2786 Timothy Cornell, MD; Tsovinar Arutyunyan, MD;
Rene J. Forti, MD; Jeffrey R. Avner, MD Joseph R. Custer, MD
350 Anaphylaxis, 2791 374 Status Epilepticus, 2984
Elizabeth Secord, MD; Michael R. Simon, MD Sarah M. Roddy, MD; Margaret C. McBride, MD
351 Appendicitis, 2796 375 Thermal Injuries, 2987
R. Scott Strahlman, MD Robert L. Sheridan, MD
352 Croup (Acute Laryngotracheobronchitis), 2799
Caroline Breese Hall, MD; William J. Hall, MD
APPENDICES
Appendix A: Pediatric Cardiopulmonary
353 Dehydration, 2805 Resuscitation, 2995
Prashant Mahajan, MD, MPH, MBA Élise W. van der Jagt, MD, MPH
354 Diabetic Ketoacidosis, 2813 Appendix B: Outpatient Procedures, 3027
Alaa Al Nofal, MD; W. Frederick Schwenk II, MD; Timothy Cornell, MD; John P. Schmidt, MD;
Peter Tebben, MD Joseph R. Custer, MD
355 Disseminated Intravascular Coagulation, 2819 Appendix C: Formulas and Reference Range
Steven W. Pipe, MD; Anjali A. Sharathkumar, MBBS, MD, MS Values, 3047
356 Drowning and Near Drowning (Submersion Lamia Soghier, MD
Injuries), 2826 Index, 3079
Lorry R. Frankel, MD
PART 1

Delivering
Pediatric Health
Care
1 Health Care Delivery System
2 Practice Organization
3 Information Systems in Pediatric Practice
4 Evidence-based Medicine
5 Quality Improvement in Practice
6 Medical Home Collaborative Care
7 Planned Coordinated Care to Support the Medical Home
8 Health Literacy
9 Partnering With Families in Hospital and Community Settings
10 Family-Centered Care of Hospitalized Children
11 Ethical and Legal Issues for the Primary Care Physician
12 Emergency Care

1
several decades. These concerns culminated most re-
Chapter 1
cently in the 2010 passage of the Patient Protection
HEALTH CARE DELIVERY and Affordable Care Act of 2010 (ACA), which is
viewed as the most comprehensive package of changes
SYSTEM and reforms to the US health system in decades.
Christopher B. Forrest, MD, PhD; Jessica Hawkins, MS; Although most children have health insurance cov-
Evan S. Fieldston, MD, MBA, MS erage through their parents’ employer-based health
insurance or another private source (54%), many chil-
dren (37%) have publicly sponsored coverage through
Health care services accessibility, the content and Medicaid and the Children’s Health Insurance Pro-
quality provided, and outcomes occur within the con- gram (CHIP). On average, children younger than
text of the health care delivery system. Findings from 18 years receive one-fifth of the public spending on
child health services research provide pediatricians health services. Despite their representing one-third
with an increasingly accurate and complete picture of of the population, just 15% of personal health care
how health care affects child health, development, and spending ($285 billion, 2010 data) was on children.
well-being. Understanding how pediatric services im- This equates to $3,628 per child, which is 60% of the
prove child health should begin with examining the spending on 19- to 64-year-olds and one-fifth of the
structure of the delivery system and processes that spending on those older than 65 years. As with adults,
occur once health professionals and patients interact. the largest category of spending for children’s health
This chapter uses a structure-process-outcome care was on hospital services ($121 billion) followed
framework to describe the health care delivery system by physician and clinical services ($76 billion). Increas-
and to analyze its effects on children. Structure refers ing numbers of children are taking prescription medi-
to the organizational and financial arrangements that cations, with rising expenditures in that area over time
are present before health professionals and patients ($18 billion in 2010), which is also similar to adults.
interact. Structural elements include the pediatric Also, like adults, a small percentage of children con-
workforce, delivery sites (including the medical home), sume a disproportionate share of health spending. For
information technology, and financing of services. The example, in the Medicaid and CHIP programs, the top
delivery, or process, of care occurs when patients 10% of enrollees consumed 72% of total spending.
come into contact with providers or suppliers. The Two-thirds of these children have chronic conditions.
number and content of visits (utilization), the costs of
these services, patients’ evaluations of and satisfaction Child Health Care Delivery Sites
with these services, and the volume and types of surgi- Children receive health care services in a wide variety
cal procedures are all examples of processes of care. of inpatient and outpatient settings. Although home
The end results of the health care delivery process are visits and home-based care were once commonplace
patient outcomes: changes in health, functional status, in the United States, most pediatric professionals no
and well-being. The degree to which health care is longer make house calls. Select populations of higher-
consistent with the best available medical evidence risk families (eg, teen mothers) or higher-risk infants
and linked to positive and desired health outcomes (eg, those with poor weight gain, borderline elevated
determines the level of quality of care. bilirubin in newborns) may receive home care visits,
but most formal medical care is not provided at home.
In other countries, however, nurse home visitation,
HEALTH CARE DELIVERY SYSTEM particularly for families of newborn and infant chil-
Overview and Financing dren, is a routine part of pediatric primary care.
Health care services in the United States are delivered
within a complex system. In 2013, the United States Inpatient Care Facilities
spent $2.9 trillion on health care, amounting to 17.4% Hospitals have changed dramatically during the past
of total economic output for the nation, and equal to 20 years in response to financial pressures to reduce
$9,255 per person. The ultimate source of all funding lengths of stay and rates of admission. Many hospitals
for health care is from a portion of workers’ total com- now offer a wide range of services across multiple
pensation directed to health benefits or from taxes sites integrated in a network, including inpatient care,
collected. Health care services are consumed by indi- outpatient diagnostic procedures, surgery, and outpa-
viduals but paid for through a combination of private tient physician visits. Up to 28% of hospitals are part
and public insurance coverage, out-of-pocket spend- of systems, defined by the American Hospital Associa-
ing, and public health programs. Over one-half (55%) tion (AHA) as “a group of hospitals, physicians, other
of all health care is directly paid for by the private providers, insurers and/or community agencies that
sector, but indirect financing via tax deductions means work together to coordinate and deliver a broad spec-
that the federal, state, and local governments actually trum of services to their community.” Whereas all in-
contribute more than half of all spending (54% if the patient care occurs in hospitals, hospital care can no
federal tax deduction for health insurance premiums longer be equated with inpatient care. Many hospitals
is moved from the private side to the public side of the have become integrated delivery systems that provide
ledger). Growth in health care spending in the United primary care, specialty care, ancillary services, and
States has been a significant concern during the past inpatient care.

PART 1: DELIVERING PEDIATRIC HEALTH CARE 3


4 PART 1: DELIVERING PEDIATRIC HEALTH CARE

There are 5,686 registered hospitals in the United child’s primary medical home. This requires communi-
States, including 4,986 nonfederal, short-term general cation between the hospital physicians and the primary
and specialty hospitals. The remaining hospitals are care pediatrician, as well as involvement of the family,
psychiatric (406), federal (213), long-term care (81), meticulous and seamless hand-offs, and clear delinea-
and parts of institutions, such as prisons or college tion of responsibilities at each stage in the care process.
infirmaries. Among the nonfederal short-term hospi- Methods of payment for hospital services continue
tals, 2,904 are private not-for-profit hospitals (58%), to evolve in the United States. Changes occurred in
1,010 (20%) are state- or local-government-owned the early 1980s when the prospective payment system
hospitals, and 1,060 (20%) are for-profit (investor- was instituted in the Medicare program. Hospital pay-
owned) hospitals. Not-for-profit status exempts insti- ment shifted from a cost basis (payment for each
tutions from paying taxes and allows them to borrow service billed) to a fixed fee based on the principal
money in the tax-exempt bond market. In return, problem managed during the hospitalization (known
nonprofit hospitals are expected to provide commu- as the diagnosis-related group [DRG]). This DRG-
nity benefit, such as unreimbursed care to patients based payment system paid hospitals the same amount
without insurance or community health programs. of money for all patients with the same diagnosis and
Twenty percent of hospitals are teaching hospitals af- severity, regardless of how long they stayed or what
filiated with one of the nation’s 134 allopathic medical services were provided. DRGs provided financial in-
schools. Most teaching hospitals are urban, whereas centives to shorten lengths of stay. The introduction of
most of the nation’s rural hospitals are small institu- the DRG-based hospital payment system stimulated
tions with fewer than 100 beds. the proliferation of large outpatient specialty and sur-
Approximately 250 (5%) of US hospitals are consid- gical centers. Today the United States has one of the
ered children’s hospitals. There are approximately 50 lowest hospital admission rates and among the lowest
freestanding acute care children’s hospitals, nearly all of average hospital occupancy rates throughout all de-
which are teaching hospitals. There are approximately veloped nations. Another hospital payment model is
100 joint children’s hospitals, which are large pediatric per diem, whereby hospitals are paid a set amount for
programs in larger medical centers. Approximately 40 each day a patient is hospitalized, again regardless of
freestanding children’s rehabilitation, specialty, and what services are provided. Contracts may have
convalescent hospitals provide care to children in 16 higher payments for days in intensive care units but
short-term facilities and 24 long-term facilities. Finally, may also have blended rates that pay the same amount
approximately 50 freestanding children’s psychiatric for any location or level of service. Per diem contract-
hospitals provide mental health services to children and ing is typically linked to utilization review, in which
adolescents at 10 short-term and 40 long-term care fa- case insurers review the level of care provided and
cilities. The remaining majority of inpatient pediatric need for hospital services. Children’s hospitals face an
admissions occur at general hospitals. array of payment methods, unlike adult hospitals,
In 2010, there were 35.1 million hospital discharges which primarily encounter Medicare DRG payments,
in the United States, including 3.8 million newborns. or private insurance contracts that echo the DRG
Excluding newborn admissions, there are approxi- structure from Medicare. DRG or case-based payment
mately 2.0 million hospitalizations per year for infants is a growing trend in pediatric hospitals and is ex-
and children younger than 16 years old. Children’s pected to increase the need for hospitals to operate
hospitals account for 40% of pediatric inpatient days efficiently.
and 50% of the costs of childhood hospitalization in
the United States ($10 billion each year). The remain- Outpatient Care Facilities
ing majority of children, therefore, are hospitalized in Outpatient visits for children occur in a large variety
general hospitals with and without pediatric units. of publicly and privately owned facilities. Approxi-
Many smaller, rural hospitals are no longer operating mately 88% of primary care visits among children oc-
pediatric units because of insufficient demand. cur at physician’s offices, 8% in hospital primary care
According to data from the Children’s Hospital As- clinics, and 4% in community health centers. Children
sociation (formerly National Association of Children’s may also receive care in school-based health centers,
Hospitals and Related Institutions), children’s hospi- emergency departments, urgent-care centers, and,
tals care for the sickest pediatric patients. Children’s most recently, retail-based clinics located in drug
hospitals have diverse patient populations, with acute stores and stores such as CVS, Wal-Mart, and Target.
illness or acute exacerbation of illness accounting for Unfortunately, services that occur in these varied set-
many short admissions and complex illness or com- tings are challenging to coordinate with services for
plex chronic conditions accounting for longer stays the same patient that occur in the medical home.
among fewer admissions. The median length of stay at
children’s hospital is in the 2- to 3-day range, but the Practice Organizations and Locations
mean is in the 5- to 7-day range. Children residing in Pediatric physician organizations can be categorized
low-income communities are more likely to be admit- into solo practice, group practice (single-specialty prac-
ted to the hospital via the emergency department tices with general pediatricians only and multispecialty
compared with those from higher-income residences. groups, which include general pediatrics and other
Coordination of care for hospitalized children is a types of specialties), health maintenance organizations,
complex task that involves many health professionals. hospital-based practices, and freestanding emergency
Because most pediatric inpatient care is infrequent and departments. The practice locations for office-based
brief, it is important that it be managed and linked to the pediatricians in 2013 are shown in Table 1-1.
CHAPTER 1 • Health Care Delivery System 5

Associations (IPAs) or Group Practice Without Walls


Table 1-1 Practice Settings (GPWW). An IPA is a third-party physician-directed
for Office-Based joint venture that allows contract negotiations and
Pediatricians, 2013 collaborative activities by practices that maintain
separate tax identifications. It is the loosest form of
TYPE OF PRACTICE PERECENTAGE OF multiple-practice organization, primarily formed to
SETTING PRACTICE TYPE gain contracting leverage for physician services with
managed care organizations. A GPWW is formed
Solo/2-physician group 12 when private physicians form a new legal entity to
Pediatric group, 3-10 physicians 26 develop and control a professional corporation but
Pediatric group, ⬎10 physicians 6 maintain separate office locations and direct opera-
Multiple-speciality group 12 tional control of their support staffs, equipment, re-
Health maintenance organiza- 2 cords, and patient relationships. The GPWW has more
tion (staff/group model)
centralized control, with a board and management
Hospital/clinic 14
structure, than does an IPA. In recent years, hospitals
Medical school 18
Community health center 3
and health systems have also increased their purchase
Other (eg, freestanding 5 of physician practices, an activity seen in both adult
emergency department) and pediatric ambulatory practices.
Community health centers are one component of
From American Academy of Pediatrics Periodic Survey of Fellows. the federal government’s consolidated Health Center
Pediatrician’s Practice and Personal Characteristics: US only, 2013. Percent Program that also includes homeless health centers,
of Pediatricians by Primary Employment Setting (Table 3). Available at: centers in public housing, and migrant health centers.
www.aap.org/en-us/professional-resources/Research/pediatrician-surveys/
Pages/Personal-and-Practice-Characteristics-of-Pediatricians-US-only.aspx. For more than 35 years, the Bureau of Primary Health-
Accessed September 8, 2015. care within the US Department of Health and Human
Services, the Health Resources and Services Adminis-
tration, has provided federal support for health center
programs. These resources are used to fund services
Once common, solo practice is now in decline. During for medically underserved populations, particularly
the interval between 1996 and 2005, the proportion of uninsured children and their families, immigrant and
visits to physicians who were in solo ⫽ 2-physician prac- seasonal farm workers and their families, homeless
tices decreased 8.2%, whereas visits to physicians who persons, public housing residents, and those needing
were part of a group practice with at least 6 physicians school-based health care. Community health centers
increased by 4.5%. Historically, a single physician could focus on providing comprehensive primary health
provide high continuity of care for patients. Although this care to persons in medically underserved areas. The
autonomy and continuity appeal to some physicians, they proportions of visits made to community health
also require an individual facility with the operational and clinics and hospital clinics are much higher for the
financial aspects of health care delivery, which have uninsured and minority racial and ethnic groups be-
grown increasingly complex. Solo physicians also have a cause of poorer access to physician practices for these
more difficult time arranging for after-hours, weekend, groups. There are 1,250 community health centers that
and vacation coverage than their group practice peers. care for 20 million Americans with limited financial
Pediatricians entering the medical marketplace are in- resources. It is estimated that they save the nation up
creasingly concerned not only with their incomes but also to $17.6 billion through preventive care and decreased
with such quality-of-life factors as time spent in the office, use of emergency departments. Community health
vacation, and coverage flexibility. Other benefits of group centers have received significant increases in funding
practice include administrative economies of scale, more during the past decade, and several provisions in the
stable cash flow, stronger negotiating position with ACA provided funds and demonstration projects that
health plans, greater financial reserves that may facilitate include them.
investments in practice improvements such as health in- Several other public sector safety-net provider sys-
formation technology, and the possibility of physicians tems offer health care services for uninsured and un-
developing areas of special expertise, which is useful for derinsured pediatric patients. These entities include
both primary care and specialty practices. local public health departments, community and mi-
Private pediatric providers may be paid through grant health centers, public hospital systems, and
fee-for-service payments for each office visit or outpa- school-based clinic systems. In addition, many not-
tient service provided. This is the predominant form of for-profit organizations assist in meeting the health
payment for non–managed care private insurance pri- care needs of uninsured and underinsured children.
mary care and nearly all specialty care. Capitated pay-
ments consist of fixed dollar payments to physicians Access to and Utilization of Outpatient
on a per-member per-month basis, regardless of ac- Services
tual use by patients. This form of contracting is most More than three-quarters of children have at least 1
common for Medicaid managed care programs and visit to a physician’s office each year, 6% visit physi-
commercial health maintenance organizations. To cians in a hospital clinic, and 18% have 1 or more
gain efficiencies of scale for administrative expenses emergency department visits. Many studies have docu-
and greater leverage for negotiations with payers, mented that children make fewer than the number of
practices may organize into Independent Practice health assessment visits recommended by the American
6 PART 1: DELIVERING PEDIATRIC HEALTH CARE

Academy of Pediatrics (AAP). Barriers to accessing rather than rates per child. Although certain condi-
outpatient services are a chief cause of this underuse. tions may be better suited to care of pediatric special-
A most important barrier to accessing care is limited ists, there are limited data on improved outcomes for
availability of pediatric providers in some geographic children cared for by pediatric specialists versus adult
regions, which has at its root decreased financing of specialists, especially among older children and youth.
pediatric care. A shortage of pediatricians in rural One exception, among several, is the field of cardiol-
areas is linked to the maldistribution of pediatricians ogy, where adult cardiologists are generally not trained
nationally, in part because of challenges of financial to care for patients with congenital heart disease. As
viability in rural areas. The effects of payment levels are pediatric care increases survival of patients such as
also seen in all parts of the country for other services, these, new demand will emerge for specialists who can
including pediatric specialty care, mental health ser- transition children into adolescence and adulthood,
vices, and dentistry. For example, use of dentists in the with knowledge of the physiology and pathology of
United States remains low, with just 40% of children diseases and their adult sequelae, for example, physi-
seeing a dentist annually, a consequence of lack of ad- cians trained in both internal medicine and pediatrics
equate financing for these services. For other types of (med-peds physicians).
services, children’s insurance may not fully cover the On average, 1 certified general pediatrician can be
office visit. (Lack of coverage among insured persons found for every 1,300 children throughout the United
for needed services is a problem that has been labeled States. This ratio is generally deemed to be an ade-
underinsurance.) Additional access barriers to seeking quate supply of pediatricians overall, particularly
outpatient care include geographic access problems given the higher growth in the number of pediatri-
(lack of pediatricians in the community or difficulty cians compared with the rate of growth of children.
traveling to the practice site) and organizational access However, the statistic does not reflect important re-
problems (eg, for non-native English speakers, a lack gional variation in the supply of pediatricians, with
of interpreters, limited after-hours care, or long many rural and inner-city areas experiencing child
appointment waits). health professional shortages. Approximately 1 in 10
One-parent families and those with 2 working par- children live in an area without a pediatrician. As of
ents make up most of the families in the United States. 2006, 1 million children lived in areas with no local
To maintain access to services with these logistical pediatrician. Eighteen states had ABP-certified
barriers in mind, practices have extended their office physician-to-child ratios of less than 0.1 per 100,000
hours to provide coverage during evenings and on children (which is rounded to 0 by the American
weekends, in addition to on-call coverage at night. Board of Pediatrics [ABP]) in 1 of 13 fields: adolescent
This trend is a departure from the office hours that medicine (8), cardiology (1), child abuse pediatrics (7)
pediatricians traditionally provided. After-hours cov- critical care medicine (1), development-behavioral
erage is provided in settings that are convenient, such medicine (4), emergency medicine (4), endocrinology
as using the pediatrician’s own office or an examina- (1), gastroenterology (1), hematology-oncology (1), in-
tion suite at the local community hospital. Many fectious diseases (3), nephrology (3), pulmonology (3),
pediatricians join with their colleagues in sharing and rheumatology (12). Although not considered a
after-hours or weekend coverage. They take turns pediatric subspecialty, there are also shortages for
covering the telephone and meeting patients’ needs, child neurology and child and adolescent psychiatry.
with prompt referral back to the patient’s designated Only 8% of pediatricians in the United States prac-
physician. This approach provides efficient off-hours tice in rural communities to care for the 19% of the
medical care and affords each physician more time for childhood population that lives there. By contrast,
other activities. the 30% of children who live in large metropolitan
areas are cared for by almost 54% of practicing pe-
Distribution, Practice Locations, and Access diatricians. The remaining 37% of pediatricians prac-
to Pediatric Care tice in suburban settings, serving 34% of the nation’s
Pediatrics is widely viewed as the principal specialty children. Several factors have led to this maldistribu-
responsible for setting child health care policy and tion of pediatricians, but financial viability of practice
ensuring the health of the nation’s children. Between in rural areas is one challenge. Except for pediatri-
1996 and 2006, the percentage of visits to general pe- cians practicing in sparsely populated areas, which
diatricians by children and adolescents aged 17 and have limited hospital and technical support services
younger increased from 61% to 71%, whereas the per- and few pediatric specialists, pediatricians generally
centage of visits to nonpediatric generalists (eg, family practice similarly throughout the United States.
physicians) decreased from 28% to 22%. Notably, be- These professionals, like those in other specialties,
tween 2000 and 2006, the proportion of visits for ado- tend to settle in areas that have a higher per capita
lescents changed most, with 53% of visits to general income.
pediatricians in 2006, up from 38% in 2000. The percent-
age of visits to pediatric specialists for these patients Medical Home
increased from 2% to 5%, whereas the percentage of The pediatric primary care patient-centered medical
visits to nonpediatric specialists declined from 22% to home (PCMH) is important for all children, not simply
12%. These data suggest that more children, especially those who have long-term special health care needs.
adolescents, are receiving care from general and spe- In addition to providing routine preventive services,
cialized pediatricians. These data, however, must be anticipatory guidance, and acute care, the medical
interpreted with caution as they represent proportions, home adds several components to the conventional
CHAPTER 1 • Health Care Delivery System 7

examination room–based model of primary care: reg- pediatric workforce, especially the subspecialty work-
istries of patients with specific diseases to better force; and a geographic maldistribution of physicians,
facilitate ongoing chronic care management; care co- particularly subspecialists but also primary care
ordination processes that link children and families to physicians.
appropriate medical, social, and community services;
active and integrated comanagement between pri- Physicians, Pediatricians, and Pediatric
mary and specialty care; and patient education, par- Specialists
ticularly for patients with chronic and psychological In 2013 the total number of licensed physicians in the
disorders. The medical home should be easily acces- United States was approximately 829,962, with 56,282
sible for patients, promote continuity of care, provide (7%) self-designating as pediatricians. Approximately
a wide range of services to meet most of the needs of 70% of self-designated pediatricians obtain board cer-
children, and coordinate care received in all locations. tification from the ABP, and 53,697 were board certi-
These functions—access, continuity, comprehensive- fied in 2007 according to the American Medical
ness, and coordination—are the core attributes of Association. Among certified general pediatricians,
primary care as defined by the Institute of Medicine. 20,138 (38%) have an additional certificate in a pediat-
Research evidence demonstrates that when these ric subspecialty.
functions are attained at a high level, children are less Across all medical specialties, women constitute
likely to be hospitalized for health problems that might 33% of all physicians, but they represent 60% of pe-
be managed in outpatient settings, families report diatricians. Currently, 73% of pediatric resident train-
greater satisfaction with care, and health care costs ees are women compared with only 30% in 1975.
are reduced. Widespread adoption of the PCMH Historically, more men entered pediatric subspecial-
model, however, calls for a more rational and en- ties, but this is changing. The rise in the number of
hanced payment for primary care services to replace female pediatricians is one of the more impressive and
the current episodic and volume-driven payment important trends shaping the pediatric workforce.
mode. (For a comprehensive discussion regarding the Women are more likely than men to work part-time,
medical home, see Chapter 6, Medical Home Collab- and they spend fewer hours in direct patient care over
orative Care.) their work lives. To maintain the same number of full-
time equivalent physicians, more pediatricians may
Patient Call Centers or After-Hours Programs need to be trained each year in the future if the pro-
Pediatric call centers or after-hours programs (AHPs) portion of women in pediatrics remains as high as it is
have been established in all areas of the United States. now or even increases.
Patients greatly value ready access to medical advice Between 1993 and 2009 the proportion of pediatri-
outside of office hours, a trend that has grown with cians working part-time increased from 11% to 24%.
the rise of families with 2 parents in the workforce. On average, however, the way in which pediatricians
AHPs are staffed by trained personnel on nights, spent their time was constant between these years. In
weekends, and holidays. They give advice for symp- 2010 office-based pediatricians worked 48 hours per
tomatic care and appropriate prescription refills, make week, spending approximately 34 of these hours in
referrals to an emergency facility or to an after- direct patient care, 6 in administration, 3 in academic
hours pediatric office, or advise seeing the patient’s medicine, 2 in research, and 2 in fellowship training.
own pediatrician during office hours. AHPs operate The allocation of time, however, is heterogeneous.
under professional oversight, using standardized Those in predominantly clinical roles may spend all
protocols provided by pediatricians who use their their time on patient care and related administration,
services. In many instances, health care systems whereas those in academic settings may spend 50%
subsidize AHPs on behalf of their network of pediatri- to 80% of their time on research and/or teaching. For
cians because of the efficiency and cost savings attrib- example, only 59% of certified pediatric subspecial-
uted to them. In a large, multicenter study, 65% of ists’ time is spent in direct patient care. The remain-
parents reported no preference about speaking with a der is spent in research, teaching, and administration.
physician or nonphysician for after-hours care, but This is because 60% practice in academic health
28% indicated a preference to speak with a physician. centers, contrasting with fewer than 33% of internal
More than 80% of parents follow through with recom- medicine subspecialists who do so. The perceived or
mendations made by the call center professionals. required need to practice subspecialties in pediatrics
at academic medical centers has implications for geo-
graphic distribution of these physicians, the clinical
PEDIATRIC WORKFORCE work hours they offer, and incentives for choosing
Pediatrics and children’s health care are not synony- the field as a career. Increasing numbers of pediatri-
mous. A pluralistic mix of pediatricians, internal cians practice part-time, with those physicians re-
medicine, family medicine, pediatric specialists, and porting an average of 25 hours per week of direct
nonphysician clinicians provide services to the na- clinical care.
tion’s children. Key trends in the pediatric workforce
include: sustained interest in the field among graduat- Physician Training for Pediatrics
ing medical students; more rapid growth in pediatri- The traditional path to medical practice in pediatrics
cians than the population of children in the United includes completion of 4 years of undergraduate stud-
States; the dominance of women in the field; the im- ies, 4 years of medical school (or more if in a dual-
portance of international medical graduates to the degree program), and 3 years of residency training in
8 PART 1: DELIVERING PEDIATRIC HEALTH CARE

pediatrics. The current structure and processes of The percentage of women enrolled is less than in cat-
medical education are rooted in early 20th-century egorical pediatrics and has been stable over the last
“reforms” following the Flexner report. In the past 2 few years at about 58%. In rural communities or small
decades, questions have been raised about the rele- towns, the med-peds physician may play a role as a
vance of the training model given the current and consultant in the care of high-risk newborns and chil-
future nature of medical science and health care deliv- dren who have a chronic illness or as a hospitalist for
ery. Medical students and physicians also do not children and adults. These physicians may subspecial-
receive training in the economics or business of health ize in fields with larger numbers of children with
care delivery of medical practice. chronic illnesses of childhood who are surviving into
Consumers and providers of health services differ adulthood. In other markets, internal medicine and
in the priorities they place on the 3 main challenges pediatric practices can use the med-peds physician to
of the health care delivery system: ensuring access to attract new patients, especially adolescents and fami-
care, controlling costs, and improving the quality of lies desiring health care for everyone in the same
care. Costs of and access to medical care are of practice. Because med-peds physicians can alter their
prime importance to consumers, who tend to as- practice according to patient demand, the amount of
sume that quality of care will always be good. In pediatric care that these health professionals will pro-
contrast, neither access nor cost has been an impor- vide will likely decrease with the aging of the popula-
tant component of medical school training, which tion and the growing cohort of adult survivors of
focuses almost exclusively on how to make a diagno- congenital and chronic childhood illness. Upon com-
sis; how to support this diagnosis with appropriate pletion of residency, trainees are eligible to sit for the
information from the history, physical examination, pediatric certifying exam (“board eligible”). They may
and laboratory findings; and how to institute treat- enter practice in general pediatrics on an inpatient or
ment that is appropriate to the diagnosis. The nature outpatient basis or continue training in a fellowship
of most educational settings (university based, re- program for further specialization.
search oriented, with generally a highly specialized
faculty) is responsible for a medical educational pro- Pediatric Specialization
cess that focuses largely on the biological bases of In 2014, 59% of first-time general pediatrics test-takers
disease. In contrast, relatively little attention is de- selected a career as a general pediatrician, 30% a ca-
voted to understanding the social, occupational, and reer in a pediatric subspecialty, and 5% a career in
environmental causes of ill health, although issues another nonpediatric specialty. In addition to general
such as these are major determinants of disease and pediatrics, 20 areas of pediatric subspecialization are
dysfunction or patients’ subjective assessment of certifiable by the ABP (Table 1-2). The absolute number
their own health. of subspecialty trainees has nearly doubled since
1999. 1996 and 2003. In 2014–2015, there were 1,541
Residency Training first-year, 1,386 second-year, and 1,293 third-year fel-
After medical school (referred to as undergraduate lows in pediatric subspecialty training. By comparison,
medical education), approximately 14% of medical in 1999–2000, there were 796 first-year fellows (in fewer
school seniors select a pediatric training program specialty training programs). The top 5 career choices
(graduate medical education, or GME). There are among pediatric subspecialty fields are neonatal-
123,310 on-duty residents in the United States, among perinatal medicine, critical care medicine, hematology-
whom 7% are training in pediatrics. In academic year oncology, cardiology, and emergency medicine. Women
2014–2015, there were 199 programs accredited ac- graduating from medical schools more recently are
cording to the Accreditation Council for Graduate more likely than their older female counterparts to
Medical Education, or ACGME for general pediatric choose a subspecialty career, although male physicians
residency training in the United States and another 17 still predominate within most subspecialties.
in Canada. There were 8,979 on-duty pediatric resi- In general, primary care salaries are lower than
dents in academic year 2014–2015 according to the those for specialists, although the differences are not as
ACGME; according to the ABP, there were 9810 resi- stark in pediatrics as in adult medicine. For the first 3 to
dents in training in 2014. These differences are the 5 years after residency, primary care physicians can be
result of trainees in combined programs, such as child expected to have expenses that exceed earnings.
neurology, as well as special tracks, such as research.
When compared with 1999 figures, this growth is a International Medical Graduates
23% increase in the absolute number of pediatric resi- International medical graduates (IMGs) constitute an
dents, a rate of rise that far exceeds the proportional important share of the pediatric workforce. IMGs re-
increase in the number of children in the country. In- ceive their undergraduate medical education abroad
terest in pediatrics as a career choice continues to be but complete their residency in the United States. In
strong. 2014, IMGs accounted for 25% of all general pediatri-
In 1967 the ABP and the American Board of Internal cians (vs 24% of all US physicians). Nearly 1 in 3 board-
Medicine (ABIM) agreed that individuals who had 2 certified pediatric subspecialists are IMGs. Pediatrics
years of general internal medicine and 2 years of gen- is the third-highest specialty among IMGs (8.5%),
eral pediatrics were eligible for board certification in representing growth from 1980 when it was fifth
both specialties. In 2014–2015, there were 79 accred- highest (6.8%). The subspecialties with the greatest
ited for combined med-peds residency in the United proportions of IMGs are geriatric medicine (50%), ne-
States; these programs have 1,477 on-duty residents. phrology (45%), and international cardiology (43%).
CHAPTER 1 • Health Care Delivery System 9

for hospitalized children. A 2009 survey by the Society


Table 1-2 Number of Board-Certified of Hospital Medicine found that there are nearly
Pediatric Subspecialists 30,000 hospitalists in the United States, with an esti-
Through 2014 mated 2,500 who focus exclusively on pediatrics. This
represents rapid growth from 2002, when there were
PEDIATRIC NUMBER an estimated 600 pediatric hospitalists. In 2003, 40%
SUBSPECIALTY* CERTIFIED of pediatricians were affiliated with a hospital that
employed a hospitalist. This proportion is expected to
Adolescent medicine (1994)S 650 continue to grow over the next several years.
Cardiology (1961)S 2,947 Hospitalists are physicians whose main responsibil-
Child abuse and pediatrics (2009)S 324 ity is the general medical care of hospitalized patients
Critical care medicine (1987)S 2,377 and whose responsibilities may also include teaching,
Developmental-behavioral pediatrics 720 research, and administrative duties. Pediatric hospital-
(2002)S
ists spend most of their clinical time on inpatient units,
Emergency medicine (1992)S 2,046
but not in the nursery, subspecialty units, or outpatient
Endocrinology (1978)S 1,635
Gastroenterology (1990)S 1,469
clinics. However, as with adult counterparts, pediatric
Hematology-oncology (1974)S 2,780 hospitalists are taking on additional roles, including
Hospice and palliative care (2008)^ 234 provision of newborn services, comanagement of sur-
Infectious disease (1994)S 1,432 gical patients, and additional training and work in se-
Medical toxicology (1994)S 42 dation and procedural roles. Hospitalists also seem to
Neonatology-perinatal medicine 5,930 be effective teachers in academic centers. Patients are
(1975)S referred by primary care physicians and are referred
Nephrology (1974)S 932 back at the time of hospital discharge. The disadvan-
Neurodevelopmental disabilities 255 tages of this arrangement include a loss of continuity of
(2001)^ care between the primary care physician and the pa-
Pulmonology (1986)S 1,203 tient and a decreased scope of practice among general
Rheumatology (1992)S 364 pediatricians. This requires careful attention to coordi-
Sleep medicine (2007)^ 251 nation of care and communication across the inpatient
Sports medicine (1993)^ 247 and outpatient domains. The use of hospitalists allows
Transplant hepatology (2006)^ 103 for increased productivity by the office-based pediatri-
cian. During office hours, leaving the office with wait-
*Year in parentheses indicates when subspecialty board was established.
S
= certificate of special qualifications
ing patients to see a hospitalized patient is difficult for a
^
= certificate of added qualifications physician. Other reported advantages of hospitalists
From American Board of Pediatrics 2014 Workforce Data: Pediaatric include their competency in technical skills (skills easily
subspecialty Diplomates Certified Through December 31, 2014.
Available at: www.abp.org/sites/abp/files/pdf/workforcebook.pdf.
lost to the physician who visits the hospital only
Accessed September 8, 2015. occasionally), shorter patient hospital stays because of
constant in-hospital supervision, and the immediate
availability of urgent care. (See Chapter 9, Partnering
With Families in Hospital and Community Settings,
The most common countries of citizenship for IMGs and Chapter 10, Family-Centered Care of Hospitalized
are (in rank order, 2007 data): United States (US citizens Children.)
trained abroad), India, Philippines, Mexico, Pakistan,
and the Dominican Republic. Resident and fellowship Nonphysician Clinicians
training of IMGs continues, although the percentage of A large body of research evidence indicates that
first-year pediatric residents who were IMGs declined appropriately trained nonphysician clinicians—nurse
from 33% to 20% from 1991 to 2014. For fellowship, practitioners and physician assistants—provide health
however, large numbers of subspecialty trainees are care for many health conditions that is of equal quality
IMGs, notably in pulmonary disease (92%), nephrology to that provided by physicians. Because they can be
(68%), and geriatric medicine (63%). trained at lower costs to society and their salaries are
lower than those of physicians, many physician orga-
Hospitalists nizations and health maintenance organizations em-
The traditional American system in which primary ploy these professionals as primary care physicians
care physicians have cared for their hospitalized pa- and physician extenders in specialty settings. States
tients is undergoing a dramatic change. The field of are giving more independence to nonphysician clini-
hospital medicine and the role of hospitalists have cians. Restrictions on the work hours of resident phy-
grown rapidly in the past decade, and hospital medi- sicians enacted in 2003 and updated in 2010 by the
cine has been the fastest growing field in pediatrics. ACGME are another driver of the increasing role of
Hospitalists replace primary care physicians in man- nonphysician clinicians. In its official policy statement
aging patients while in the hospital. Factors contribut- on nonphysicians in clinical care, the AAP states, “Pe-
ing to the growth of hospitalists’ role include greater diatricians should respect the contributions of other
complexity of hospital care, need for greater efficiency health care professionals but also acknowledge the
in both outpatient and inpatient settings limiting the appropriate limitations and roles of these profession-
ability to do both, reduced work hours for trainees, als.” Further, “The AAP realizes that nurse practitio-
and demand for attention to high-quality outcomes ners, physician assistants, and other nonphysician
10 PART 1: DELIVERING PEDIATRIC HEALTH CARE

pediatric clinicians may care for children in under- general pediatrician was the daily expert, always on
served areas where patients have limited or no access call in the office for families in need or making frequent
to a physician. However, a pediatrician should oversee house calls and hospital rounds. General pediatricians
these clinicians.” dealt with all minor and most major illnesses. Pediatric
Pediatric nurse practitioners (PNPs) are usually pre- subspecialists were few, usually found only in aca-
pared at the master’s degree level after training in demic medical centers. Concepts such as primary and
nursing. Approximately 90% practice in primary care tertiary pediatric care were less known, and pediatric
settings. A small share may be certified in a specialty, intensivists, neonatologists, and other subspecialists
and recently there have been increases in those prac- did not exist in community hospitals.
ticing in hospital settings. Outpatient PNPs conduct Today, the office-based primary care pediatrician
physical examinations, track medical histories, make practices differently, although still as the specialist
diagnoses, treat minor illnesses and injuries, monitor providing medical care for children. The patient is al-
chronic disease maintenance therapy, and provide an most always seen in the office, rarely in the hospital,
array of counseling and educational services. Inpa- and almost never in the home. The illnesses treated by
tient PNPs are often found in intensive care units and the primary care pediatrician today do not resemble
emergency departments, although also in general those of the past when serious infections and their
medical and surgical units, and provide front-line care sequelae were more common. Today, upper respira-
similar to resident physicians or hospitalists. In many tory tract infections, moderate lower respiratory tract
states, PNPs prescribe medications independently, ad- problems, feeding problems, gastrointestinal upsets,
mit patients to hospitals, and make hospital rounds. and minor trauma account for upward of 85% of ill-
As of 2008, there were 13,384 PNPs in the United ness care. Pediatricians evaluate and diagnose more
States. Most PNPs worked in private practice (39%) serious conditions, coordinate and manage chronic
or an academic medical center (25%). The remainder illnesses, and collaborate with specialists on the care
worked in community hospitals (14%), community of children receiving such services. The primary care
clinics (10%), school-based health clinics (7%), man- pediatrician spends more time on anticipatory guid-
aged care organizations (3%), retail-based or urgent ance, including the promotion of health and well-
care sites (1%), and nurse-managed centers (1%). being in children. A large portion of practice time is
Physician assistants (PAs) are health care profes- spent giving well-child care, dealing with family dy-
sionals licensed to practice medicine with physician namics, and managing the new morbidities of mental
supervision. Similar to nurse practitioners, PAs con- illness, obesity, and school failure. Practices in urban
duct physical examinations, diagnose and treat ill- areas deal with many of these issues with greater fre-
nesses, order and interpret tests, write prescriptions, quency and intensity. The new scope of contemporary
and counsel on preventive health care; they may also pediatric primary care is summarized in Box 1-1.
assist in surgery and in other procedures. Because of Changes in how acute infections are managed or
the close working relationship they have with physi- prevented will have important and perhaps even dra-
cians, PAs are educated in the medical model designed matic effects on the future scope of pediatric practice.
to complement physician training. The number of pe- National policy recommendations to decrease use of
diatric PAs is smaller but growing. In 2009, 2,144 pedi- antibiotics for upper respiratory infections and otitis
atric PAs self-identified. media have led to fewer prescriptions and visits for
these conditions. New vaccines will further reduce the
PROCESSES OF HEALTH CARE burden of acute illnesses in pediatric practice and could
The process of health care consists of the interactions allow pediatricians to provide more comprehensive
between patients and professionals. From the physi- services to enhance child health and development;
cian’s perspective, key processes include identification promote healthy transitions into school, adolescence,
of and screening for new problems; patient education; and adulthood; reduce the suffering associated with
matching appropriate services to a patient’s needs; psychosocial problems; and collaborate with families
diagnosis using cognitive processes, laboratory test- to maximize the chances that all children become
ing, and imaging studies; treatment with watchful flourishing adults.
waiting, information giving and guidance, prescrib-
ing, and therapeutic procedures; follow-up of ongoing Referrals: Linking Primary Care With
problems; referral to specialists and community re- Specialty Care
sources; and admission to the hospital. From the pa- Physicians providing primary pediatric health care as-
tient and family’s perspectives, the key processes of sume responsibility for a broad spectrum of preven-
health care are seeking health care and choosing to tive and curative care and for coordinating the care
use services, disclosing health-related information their patients receive from other physicians. When
and asking questions, self-management for ongoing primary care physicians need assistance in diagnosing
problems, participating in the recommended care and managing difficult cases, desire a specialized test
plan, and assessing treatment effectiveness. or procedure (eg, endoscopy or surgery), or believe
that management of their patients’ health problems
Scope of Pediatric Practice falls outside their scope of practice, they seek consul-
The time a pediatrician spends in office practice re- tation and referral (See Chapter 6, Medical Home
mains challenging and interesting, although it is chan- Collaborative Care). Approximately 2% of all general
neled differently than it was in the past. Through much pediatric visits lead to a referral, and pediatricians
of the early and middle 20th century, the practicing make approximately 1 referral a day. Referrals are also
CHAPTER 1 • Health Care Delivery System 11

BOX 1-1 Scope of Pediatric Primary Care Practice


• Prenatal counseling to families preparing for the birth • Promoting good health habits through advice about
of their child a prudent diet and nutrition, exercise, and dental
• Immunization for all age groups in the practice, with hygiene
prior educational advice as to the benefit, risk, and • Promoting avoidance of bad health habits such as
alternatives sedentary activity, excessive television watching and
• Acute illness management, including watchful waiting, video game playing, and parental smoking
appropriate prescribing, education, and follow-up • Identification and management of developmental and
• Injury prevention by giving advice about seat belts, psychosocial problems, which is composed of screen-
smoke alarms, water safety, home safety, poison ing, talk therapy, medication management, referral to
control, and bicycle helmets and comanagement with behavioral health specialists,
• Minor injury treatment and linkage with appropriate community resources
• Coordinating services for children with complex • Encouraging community activism through knowledge
medical needs and use of common resources and involvement with
school boards, religious groups, school athletic
• Structuring the practice consistent with the principles programs, and community facilities
of the medical home
• Care of adolescents and young adults, with the twin
• Collaborating with families to support the achievement goals of providing guidance and anticipating prob-
of educational goals from infancy through adolescence lems in areas such as sexuality, sexually transmitted
• Becoming an expert on violence prevention and abuse infection avoidance, drug and alcohol abuse and
avoidance teenage pregnancy prevention, and education and
• Providing advice and support during divorce, marital career goals advice
crises, or a loss of a family member • Supporting families to ensure that all children become
• Counseling families on lifestyle goals, such as the need flourishing adults
for family time and for an understanding of work-
related time constraints and stresses and how the
family copes with them

made in telephone conversations with parents, which are not trained as pediatricians. Pediatric societies
account for 25% of all referrals. For 75% of referrals, have championed the notion that the specialty care of
pediatricians anticipate sharing care with, not dele- children and adolescents should be provided by pedi-
gating care entirely to, the specialist; unfortunately, atric-trained medical and surgical specialists. For ex-
this practice is not often achieved, although delivery ample, the Surgical Advisory Panel of the AAP in 2002
systems are finding ways to promote comanagement asserted that all children 5 years or younger who re-
using an information technology platform or by locat- quire surgical care should be referred to a pediatric
ing generalists in specialty offices to evaluate and surgeon.
manage lower-acuity referrals.
The 15 most common health problems that general OUTCOMES OF CARE
pediatricians refer to specialists and the types of spe- The purpose of health care is not merely to build de-
cialists referred to for each problem are shown in livery systems or produce medical services. A society
Table 1-3. Most referrals are not for chronic diseases establishes a child health care system to improve chil-
or for children with special health care needs but dren’s health and well-being. Thus, the most impor-
rather are made for time-limited musculoskeletal, skin, tant measures of pediatric health care effectiveness
eye, or ear, nose, and throat problems. An important are related to the effect of services on child health and
caveat is the large share of referrals for psychosocial well-being. The claim that children are healthy is a
and developmental problems, which, if combined, myth that originates in the anachronistic notion of
would be the most common reason for referral. Many children as little adults. Pediatrics is clearly different
specialties have overlapping scopes of practice, which from adult medicine, as articulated by the 4 unique
is reflected in Table 1-3; for example, pediatricians characteristics of childhood: developmental change;
send patients with hernias and hydroceles to both dependency on parents and other adults for receiving
general surgeons and urologists. Why one type of health care; differential epidemiology of health, ill-
specialist is selected rather than another is related to a ness and disability; and demographic patterns that
pediatrician’s personal preference and the relation- include high rates of poverty and single-parent fami-
ships the primary care physician may have with spe- lies. Focusing on the word healthy in this context, if
cialist colleagues. children are considered little adults, then their lower
Among young children, an equal proportion of vis- disease burden is certainly an indicator of better
its are made to pediatric subspecialists and non– health. Only 10% of children have one of the long-
pediatric-trained specialists. By adolescence, however, term disorders—diabetes, cardiovascular disease, or
a greater share of visits occurs with specialists who asthma—that are typically included in disease-specific
12 PART 1: DELIVERING PEDIATRIC HEALTH CARE

Table 1-3 The 15 Most Common Health Problems General Pediatricians Refer
to Specialists and Nonphysician Clinicians With Specialized Skills

PERCENTAGE OF ALL MOST COMMON TYPES


HEALTH PROBLEM REFERRALS MADE BY OF SPECIALISTS REFERRED
REFERRED GENERAL PEDIATRICIANS TO (PERCENTAGE OF TOTAL)
Otitis media 9.2 Otolaryngologist (95.3)
Audiologist (3.5)
Refractive errors 5.6 Ophthalmologist (67.3)
Optometrist (32.7)
Musculoskeletal signs and symptoms 5.0 Orthopedic surgeon (71.0)
Physical therapist (11.8)
Benign skin lesions 4.5 Dermatologist (80.7)
Plastic surgeon (10.8)
Behavioral problems 3.5 Psychologist (58.5)
Psychiatrist (18.5)
Fractures (excluding hips and digits) 2.9 Orthopedic surgeon (92.5)
Otolaryngologist (7.5)
Joint disorders, trauma related 2.7 Orthopedic surgeon (87.8)
Physical therapist (12.2)
Developmental delay 2.6 Neurologist (20.8)
Orthopedic surgeon (12.5)
Hearing loss 2.5 Audiologist (71.3)
Otolaryngologist (28.3)
Strabismus, amblyopia 2.5 Ophthalmologist (97.8)
Optometrist (2.2)
Viral warts and molluscum contagiosum 2.5 Dermatologist (87.0)
Podiatrist (8.7)
External abdominal hernia and hydrocele 2.3 Pediatric or general surgeon (90.7)
Urologist (9.3)
Depression and anxiety 2.3 Psychiatrist (52.4)
Psychologist (40.4)
Allergies 2.1 Allergist (89.5)
Ophthalmologist (5.3)
Chronic pharyngitis and tonsillitis 2.0 Otolaryngologist (94.6)

studies. Likewise, no more than 20% of children have well-being, symptom burden, risk behaviors, or psy-
a chronic physical, developmental, behavioral, or chosocial resilience. The time dimension of health sug-
emotional condition that requires health and related gests the need to focus attention on risks—health
services of a type or amount beyond that required by states and behaviors that are precursors to future
children generally. Less than half of these have condi- morbidity, injury, and illness—as well as health pro-
tions that affect a child’s activities of daily living. The motive factors. Although the consequences of risks
low prevalence of medical disorders calls into ques- may not manifest until adulthood, antecedents to risk
tion the appropriateness for children of the conven- behaviors and states are molded during childhood,
tional disease-oriented model of health. Certainly, a and many risk behaviors make their debut in adoles-
focus on children with chronic conditions merits cence. The weight-activity-nutrition complex illus-
continued attention. However, if improvement in the trates this life course perspective. In childhood, the
health and well-being of all children is the goal, then antecedents to obesity—eating and activity behav-
pediatrics must maintain an expanded conceptualiza- iors—are formed. By late middle childhood and early
tion of child outcomes. adolescence, approximately 1 in 6 individuals is over-
The developmental trajectories of childhood, which weight, with a heightened risk for future disease. For
result from dynamic person-environment interactions, most individuals, the consequences of obesity—diabe-
and the importance of the family to child outcomes are tes, asthma, low back pain, hypertension, and heart
additional reasons that a child-specific outcomes disease—do not become a problem until adulthood,
framework is needed. Perspectives of health that in- although they occasionally appear in adolescence and
corporate a time dimension and the need to consider even in childhood.
factors that threaten or promote future health are now Promoting child health has intrinsic merit and has
encomposed in accepted definitions of health. Using benefits for adulthood. Viewing health across the life
this comprehensive concept of health, more than 50% span has been called the life course model of health.
of children have a significant need in terms of their The model suggests that health is produced across the
CHAPTER 1 • Health Care Delivery System 13

life span, but childhood is a critical period. Unique Survival


person–environment interactions exist at each stage The significant declines in mortality during the past
of development, some of which can have profound ef- century can be attributed more to improvements in
fects on future health. In addition, health care delivery public health than to specific technological advances
must be considered in the framework of broader soci- applied to individual patients. The discovery of antibi-
etal needs, such as improving the health of the whole otics was the most important scientific advance
population, enhancing patient experiences, and re- applied to individual patients that has had an impact
ducing (or at least controlling) per capita costs of on improving life span. The marked improvement in
care—aims the Institute for Healthcare Improvement life expectancy over the last century has resulted pri-
calls the Triple Aim. marily from lowered infant mortality. Infant mortality
In summary, a framework for assessing the effects of began to decline long before specific medical inter-
health delivery systems on child outcomes must be spe- ventions were imposed, and the decline resulted from
cific to the unique needs and experiences of children, general improvements in sanitation, maternal nutri-
be developmentally sensitive, incorporate a time di- tion, hygiene, and infant feeding. Immunizations are
mension, and be rooted in a life course model of health an important, although not singular, determinant of
production. Table 1-4 provides such a framework, this decline. After infancy, deaths in childhood are so
showing the key child outcome concepts and examples relatively infrequent that they are an insensitive indi-
of specific metrics. Each of the 8 child outcome do- cator of the value of medical interventions. Some re-
mains from Table 1-4 is discussed here, with special searchers have argued that disease-specific mortality
emphasis given to linkages with medical services. statistics, such as 5-year cancer survival, are the most

Table 1-4 Child Outcomes Framework for Assessing the Effects of Health Care
Delivery Systems, Organized by 8 Domains

OUTCOME MEASURES (EXAMPLES)


SURVIVAL • Infant mortality
• Life expectancy
• Five-year survival rates for specific diseases, such as cancer
• Cause-specific mortality rate, such as mortality caused by asthma
INJURY AND DISEASE
Injury • Unintentional injuries
• Intentional injuries
• Child abuse and neglect rates
• Suicide rates among youth
Development of disease • Vaccine-preventable infections, such as measles, hepatitis B, pertussis
• New cases of specific disorders, such as asthma, depression, attention deficit
disorder, type 2 diabetes, seizure disorder, allergies, acne, metabolic
syndrome, anxiety
Disease complications • Severe dehydration
• Suicide associated with depression
• Iatrogenic complications associated with surgical interventions
• Iatrogenic complications associated with medications
• Consequences of untreated or inadequately treated infections, such as post-
streptococcal glomerulonephritis, Lyme arthritis, pelvic inflammatory disease
• School days lost resulting from illness
Disease severity • Among patients with diabetes, glycated hemoglobin level
• Among patients with asthma, forced expiratory volume in 1 second
• Among children with hypertension, systolic and diastolic blood pressure levels
• Cancer stage at diagnosis
GROWTH • Birth weight
• Underweight and failure to thrive
• Overweight and obesity
FUNCTIONING AND DEVELOPMENT
Mobility • Attainment of age-appropriate mobility developmental milestones (eg, age
child walked)
• Days of restricted activity
• Amount and frequency of physical activity

Continued
14 PART 1: DELIVERING PEDIATRIC HEALTH CARE

Table 1-4 Child Outcomes Framework for Assessing the Effects of Health Care
Delivery Systems, Organized by 8 Domains—cont’d

OUTCOME MEASURES (EXAMPLES)


Self-management • Attainment of age-appropriate self-care developmental milestones
(eg, getting dressed independently)
• Sleep habits
• Nutritional intake behaviors
• Dental hygiene
• Adherence to medication regimens
Communication • Attainment of age-specific receptive language capacities
• Attainment of age-specific expressive language capacities
Interpersonal interactions • Developing satisfying and fulfilling friendships
• For youth and young adults, developing intimate relationships
Intellectual performance • School readiness
• Academic performance, such as grades and grade completion
• Graduation from secondary school
FAMILY
Family impact • Parental work days lost resulting from a child’s illness
• Parental worry about child’s health
Family connectedness • Parental time spent with children in activities such as play, recreation, meals
• Quality and frequency of child–parent discussions about the child’s life
• Parental monitoring of children’s activities within and outside the home
• Parental monitoring of children’s use of the media (TV, Internet, social
networking)
RISKS
Risk behaviors • Tobacco smoking
• Alcohol use
• Drug use
• Early sexual debut; unsafe sex practices
• Not wearing a seat belt while riding in a motor vehicle
• Not using a helmet while riding a bicycle
SYMPTOMS AND COMFORT
Symptoms • Physically experienced sensations, feelings, and perceptions that are the result
of a disease process
• Emotionally experienced sensations, feelings, and perceptions that are the
result of a disease process
Comfort • Physically experienced body sensations, feelings, and perceptions that are not
associated with a known disease process
• Emotionally experienced body sensations, feelings, and perceptions that are
not associated with a known disease process
WELL-BEING • Happiness
• Self-worth
• Life satisfaction
• Meaning and purpose

compelling mortality statistics to use to assess system recognizing the existence of behavior problems and
effectiveness because they are directly related to the social factors related to illness than they are at recog-
adequacy of treatment. nizing problems that have obvious biophysiologic or
anatomic manifestations, even though these factors
Disease and Injury Prevention have profound influences on health and well-being.
Even though pediatricians may not be able to prevent However, even organic problems may be neglected.
the occurrence of most disorders, they should be ex- Problem recognition also extends to prevention of
pert at recognizing these problems when they occur. disease.
The application of diagnostic or therapeutic strategies One type of prevention, primary prevention, is tra-
requires first that problems, or potential problems, be ditional to pediatricians. It consists of recognizing
recognized. Evidence indicates that the existence of susceptibility to disease and applying interventions
many types of health problems is often overlooked. to prevent disease from occurring. Although immu-
For example, physicians are consistently poorer at nizations are the most obvious example of primary
CHAPTER 1 • Health Care Delivery System 15

prevention, prevention goes far beyond this mea- interactions, and intellectual capacity rapidly change,
sure. In some instances, only certain people are at and acquisition of new abilities characterizes stages of
risk for acquiring disease later in life; pediatricians development; they are also targets of health services.
must direct efforts at discovering who these people Monitoring age-appropriate development of new ca-
are, keeping them under surveillance, and trying to pacities and intervening with children who have prob-
eliminate the situations that allow the illness to de- lems in each dimension are a fundamental part of
velop. This approach is known as secondary preven- well-child care. Increasing attention to early brain and
tion, which is aimed at identifying disease in early child development, as well as reducing toxic stress, in
stages before it causes significant morbidity. Sec- the first 3 years of life holds great promise for reduc-
ondary prevention occurs at the physician–patient ing learning and behavior problems in school-aged
level, as well as through the initiatives of govern- children and adolescents.
ment and social agencies. Examples of such efforts Reducing the number of days of restricted activity,
include hearing and vision screening in schools, for example, because of acute illness or asthma is often
screening programs for specific disease in special a primary treatment outcome. When asked about the
populations (eg, sickle cell anemia), and state- meaning of being healthy, children and youth talk
mandated neonatal screening for inherited metabolic about “being able to do what I want to do, play what I
disorders (eg, phenylketonuria). Newer prevention want to play, or see my friends.” Similarly, children
challenges for pediatricians concern recognizing know that healthful self-management habits are an
and dealing with occupational hazards that result in important part of their health status, and counseling
parents unknowingly exposing their children to toxic on these topics is part of virtually every routine health
materials invisibly carried home from the workplace. visit. One of the new morbidities with which pediatri-
As social, occupational, environmental, and behavioral cians have become more concerned is learning and
factors become recognized as important antecedents intellectual development. For young children, pediatri-
of many chronic illnesses, pediatricians will become cians counsel parents about the importance of reading
more involved in activities directed toward preventing to brain development, enjoyment, and being prepared
them. to learn once the child starts school. Programs such as
Much of health care is devoted to minimizing the Reach Out and Read (www.reachoutandread.org) have
effect of diseases on health, which is tertiary preven- been developed to provide office-based physicians
tion. Reducing the impact of injury by limiting the with tools for promoting early childhood literacy.
duration of disability is an outcome that health care As children get older, pediatricians work with them
delivery systems can affect, although the provision of and their families in setting educational goals, moni-
health services is not the only determinant of func- toring children’s performance in school, and, with
tional recovery. Similarly, health care attempts to pre- youth, setting goals for their young adult professional
vent or mitigate the effects of disease complications lives. Perhaps the single best indicator of the health
and to stabilize the disease itself so as to reduce its of a population of children and youth is the rate of
severity. Because managing the complexity, stability, graduation from secondary school. Healthy children
and complications of disease is a common and effec- finish high school and successfully transition into
tive part of pediatric practice, indicators of the ade- adulthood.
quacy of disease control are obvious candidates for
outcomes for which the health care delivery system Family
should be accountable. Children’s health outcomes are inextricably bound
with their family. The family and home life are the
Growth most important contexts in the production of chil-
Monitoring children’s growth is one of the corner- dren’s health and for promoting their development.
stones of pediatric primary care. Assessing growth Parenting and family involvement in a child’s life
requires pediatricians to examine both tails of the dis- are especially critical. A variety of studies have
tribution, underweight and overweight, and linear shown that accumulated childhood exposures to
growth. The ability of pediatricians to identify growth different types of abuse or household dysfunction
problems is well established. Whether pediatric pro- directly increase the risk for psychiatric disorder
fessionals have an important effect on preventing and several chronic diseases that emerge later in
growth problems is less clear. Today, approximately life. Abuse appears to alter the structures and func-
17% of children are obese. Interventions that pediatri- tions of a child’s brain and the body’s reactivity to
cians can apply to prevent the problem of obesity are stress. Unstable (especially rejecting) parent–child
lacking. Problems with inadequate weight are more relationships produce biological changes that inter-
easily addressed by health care; however, the degree act with future environmental stimuli to produce
to which a health care delivery system can affect the adult disease.
healthy growth of an entire population remains to be Child health can affect the family by influencing
demonstrated. (See Chapter 298, Obesity and Meta- parental emotions and mood (eg, excessive worry
bolic Syndrome.) about a sick child, a depressed mood in a parent who
devotes a large share of time to the care of a child with
Functioning and Development a special health care need) and parents’ work produc-
Children’s functional capacities in the areas of self- tivity. These family outcomes can then affect children’s
management, mobility, communication, interpersonal health in a reciprocal dynamic relationship.
16 PART 1: DELIVERING PEDIATRIC HEALTH CARE

Risks be dangerous is well known. For example, several


When a child or youth engages in high-risk behavior, studies demonstrate that surgical rates in the United
the chances of future injury or disease are increased. States are much higher than those in other developed
Not wearing a helmet while riding a bike enhances the countries, without any demonstrable difference in
likelihood that if the child is in a bike accident, a head the need for surgery as defined by prevalence of dis-
injury will occur. Tobacco smoking in adolescence ease or illness. Even within the United States, the
negatively affects pulmonary function and begins a number of hospital admissions, the length of stay in
cascade of negative effects on future cardiovascular the hospital, and the rate of surgical procedures vary
and pulmonary structure and function. Early sexual markedly from area to area, unrelated to differences
debut heightens the chances for acquiring sexually in medical need—although socioeconomic circum-
transmitted infections and teen pregnancy. Inappro- stances may be a component of this variation. This
priate exposures to smoking, sex, and violence in the potential overuse of specialized services might actu-
media, on the Internet, and via social networking all ally result in poorer outcomes, with more patients
increase the likelihood of risky behavior in adolescents. than necessary experiencing iatrogenic complica-
Routine health visits for adolescents should always tions of interventions. Another problem is the misuse
address risk avoidance. Significant effects of these in- of drug therapy. Outcomes data will be helpful in
terventions, primarily information giving and counsel- determining the usefulness of various therapeutic
ing, on the incidence and frequency of risk behaviors maneuvers and will guide the appropriate use of
have not been shown in research studies. This type of drugs. In a related way, prescribing medications or
evidence is needed to guide risk avoidance interven- home-based management strategies that are not ad-
tions better. Until these data are made available, most hered to by patients or families is an important chal-
professionals would not want to be held accountable lenge to the ongoing care of illness. Nonadherence is
for the levels of risk behavior in the population for costly and can result in unnecessary escalation of
whom they care. therapy or hospitalization for exacerbation that could
have been prevented (eg, asthma). As the demand to
Symptoms and Comfort connect outcomes to process grows, the likely sce-
Feelings of discomfort can be experienced physically nario is that physicians will be encouraged, and per-
and emotionally, and they may or may not be linked to haps even required, to keep certain types of data
a disease. Almost one-half of all office-based visits about children in their practices. A data set for hos-
involve some degree of symptom management. Chil- pitals to use for each patient admitted and a similar
dren who feel uncomfortable are less involved in set for ambulatory care have been accepted by the
desired activities, more likely to miss school, and more National Center for Health Statistics and recom-
unhappy than others without the same feelings. Re- mended for wide use. This information includes reg-
lieving the suffering associated with illness is a core istration data (patient identification number, name,
function of health services delivery. Thus the level of address, birth date, gender, race, and marital status)
comfort of a patient population or the symptom bur- and encounter data (facility identification number,
den of a diseased subgroup is a clear outcome indica- provider identification number, patient identification
tor that can be linked to health services. number, source of payment, date of encounter,
patient’s purpose for visit, physician’s diagnosis, di-
Well-Being agnostic and management procedures, and disposi-
Well-being has 2 components. The first component, tion). Adoption of this or a similar system for
simply stated, is happiness—the degree to which life collecting and standardizing information will facili-
experiences match the individual’s expectations. tate the understanding of health and disease pro-
Health care delivery systems add to the happiness of cesses and the role medical care plays in influencing
children by ensuring that the risk of injury and disease them. (For more details, see Chapter 5, Quality Im-
is as low as possible and the impact of disorders when provement in Practice.)
injury or disease occurs is minimized by preventing To ensure that diagnostic procedures and instituted
unwanted symptoms and ensuring the highest level of therapy are adequate and that problems are being re-
comfort possible, by promoting growth and develop- solved as expected, patients must be monitored; this
ment, by counseling on behavior (both ways to im- approach is known as outcomes assessment. Medical
prove health directly and ways to avoid harm), and by textbooks and teaching rarely include information
supporting families in the care of their children. that helps the physician define appropriate intervals
The second component is meaning, predictability, for reassessing particular health problems. Such in-
and flourishing. Healthy children see and plan for formation has to come from careful studies of the
their future. Children who have led healthy lives are natural history of patients’ problems, with and with-
more likely to become flourishing adults. out intervention, and such studies are rare. Moreover,
little is known about the extent to which physicians
Outcomes and Health Services follow up with problems they treat. When the issue
Some outcomes Table 1-4 are more amenable to has been examined, research shows that failure to fol-
health care services than others. The knowledge base low up on treated patients results in unresolved health
linking services to outcomes is largest for the bio- problems; at the very least, it produces a highly inef-
logical outcomes of survival, disease, and growth. ficient health care system: Care is paid for, but no
The fact that many commonly applied therapeutic benefit is gained. At the most, outcomes assessment
maneuvers are of unproved usefulness and may even will ultimately lead to societal demands for greater
CHAPTER 2 • Practice Organization 17

accountability of the profession. Fortunately, careful 2013;132(2):390–397 (pediatrics.aappublications.org/


review and analysis of publications on the diagnosis content/132/2/390)
and treatment of illness has led to the development of American Academy of Pediatrics Committee on Pediatric
evidence-based guidelines, which, when used, are ex- Workforce. Scope of practice issues in the delivery of
pediatric healthcare. Pediatrics. 2003;111(2):426–435.
pected to improve health outcomes. Yet, no consensus
Reaffirmed January 2006 (pediatrics.aappublications.org/
exists on the specific outcome metrics by which the content/111/2/426)
effectiveness of health care delivery systems should Goodman DC; American Academy of Pediatrics Committee
be evaluated. For which outcomes should health care on Pediatric Workforce. The pediatrician workforce:
delivery systems be held fully accountable, partially current status and future prospects. Pediatrics.
accountable, or not at all accountable? This question 2005;116(1):e156–e173 (pediatrics.aappublications.org/
remains largely unanswered, which severely limits the content/116/1/e156)
profession’s ability to use outcomes assessment to
improve health care services. Future health care deliv- SUGGESTED READINGS
ery systems for children must become more outcomes
Berwick DM, Nolan TW, Whittington J. The triple aim:
oriented. Deciding on which outcomes to base these
care, health, and cost. Health Aff (Millwood). 2008;27:
new delivery systems is an urgent task facing all child 759–769
health care professionals and managers. Forrest CB, Simpson L, Clancy C. Child health services
research: challenges and opportunities. JAMA.
1997;277:1787–1793
TOOLS FOR PRACTICE
Freed GL, Dunham KM, Gebremariam A, Wheeler JR, et al.
Community Advocacy and Coordination Which pediatricians are providing care to America’s
• The AAP Child Health Mapping Project (interactive children? An update on the trends and changes during
tool), American Academy of Pediatrics and Dart- the past 26 years. J Pediatr. 2010;157:148–152
mouth Medical School, Center for Evaluative Clinical Simpson L, Owens PL, Zodet MW, et al. Health care for
Sciences (www.aap.org/mapping) children and youth in the United States: annual report
on patterns of coverage, utilization, quality, and
Engaging Patient and Family expenditures by income. Ambul Pediatr. 2005;5:6–44
• Pediatric Specialists (Web page), American Academy
of Pediatrics (www.healthychildren.org/English/
family-life/health-management/pediatric-specialists/
Pages/default.aspx) Chapter 2
Practice Management and Care Coordination PRACTICE ORGANIZATION
• Addressing Mental Health Concerns in Primary
Care: A Clinician’s Toolkit (CD-ROM), American
Academy of Pediatrics (shop.aap.org) Thomas K. McInerny, MD
• American Telemedicine Association (Web site),
(www.americantelemed.org/home)
• Pediatric Call Centers and the Practice of Telephone The organization of the practice is critical for the
Triage and Advice: Critical Success Factors (report), primary care physician’s success in providing high-
American Academy of Pediatrics (www.aap.org/ quality care within a medical home and implementing
sections/telecare/11_98.pdf) and maintaining sound business principles. A study
• Pediatric Telehealth Care (Web page), American of 44 private pediatric and family medicine practices
Academy of Pediatrics (www2.aap.org/sections/ in North Carolina shows that low levels of preventive
telecare/default.cfm) service performance and a significant percentage of
• Pediatric Telephone Protocols, 14th ed (book), Amer- bankruptcies were largely a result of poor organiza-
ican Academy of Pediatrics, Schmitt BD (shop.aap. tional characteristics. A well-organized practice can
org) meet the demands of patients, families, and payers for
• Practice Transformation (Web page), American Acad- high-quality, cost-effective care by developing posi-
emy of Pediatrics (www.aap.org/en-us/professional- tive attributes in 4 major areas: (1) culture, (2) recruit-
resources/practice-support/Pages/Practice-Support. ment and retention, (3) defining and achieving goals,
aspx) and (4) planning.

CULTURE OF A PRACTICE
AAP POLICY The culture of a practice is the subjective feeling of the
American Academy of Pediatrics and the Medical Home physicians, staff, and patients and their families about
Initiatives for Children With Special Needs Project what it is like to work in and visit the practice. Is the
Advisory Committee. The medical home. Pediatrics. atmosphere pleasant, friendly, caring, and support-
2002;110(1):184–186. Reaffirmed May 2008 (pediatrics.
ive? Is it just the opposite? Or is it somewhere in
aappublications.org/content/110/1/184)
American Academy of Pediatrics Committee on Pediatric
between? The culture of the practice is set by the phy-
Workforce. Enhancing the racial and ethnic diversity of sicians, the natural leaders of the practice. Their atti-
the pediatric workforce. Pediatrics. 2000;105(1):129–131 tudes and beliefs are often mirrored by the practice
(pediatrics.aappublications.org/content/105/1/129) staff. Projecting a positive image is the responsibility
American Academy of Pediatrics Committee on Pediatric of all staff, including nurses, receptionists, and admin-
Workforce. Pediatrician workforce statement. Pediatrics. istrators, but the physicians set the tone for providing
18 PART 1: DELIVERING PEDIATRIC HEALTH CARE

compassionate, family-centered care. First and fore- contribute their ideas for practice improvement,
most, physicians in well-organized practices believe whether through a suggestion box, family advisory
that caring for children and working with their group, or other venue. Ultimately, the practice needs
parents/guardians to achieve the best possible health an identified individual physician or group who is em-
outcomes for their children is a special privilege. Ac- powered to make final decisions in the best interest of
knowledging and respecting the patient’s and family’s its patients, families, employees, and fiscal viability.
individual beliefs and customs are essential in provid- The pediatrician managing partner has the ultimate
ing comprehensive, culturally effective care. Pre-visit responsibility for making decisions about the conduct
and follow-up patient communication and compre- of the practice. Often, she or he may be assisted by a
hensive office visits are seen as welcome opportunities planning or executive committee of physicians, nurses,
to achieve these goals. Admittedly, sometimes on staff, and parents.
particularly busy days, maintaining this positive atti- A mission statement that reflects the individual val-
tude can be difficult, but doing so is most important, ues of the care team can be a useful tool to clearly
lest a negative attitude be projected toward patients define priorities of the practice and establish a positive
and parents by the physicians or staff. Increasingly, culture within the family-centered medical home.
physicians recognize that patient- and family-centered
care leads to optimal care and patient, family, physi- RECRUITMENT AND RETENTION
cian, and staff satisfaction. By forming true partner- Recruitment of high-quality physicians, nurses, and
ships with patients and families and practicing shared medical assistants, nonclinical staff, and administra-
decision making between families and physicians and tors into the pediatric practice is an important goal for
the care team, pediatricians develop a better under- a well-organized practice. However, recruitment is
standing of the patient’s/family’s goals and increase only one half of the equation, with retention of valued
the likelihood of a mutually agreed-upon management employees forming the other half. Given that orienta-
plan and better compliance with that plan. tion of new staff members to their functions within the
Mutual respect is a fundamental characteristic of a practice can be disruptive, time-consuming, and ex-
well-organized practice. All members of the practice pensive, high turnover rates are to be avoided. Fur-
must treat each other with courtesy and dignity at all thermore, patients and families greatly appreciate
times, avoiding negative remarks or comments. If some- hearing a familiar voice or seeing a familiar face in
one in the practice shows a need for improvement, then their interactions with the practice. Additionally, long-
this need should be discussed with the individual pri- term staff members gain an understanding of patient
vately in a positive fashion. Creating a respectful atmo- and family characteristics that can be particularly
sphere in the practice is highly beneficial for staff helpful in providing care for those patients and fami-
performance and families’ perception of the practice. lies. Finally, physicians and staff develop efficient pat-
Teamwork provides the basis for a high-functioning terns of interaction with each other over time, and
medical home. Delivering high-quality care is a com- regular staff meetings where opinions are addressed
plex process requiring the coordinated efforts of and valued greatly improve the overall functioning of
physicians, nurses, receptionists, and administrative the practice. Thus taking the appropriate measures
personnel. All activities must be coordinated to necessary to retain a high-quality staff is in the pedia-
develop a well-functioning team with clearly defined trician’s best interests.
roles and responsibilities and a seamless system of Developing positions of responsibility within the
transition among the staff. This is particularly impor- care team can be beneficial in providing a high-quality
tant when patients are transferred from one physician medical home. It is important to establish a designated
to another at the end of a session or day. One way of care coordinator whose role goes beyond coordinat-
ensuring that all the pertinent information about the ing a patient’s medical care, and includes engaging
patient is appropriately communicated is to use the other resources in the community to support the
acronym DATAS: growth and development of the child. Assigning tasks
Descriptive identification of the patient and responsibilities to other staff members such as
Active patient issues asthma coordinator, newborn-screening coordinator,
To do—follow-up issues and lab coordinator, as well as bringing in ancillary
Anticipate potential problems and interventions staff such as nutritionists, psychologists, therapists,
Special instructions and lactation consultants, helps to round out the
Finally, notably, a well-organized practice functions comprehensive-care team. Designating clear roles and
in a democratic fashion rather than an authoritarian responsibilities to members of the care team acknowl-
one. It is important to define practice governance so edges their importance and improves efficiency, satis-
each individual knows to whom they directly report faction, and clinical outcomes.
and who should hear their ideas or concerns. Deci- Continuing education is a critical component to
sions regarding practice policies, goals, and activities staff retention and satisfaction and can be incorpo-
are reached by a thorough discussion with all mem- rated into practice routines. Clinical education can be
bers of the practice, hopefully leading to consensus so done while in the process of care or in more didactic
that all staff members are invested in the decisions sessions. A “lunch and learn” program encourages
that are made. This process requires physicians and staff collegiality and increases their knowledge base.
staff to listen respectfully and with an open mind to Competitive salaries and benefits (health, life, and
everyone’s opinions and to encourage frank discus- disability insurance and retirement plans) are essential
sion regarding potential solutions to problems and to recruiting and retaining high-quality physicians and
challenges. Patients and families should also be able to employees. Appropriate salaries and benefits should
CHAPTER 2 • Practice Organization 19

be regarded as investments in high-performing indi- satisfaction and work toward improving staff mem-
viduals that will provide a substantial return on invest- bers’ performance in this area that will become in-
ment to the practice. creasingly important as patients and families have
Financial rewards are obviously effective, but other more incentive to seek out high-quality care with
techniques can be quite helpful as well. For example, newer health insurance products. Thus listening to
frequent (daily) praise and appreciation provides em- and acting on patient concerns and complaints, and
ployees with a sense of well-being and value. In addi- surveying patients regularly to assess their satisfac-
tion, letting the staff know the outcomes of patients of tion, are important activities. In addition, the practice
concern with whom they have interacted will give should solicit patient and family feedback periodically
them a sense of true investment in the care of the in the form of patient surveys or a family advisory
patient. Other methods of rewarding staff include oc- council. Such a council can consist of patients and
casional gifts to thank them for exemplary service parents who meet regularly (eg, 4 to 6 times per year)
during particularly stressful times. Finally, including with physicians, nurses, and staff members to discuss
all staff members in celebrations of such events as the ways to improve services for patients and families.
achievment of major practice goals, the arrival of any The one constant in life is change. Defining and en-
new physician or staff member, 25th anniversaries, gaging in a continuous quality improvement process
holiday parties, or retirements will let staff members is essential in allowing a practice to meet the ever
know their value in the practice. changing needs of its patients and families.
Given that the primary care practice of pediatrics is
a business, sound business principles are required for
DEFINING AND ACHIEVING GOALS practices to perform well financially. Because provid-
The 2 major goals of a well-organized practice are pro- ing direct patient care is the primary revenue stream
viding high-quality care for its patients and families for most practices, the physicians themselves must
and implementing and maintaining sound business maximize their time in clinical care; business manage-
principles for financial success. Providing high-quality ment may be better handled by specifically trained
care requires more than well-trained physicians and employees. Practice policy development, adherence to
staff. The practice needs to develop systems of care legal regulations of governing bodies (OSHA, HIPAA,
and daily work-flow processes designed to achieve the CLIA), and contract negotiations with insurers are
best practice results. Both the Institute of Medicine and critical areas where physicians should seek the advice
the Institute for Healthcare Improvement have called or help of high-quality professional consultants. Prac-
for the implementation of appropriate systems of care tice clinical policy manuals, telephone advice instruc-
at all levels in the medical-care spectrum. The systems- tions, and employee manuals should be used regularly
of-care principles are taken from those developed by and updated frequently. Experts in medical legal mat-
the manufacturing industry and have been demon- ters should be employed to assist with contracts
strated to reduce variation and improve product qual- and negotiation and to provide suggestions to reduce
ity. Many of these principles are applicable to medical the risk of medical malpractice suits. Accountants
practice and have been shown to improve outcomes with specific knowledge of medical economics should
significantly. One of the most important systems-of- review the practice’s financial accounts regularly and
care principles is measurement. Randolph and his provide advice to improve financial performance.
colleagues show that some practices that measured Similarly, management consultants with experience in
immunization rates found that these rates were signifi- medical-practice management should be consulted for
cantly lower than the physicians’ estimates. The com- advice in the structure of the practice. For practices of
mon business saying, “you can’t manage what you 3 to 5 physicians, an office manager with expertise in
don’t measure” is applicable to pediatric practices. the business aspects of running a medical practice
Pediatric practices should institute a host of measure- should be employed. In many cases, someone with a
ment processes such as immunization registries, master’s degree in business administration will be
appointments-kept ratios, waiting time for appoint- more effective than someone with less training. For
ments, and time taken to answer telephone calls, practices of 6 or more physicians, a well-qualified and
among other processes. See Chapter 5, Quality Im- experienced practice administrator should be hired to
provement in Pediatric Primary Care, for detailed in- oversee the complex operations of large practices.
formation on small cycles of improvement necessary Although well-trained individuals may be expensive,
for quality improvement. they will usually return their salary many times over
Dedication to practicing evidence-based medicine and should therefore be considered as an investment
for patients promotes safety and ensures a practice’s rather than an expense. In addition to an office man-
committment to lifelong learning and continuous ager, one or more of the physicians in the practice
quality improvement. As part of this process, physi- need to serve as managing partners, often overseeing
cians need to be aware of the latest guidelines for care a particular aspect of practice management such as
as published by the American Academy of Pediatrics personnel, financial performance, or quality improve-
(AAP) and other organizations and to work to institute ment. Practices also should benchmark their perfor-
these guidelines as a regular part of their practice. mance financially by comparing their revenues and
Essential to the quality improvement process are regular expenses to the performances of the best practices
meetings of the physicians and staff to determine best of similar size. Finally, attention to detail is absolutely
how to put in place systems of care necessary to en- required to ensure that the services provided are appro-
sure high-quality outcomes. Finally, a well-organized priately coded and billed for, all charges are captured,
pediatric practice must assess patient and family and collections are tracked carefully and maximized.
20 PART 1: DELIVERING PEDIATRIC HEALTH CARE

The AAP Section on Administration and Practice changes. The practice should formulate a strategic plan
Management (SOAPM) has used the services of the for the coming year and review the plan every quarter
Medical Group Management Association to survey pe- to determine progress toward the goals and objectives.
diatric practices and provides the results of these sur- Hiring a professional facilitator to assist in the retreat
veys on its Web site (www.aap.org/practicesupport). At activities may be worth the investment.
least one pediatrician in the practice, preferably the
managing partner, should be a member of SOAPM,
keep up with the SOAPM list serve, utilize Practice Sup-
CONCLUSION
port frequently, and review the work of the AAP Private Developing and maintaining a well-organized pediat-
Payer Advocacy Advisory Committee (PPAAC) recom- ric practice requires hard work, constant attention,
mendations to learn the latest developments in the and skills that are not usually taught in medical school
business of pediatrics and for helpful discussions on or residency. However, physicians must devote the
practice management. SOAPM, Practice Support, and time and effort and acquire the necessary skills if they
the PPAAC are valuable benefits of AAP membership. are to provide high-quality care in the context of the
The use of computers in the well-organized pediat- medical home model for patients and families and to
ric practice is increasingly essential. Computerized be successful financially. A practice must have a com-
billing systems have long been the norm for pediatric mittment to quality improvement and be open to trans-
practices, and their hardware and software systems formation in order to respond to the changing health
should be periodically upgraded to meet the demands care landscape and provide the highest-quality care to
imposed by an increasingly complex health-insurance patients and families. The AAP and other professional
system. Consultants are available either locally or na- societies offer courses in practice management. In ad-
tionally who can be of great assistance in purchasing dition, the AAP offers practice-management resources
the right computerized system for the practice. Be- and tools on its Web site (www.aap.org/practicesup-
yond this effort, computerized or electronic medical port). Running a successful practice can be challeng-
records (EMRs) are becoming essential to provide ing, but the rewards are well worth the effort.
high-quality care in the framework of a medical home
(see Chapter 3, Information Systems in Pediatric Prac- TOOLS FOR PRACTICE
tice). The benefits of electronic medical records in Community Coordination and Advocacy
providing reminder recall systems, improving immu- • A Checklist for Attitudes About Patients and Families
nization rates, and notifying patients and families of as Advisors (questionnaire), Institute for Patient- and
the recommended frequency of health assessment Family-centered Care (www.ipfcc.org/advance/Checklist_
visits to care for children with chronic illnesses, to for_Attitudes.pdf)
alert physicians regarding patients’ allergic reactions • Creating Patient and Family Advisory Councils (book-
to drugs, and to prevent drug–drug interactions have let), Institute for Patient- and Family-centered Care
been well documented. Although these systems are (www.ipfcc.org/advance/Advisory_Councils.pdf)
quite expensive in terms of actual cost and the ex- • Culturally Effective Care Toolkit: What Is Culturally
pense entailed in converting from paper records to Effective Pediatric Care? (Web page), American Acad-
EMRs, the benefits to patients and families and the emy of Pediatrics (www.aap.org/en-us/professional-
reduction in personnel expenses for filing and tran- resources/practice-support/Patient-Management/
scribing justify the investment. Of course, installing Pages/Culturally-Effective-Care-Toolkit.aspx)
an EMR system is essential to being able to provide • Healthy People 2020 Program Planning (Web page),
patients and their families with a personal health re- US Department of Health and Human Services (www.
cord (PHR). For the latest information regarding healthypeople.gov/2020/tools-and-resources/
EMRs, physicians should visit the AAP Council on Program-Planning)
Clinical Information Technology (COCIT) Web site
(www2.aap.org/informatics/COCIT.html). Medical Decision Support
• EQIPP (online program), American Academy of
PLANNING Pediatrics (eqipp.aap.org)
Another key element in determining the success of
a business is planning for the future. Thus a well- Practice Management and Care Coordination
organized practice will hold annual retreats to assess • Family Centered Care Self-Assessment Tool, Family
past progress, survey the local and national medical Voices (www.familyvoices.org/admin/work_family_
environmental trends, and develop a set of goals and centered/files/fcca_FamilyTool.pdf)
measurable objectives for the next year. Preparation • Measuring Medical Homes: Tools to Evaluate the
for this retreat should include a strengths, weak- Pediatric Patient- and Family-Centered Medical
nesses, opportunities, and threats (SWOT) analysis, Home (monograph), National Center for Medical
with particular attention paid to anticipated changes Home Implementation (medicalhomeinfo.aap.org/
in health care financing (eg, new payment models tools-resources/Documents/Monograph_FINAL_
or an increase in the number of patients moving to Sept2010.pdf)
consumer-driven health plans), emerging changes in • Patient- and Family-Centered Ambulatory Care: a
the structure of delivering primary care from pri- Checklist (fact sheet), Institute for Patient- and Family-
vately operated pediatric practices to multi-site orga- Centered Care (www.ipfcc.org/advance/topics/
nizations to larger integrated health systems and Ambulatory-Care-Key-Concepts.pdf)
accountable care organizations, birth rates, child health • Practice Transformation (Web page), American Acad-
disparities, population changes, and physician supply emy of Pediatrics (www.aap.org/practicesupport)
CHAPTER 3 • Information Systems in Pediatric Practice 21

SUGGESTED READINGS codified in federal regulations as the Meaningful Use


Hurtado MP, Swift EK, Corrigan JM. Crossing the Quality (MU) program and supported by patient perceptions
Chasm: A New Health System for the 21st Century. of care quality. Adoption has been rapid, at least for
Washington, DC: National Academy Press, Institute of basic EHR systems, but the barriers of complexity and
Medicine; 2001 cost mean that it will be many years before health care
Institute for Healthcare Improvement. Available at: www.ihi. is completely paperless. Fortunately, the EHR market
org. Accessed October 21, 2015 is responding to the need for systems that work for
Randolph G, Fried B, Loeding L, Margolis P, Lannon C. child health care, allowing pediatricians to adopt these
Organizational characteristics and preventive service systems, albeit at a slower pace. Only a minority of
delivery in private practices: a peek inside the “black
pediatric physicians use EHR systems that possess the
box” of private practices caring for children. Pediatrics.
2005;115(6):1704–1711
full range of functionality. Although MU incentive pay-
ments reduce the net cost of implementation, ques-
tions remain about how to select a system, manage the
change, and bear the total expense.
Chapter 3
DEFINITIONS
INFORMATION SYSTEMS IN Electronic Health Record Versus Electronic
PEDIATRIC PRACTICE Medical Record
The Institute of Medicine defines an EHR system:
S. Andrew Spooner, MD, MS
An EHR system includes (1) longitudinal collection of
electronic health information for and about persons,
where health information is defined as information per-
INTRODUCTION taining to the health of an individual or health care
provided to an individual; (2) immediate electronic ac-
Fundamental to a functional medical home for chil-
cess to person- and population-level information by
dren is an information system that supports a compre- authorized, and only authorized, users; (3) provision of
hensive, longitudinal record for each child and the knowledge and decision-support that enhance the qual-
ability to manage patient populations. The growing ity, safety, and efficiency of patient care; and (4) support
popularity of the Patient-Centered Medical Home of efficient processes for health care delivery. Critical
(PCMH) program from the National Council for Quality building blocks of an EHR system are the electronic
Assurance formalizes one definition of the medical health records (EHR) maintained by providers . . . and
home and outlines the information management ac- by individuals (also called personal health records).
tivities that a recognized practice should master. In this chapter, the term EHR refers to the system a
Although the PCMH program does not, strictly speak- physician would use in an ambulatory or inpatient set-
ing, require an electronic health record (EHR), many of ting to implement the primary and specialty care of
the activities specified in the program would be diffi- infants, children, and adolescents. There is an older
cult to perform on paper. Table 3-1 outlines the main term, electronic medical record (EMR), that is often
areas of functionality for the 2014 PCMH recognition also used to describe these systems. The US Office of
program, along with examples of EHR functions that the National Coordinator for Health Information Tech-
could help perform these activities efficiently. nology makes the distinction that an EHR contains
During the past decade, physician practices and information aggregated from all physicians involved
hospitals have spent an increasing amount of time and in a patient’s care—not just from the physician who
money on EHR systems. The rapid rise in the use of purchased the computer system. Although this may be
EHRs has been partly a response to the American pub- a useful distinction, the reality in the marketplace to-
lic’s long-standing call for better information manage- day is that all vendors who sell EMRs call them EHRs,
ment in health care, echoed by US presidents and so that term will be used in this chapter.

Table 3-1 Patient-Centered Medical Home Standard (2014) and Examples of


Supportive Electronic Health Record Functionality
Patient-centered access Provide online access to medical record information. Support secure
electronic messaging with patients.
Team-based care Calculate proportion of encounters held with patient’s personal physician.
Maintain a written transition plan from pediatric to adult care.
Population health management Record family history as structured data. Record social or cultural needs in
health assessment. Create lists of patients who need preventive care.
Care management and support Identify children and adolescents with special health care needs or high-cost
utilization. Identify patients based on social determinants of health.
Maintain individual care plans.
Care coordination and care transitions Record laboratory and radiology orders. Track overdue laboratory results.
Report on percentage of patients identified as needing care management.
Performance measurement and quality Report on 2 measures related to care coordination. Exchange data
improvement bidirectionally with a health information exchange.
22 PART 1: DELIVERING PEDIATRIC HEALTH CARE

Meaningful Use dose calculations in prescribing, and omission of pas-


The major driver of EHR design in the United States sive smoking (or other forms of tobacco exposure im-
since 2009 has been the MU incentive program, a part portant in pediatrics) in the tobacco history criterion.
of the Health Information Technology for Economic There are some other criteria that do meet some needs
and Clinical Health (HITECH) Act of the American in child health, but a system that adheres to all the cri-
Recovery and Reinvestment Act of 2009. HITECH was teria for certification would not necessarily be rich in
intended to stimulate the adoption of EHR software, child health functionality as specified by the literature.
but the legislation was careful to define what sort of
system could be called an EHR and what sort of uses
of the system would qualify as meaningful. The motiva-
ELECTRONIC HEALTH RECORD SYSTEM
tion for creation of a definition of MU was to ensure AND CHILD HEALTH
that physicians would implement systems that had Not all certified EHRs support all the published child
some benefits for patients and would enhance their health functions, and not all EHR systems are de-
ability to study care, to empower individuals, and to signed for pediatric care, so the pediatrician should
improve health outcomes. To ensure that EHR systems examine carefully the capabilities of any system in-
met the definition, a certification program was estab- tended for use in a practice serving infants, children,
lished in which software was required to demonstrate and adolescents. In advocating for the inclusion of
certain functions to become certified for the purpose EHR functionality that supports important pediatric
of the MU incentive program. There was never any work flows, pediatricians should point out that most
intent in the certification criteria to ensure that every functions important in pediatric care are also useful
EHR was appropriate for child health, but there are a outside of pediatric care. For example, drug dosing by
few criteria that do help in this regard. For example, body weight is critical in pediatrics, but has enough
the criteria require that the system have growth charts usefulness in geriatric care that it would also be desir-
and be able to communicate with immunization regis- able in nonpediatric systems. Likewise, weight and
tries. Although promising, these requirements fall height monitoring have application in adult care. The
short of what most pediatricians would consider ade- ability to record guardianship status and accommo-
quate. For instance, the growth chart requirement date proxy access is important in the care of adults
omits head circumference charts. Other gaps include with diminished capacity. Table 3-2 lists questions one
omission of head circumference from the vital signs might ask in the evaluation of the suitability of a sys-
criterion, omission of a requirement for weight-based tem for a child health environment.

Table 3-2 Pediatric Functions of an Electronic Health Record With Questions to Ask
About Electronic Health Record Functionality

FUNCTIONAL AREA QUESTIONS TO ASK


Growth monitoring Can the system plot growth data (height, weight, head circumference) over time and
allow simultaneous comparison to normative curves? Does it include normative curves
for special populations seen by the practice?
Does the system plot BMI against appropriate normative curves of percentiles?
Does the system indicate abnormalities in growth parameters (eg, flagging any weight
below a certain percentile value or a BMI above a certain percentile)?
Does the display of growth data allow magnification (zooming) of the display when
examining densely packed data points?
Does the system indicate corrections for prematurity on growth charts? Can the
pediatrician note events such as Tanner staging, bone age determinations, or growth-
arresting therapeutic episodes on the growth chart?
Does the system allow printouts of the growth curves for parents? Is the growth chart
viewable in the patient portal?
Immunization management Does the system have active interfaces to any state immunization registries? If so, what
is required to bring those interfaces live in the current practice?
Can the system analyze a record of immunizations and recommend what immunizations
are due at the time of the current encounter? At a designated future encounter?
Can the system analyze a record of immunizations and indicate when the next immuni-
zations are due? Are physicians alerted to this fact when the patient presents for care?
Can the system store lot numbers and the versions of vaccine information provided for
new immunizations?
Can the system incorporate data indicating that a given series of immunizations is
complete without having to manually enter the data on individual immunizations
administered in the past? If so, is this information on series completion incorporated
appropriately into decision support functions?
Can the system print paper immunization forms for school entry based on data in the
patient’s record?
CHAPTER 3 • Information Systems in Pediatric Practice 23

Table 3-2 Pediatric Functions of an Electronic Health Record With Questions to Ask
About Electronic Health Record Functionality—cont’d

FUNCTIONAL AREA QUESTIONS TO ASK


Medication prescribing Does the system suggest a drug dose based on actual body weight? On age? On
gestational age?
Does the system allow dosing based on a dosing weight rather than actual body weight?
Does the system display current body weight in the same view in which the user is
expected to create prescriptions?
If a non-weight-based dose is entered, does the system check drug doses for
appropriateness based on body weight?
Does the system support indication-specific dose ranges for a given medication?
Does the system round the dose to a dose that is easily measured by parents (eg, 3 mL
vs 2.8 mL, or ½ tablet vs 0.45 tablet)?
Does the system alert the user regarding allergies to medications and possible adverse
drug-drug interactions?
In the case of controlled substances for behavioral disorders, does the system allow the
user to authorize recurrent monthly prescriptions in accordance with applicable laws
on controlled substances?
Breast milk management In appropriate environments (eg, nurseries), does the system store data needed to
administer breast milk (patient and mother identifiers, expiration dates)?
At the time of delivery of the breast milk to the patient, does the system capture data
that validate the correct matching of patient to milk aliquot?
Data norms Does the system display the percentile value of each height, weight, and head
circumference in every place where such data are displayed?
Does the system indicate abnormal blood pressure based on age and height?
Does the system store and display age-dependent normative ranges as supplied by the
clinical laboratory?
Does the system allow graphical plotting of laboratory values over time, with age-based
normative ranges that change over the life span?
In cases in which documentation by exception is used, are physical examination findings
that normally change with age (eg, Babinski sign, unsteady gait) shown as normal at
appropriate ages?
Privacy Does the system store and display clear guidance to the user about who can access the
record in cases of adoption of foster care?
In the case of systems that allow parental access to the record (eg, a Web-based portal),
can the system limit this access to match the level of assent of an adolescent?
Does a way exist to represent multiple guardians or health care agent relationships in
the system?
Terminology In the portion of the EHR in which diagnoses are recorded, can the user specify rare
congenital syndromes without resorting to free text?
Can the problem list include items that are not typically considered specific diseases (eg,
high-risk social situations, developmental delay, immunizations up to date, vaccine refusal,
or school avoidance)?
In recording birth history, can the system distinguish specific terms that apply to the
mother from those that apply to the baby (eg, diabetes of the mother that affected
the baby as a fetus)?
Does the system allow retrieval of all patients with a particular diagnosis, symptom, or
physical finding?
Granularity Are ages displayed in units that are appropriate to the patient’s age (eg, 3 weeks of age
is not shown as 0 months of age)?
Can the user enter weight to the nearest gram or other suitable precision?
Pediatric decision support In the case in which guidelines are supported, can the system omit guidelines that are
appropriate only for adults?
Can the system filter reminders by age to reduce the number of inappropriate alerts?
Can the system trigger reminders based on age combined with other data such as
diagnosis or time since last encounter?
Adolescent privacy Can the system’s Web-based patient portal features match practice policy about who
can access the adolescent’s record?
Are there ways to flag certain types of information as confidential?
Can printouts or data displays accessible to parents be tailored to adolescents’ privacy
requests, within the boundaries of practice policy and applicable law?

BMI, body mass index; CDC, Centers for Disease Control and Prevention; EHR, electronic health record; FDA, US Food and Drug Administration.
24 PART 1: DELIVERING PEDIATRIC HEALTH CARE

NECESSARY FUNCTIONS OF AN of individual patient encounters), these systems will


become powerful tools for improvements in vaccine
ELECTRONIC HEALTH RECORD IN THE coverage. Population health tools in EHRs can facili-
PEDIATRIC SETTING tate outreach interventions that have been shown to
Growth Monitoring improve immunization coverage.
Fundamental to the practice of pediatrics is the analy-
Medication Prescribing
sis of growth, as documented by height, weight, and
head circumference. In the United States, curves To a much greater degree than in adult care, pediatric
showing the distribution of these measurements at prescribers compute doses of medications based on a
each age are published by the Centers for Disease recommended dosage of drug to be used per unit
Control and Prevention and the World Health Orga- of body weight. Although body surface area and ideal
nization; special curves for premature infants and body weight are sometimes used in pediatrics, actual
populations of children with specific congenital con- body weight is the most common basis for dose calcu-
ditions such as achondroplasia, Down syndrome, lations in general pediatric practice. Although most
Turner syndrome, or Williams syndrome are also EHR systems offer prescribing, not all offer weight-
available. Caution must be used in applying these based dosing support for many reasons, including
special charts to a given patient because, in some lack of standardization of dosages; although the US
cases, the data on which they are based were col- Food and Drug Administration (FDA)-approved label-
lected before the availability of treatments that may ing of drugs includes weight-based dosages for prod-
improve growth rates. Standard practice is to plot ucts approved for use in children, many products used
these values on the appropriate curve at each encoun- in children are not FDA approved, and many have
ter. Although the use of growth charts in this way has recommended dosages in drug handbooks that differ
not been expressly validated, it is a practically univer- from the approved product labeling. Another barrier
sal practice in pediatrics. Manually plotting these to computerized weight-based dosing decision sup-
points is laborious and prone to error. Computer port is the practice of rounding to convenient doses
systems into which these data are entered can easily (eg, whole milliliters are multiples of a 5-mL amount),
display a plot of growth data over time, just as they which makes calculating doses even more complex. In
can produce a temporal plot of other clinical data. addition to providing weight-based dosing support,
Pediatricians expect that these plots will behave in the best systems will also alert pediatricians regarding
much the same way as paper plots; with careful atten- allergies to medications and possible adverse drug-
tion to design, computer-based growth charts can drug interactions.
retain the analytic usefulness of the paper curves
Data Norms
while adding functions that no paper system can hope
to offer. The evaluation of any EHR intended for use When interpreting data from children—especially
in the pediatric setting should include a careful numerical data—age (and sometimes gestational age,
examination of growth chart functions, including cal- body measurements, or stage of sexual maturity) must
culation of body mass index and body mass index be taken into account. For example, blood pressure in
percentiles by age and gender. (See Table 3-2 for spe- adults is easy to interpret without referring to any of
cific questions to ask.) these factors; if it is above 120/80 mm Hg, then it is
abnormal. In child health care, interpreting blood
pressure requires either time-consuming references to
Immunization Management tables or the assistance of an electronic information
A common yet complex task in pediatric practice is system that incorporates pediatric norms. Assistance
determining which immunizations are due and when with interpretation using gender-, height-, and age-
they are to be administered. The rules for indications based norms is technically easy but often not imple-
and dosing intervals change at least every year and mented in EHRs. Pediatricians who are evaluating any
often more frequently as new vaccines come to market clinical information system should pay particular at-
and as the epidemiologic factors of preventable dis- tention to how the system assists the user with norma-
eases change. Many EHR systems sold today do not tive data (see Table 3-2). Figure 3-1 illustrates one of
offer the pediatrician any decision support for this the more complex examples of what it means to have
task, and a significant minority will not record immu- a rich pediatric context—the display of blood pressure
nizations. Immunization management is one of the and the accompanying percentiles to allow decision
more obvious functional areas in which a computer making.
can improve the pediatrician’s efficiency, yet the large Population health tools in the EHR should be able to
difference in complexity between child and adult im- identify those in need of care coordination based on
munization management poses an often insurmount- age-related abnormalities, like body mass index, body-
able implementation challenge to vendors of EHR weight percentile, and stages of hypertension.
systems. The ideal system will alert physicians regard-
ing overdue immunizations whenever the patient’s Terminology
EHR is accessed, or at some future date when an en- To be useful in decision support, terms used to de-
counter is planned (see Table 3-2 for appropriate ques- scribe clinical data (eg, symptoms, signs, diagnoses,
tions to ask). tests) need to be stored as a member of a defined ter-
As EHRs are used more for population health (the minology set, rather than as free text. Although free-
management of groups of patients outside the context text storage of clinical concepts provides maximum
CHAPTER 3 • Information Systems in Pediatric Practice 25

Vital Signs Vital Signs


. .
. .
. .
A BP 110/72 BP 110/72 View BP Tables B
. .
. .
. .
OK Cancel OK Cancel

Vital Signs Vital Signs


. .
. .
. .
C BP 110/72 96th% for age/height BP 110/72 95th% AAP BP Pathway D
. .
. .
. .
OK Cancel OK Cancel

Figure 3-1 The pediatric context. The degree to which an electronic health record system understands cases in which
pediatric care differs from adult care is a measure of its ability to present the pediatric context. Four fragments from a
hypothetical user interface illustrate the different levels of pediatric context that a system can provide. A, Level 0: No
recognition of pediatric factors. The system displays the patient’s blood pressure. This behavior is expected, but it fails to
reflect the pediatric complexities of blood pressure display. B, Level 1: Recognition of pediatric factors but no automation of
special functions. The system begins to offer some pediatric context by offering the user the opportunity to look up norms for
blood pressure in the same portion of the user interface that displays the blood pressure. C, Level 2: Recognition and basic
automation. The system goes one step further by calculating the percentile value for the blood pressure (perhaps the higher of
systolic or diastolic percentile values). D, Level 3: Recognition, automation, and integration with pediatric-specific evidence.
The system calculates the percentile and offers to take the user to a pediatric-specific guideline pathway of some sort.

flexibility (and often speed) to the user at the point of com) or Medcin (Medicomp Systems, Chantilly, VA,
care, free-text data entry is subject to typographic er- www.medicomp.com).
rors, redundancy, and the use of nonstandard terms.
There are some emerging techniques that allow analy- Granularity
sis of free-text clinical entries, but physicians cannot Pediatrics involves smaller units of time, weight, and
realize the full value of an EHR without some amount distance than adult health care. The scale of these
of encoded data. measurements varies with age and with care setting.
The most readily available encoded data from clini- For example, age to the nearest minute is important in
cal information systems has been claims data because the delivery room, but in the newborn nursery, age to
these tend to be generated reliably. The biggest draw- the nearest hour is usually sufficient (eg, for evaluating
back of the use of claims data in pediatrics is that the newborn screening laboratory results). In the first few
terminology system used to encode diagnoses, the months of life, the patient’s age should be expressed
International Classification of Diseases, ninth edition, initially in days, but later in weeks and then months.
Clinical Modification (ICD-9-CM) is often not detailed Body weight to the nearest gram is required in the
enough to adequately express important diagnostic neonatal intensive care unit setting, but is not usually
concepts. Although International Classification of Dis- necessary in the outpatient follow-up of older infants.
eases, tenth edition, Clinical Modification ( ICD-10-CM), Doses measured in fractions of a milliliter are neces-
mandated for implementation by the US Center for sary for some medications. EHRs intended for use
Medicare and Medicaid Services by October 1, 2015, with young infants should be able to adjust units of
offers slightly more granularity, the extra detail it in- measure to the appropriate scale for the situation at
cludes has little clinical importance. There will always hand. The evaluation of any EHR system should en-
be a need for clinical terminology sets that are detailed compass its capacity to manage basic data on very
enough to meet the requirements of physicians at the small and very young infants.
point of care. Terminology as displayed in the user
interface should employ terms physicians use to de- Aliases
scribe concepts. SNOMED-CT (Systematized Nomen- Name changes are more common in children than in
clature of Medicine—Clinical Terms) offers some adults because of naming conventions at birth. Names
promise in this area, but EHR vendors more com- associated with laboratory values obtained for a new-
monly offer proprietary terminology systems like IMO born may not match the name of the patient when the
(Intelligent Medical Objects, Northbrook, IL, e-imo. infant is brought to the pediatrician’s office for primary
26 PART 1: DELIVERING PEDIATRIC HEALTH CARE

care. Name changes may also occur for children as an EHR is fundamentally a list of patients. Member-
a result of divorce, remarriage, or adoption. EHRs ship in this list can be determined automatically
should be able to store and allow searching for results (through a diagnosis-based inclusion rule) or manu-
based on multiple aliases. ally by clinical users. Registries in an EHR typically
present selected data points for each patient that are
Patient and Parent Education relevant to the monitoring of disease state, such as
Most EHR systems, and many stand-alone systems, viral load laboratory data for HIV patients or last he-
offer electronic sources of information for parents and moglobin concentration for children with sickle cell
patients. For these sources to be effective in pediat- disease. Registries also typically support the display of
rics, this educational information needs to be available severity scores, which, in turn, can be used to drive
in versions that are appropriate—in both wording and prioritization of outreach efforts.
reading level—for variable parental reading levels. Of course, population management tools such as
Many authorities recommend that these informational registries can be used to target areas of health needs
materials be written at a fourth-grade level. Materials outside chronic care. A registry that identifies patients
for infants should refer to the patient in the third per- who are due for (or behind in) immunizations can
son, and material for adolescents should be written in boost immunization rates. The same can apply to well
the second person. child care or other forms of health supervision. This
kind of data-driven outreach is fundamental to the
Data Source modern concept of the medical home.
Information in adult care comes from the patient in As more physicians adopt EHRs, there are more op-
most cases. In pediatrics, a parent provides most in- portunities to provide patients and families with direct
formation, but schools, other family members, and a access to their own records and to allow them to con-
potentially complex system of guardians and repre- tribute data directly through personal health record
sentatives may also contribute to data on a child. EHR portals. The ubiquity of smart phones and other Inter-
systems should support an indication of the source of net-connected devices makes it possible for families of
medical history. children with chronic disease to view the medical re-
cord, complete surveys online, and even file data di-
Adolescent Privacy rectly to the EHR. This data entry has the potential to
An ideal for care held out by adolescent medicine spe- get families more engaged in care while moving the
cialists is that adolescents should be able to seek care data collection process closer to the patient. As EHRs
without being forced to reveal certain information to make it more possible to perform care management
their parent or guardian. This need for confidential activities outside the context of the office visit, direct
care becomes accentuated when clinical information interaction of the family and patient with the record
systems share information with guardians and when will become more important. Patient portals should
state laws dictate policy along these lines. To offer this support appropriate features to protect adolescent
ideal of confidential care, therefore, an EHR must ac- privacy according to practice policy. For example, if it
commodate an array of functions aimed at limiting is the policy of the practice to restrict parents’ online
dissemination of information, or at least being able to access without the adolescent’s assent, the system
comply with practice policies and laws aimed at who should allow management of that assent.
is allowed to see adolescents’ health information.
Examples of these functions are listed in Table 3-2.
DECIDING TO IMPLEMENT AN
ELECTRONIC HEALTH RECORD
MANAGING CHILDREN WITH CHRONIC In a small practice, the decision to implement an EHR
system, the choice of vendor, and the responsibility to
ILLNESSES AND POPULATION HEALTH fund it fall to the physician. In larger practices or in
MANAGEMENT an academic medical center, these decisions take
For a physician caring for children with chronic ill- place in the hands of a committee, which must try to
ness, the quantity and complexity of information make accommodate the needs of diverse physician groups
the EHR a necessity. By simply storing and organizing with a solution from a single vendor. These decisions
this clinical information, the EHR facilitates the main- are complex, time-consuming, and momentous. De-
tenance of an effective medical home for children with spite the widely touted assumption that the use of
chronic or complex disease. But the EHR can do more EHRs improves the quality of care, this claim has
than just store the information; it can provide decision never been validated for an EHR system as a whole.
support to increase the likelihood that the right care is Although individual pieces of an EHR have been
given at the right time. Although this decision support shown to improve adherence to health supervision
can take the form of automated alerts, there are guidelines, documentation completeness, and inci-
simpler, less obtrusive forms as well, such as order dence of medication errors, the sparse results on
sets, documentation templates that incorporate care health outcomes have been mixed. The best reason to
guidelines, and care plans that may be specific to a implement an EHR in pediatric practice is to auto-
particular diagnosis or risk. mate and control processes that serve the larger goal
A population health tool within the EHR that will be of providing excellent care. The EHR should give pe-
of increasing importance to those who care for chil- diatricians the opportunity to spend less time on
dren with chronic illness is the registry. A registry in mundane tasks, such as following documentation
CHAPTER 3 • Information Systems in Pediatric Practice 27

guidelines, and more time on important tasks, such as costs. Pricing plans vary greatly from vendor to vendor,
talking to families and proactively managing their and no vendor offers a pricing plan that a physician can
patient population within the medical home in a team apply without a lengthy interaction with a sales repre-
environment. sentative. Old published data from the American Acad-
Several methods can be used for approaching the emy of Family Physicians suggest that an EHR system
first step, which is choosing a list of EHR systems to costs approximately $5,500 per physician per year, with
consider implementing. the cost rising to $7,200 per physician per year for a
• Integration: The most important predictor of suc- combined EHR and practice management system that
cess in an EHR implementation is how well the sys- includes billing, patient scheduling, accounts receiv-
tem works with existing information systems in the able, and similar nonclinical functions. Open-source
environment, especially systems that are critical to EHR software, in which the software itself is included
the financial success of the clinical operation. Most in the price, may not be any cheaper than commercially
physician groups and hospitals begin their EHR sold software, given that the bulk of an EHR system’s
project by looking at what systems work with their cost comprises installation, setup, and ongoing sup-
practice management and administrative systems. port. EHR software vendors are creating pricing plans
• Peer recommendations: Another powerful influence at all points along the spectrum, hoping to capitalize on
over the product-selection process is word-of-mouth tradeoffs that physicians are willing to make to keep the
recommendations from professional peers. The price low.
American Academy of Pediatrics (AAP) Council on A recognized factor in the success of any EHR sys-
Clinical Information Technology supports these tem implementation is support among the physicians
communications through its meetings, electronic who will be using the system. Implementing an EHR
mailing list, and Web site (aap.org/informatics/ system is disruptive to a practice because it changes
cocit.html). Although there have been efforts to cre- almost all established work patterns. EHR implemen-
ate descriptions of what functions are needed in tation also requires physicians and staff to agree on
child health, there is no certification process that a the best procedures for a given task because comput-
physician can use to gain assurance that a given erization tends to require uniform procedures. An es-
product works in pediatric settings. Demonstrated sential component is to have a physician champion
usefulness in setting similar to a physician’s own who has major responsibility for the EHR implemen-
setting is still the best way to know how well the tation in the practice. This person should be a genuine
EHR can work. Of course, variations in what ver- leader in the practice. In addition to the physician
sion is implemented and decisions made as to how leader (and, perhaps, leaders in other job roles), the
it should be implemented make each EHR installa- practice needs to decide on a process for introducing
tion different from the next. the system into its work. The 2 general implementa-
• Purchasing consortia: Children’s hospitals, physi- tion approaches are the big bang, in which a given
cian practice organizations, medical societies, and system is brought up to full operation over a very
health data exchange organizations often organize short period (eg, a week), or the gentler, but slower,
group purchasing arrangements or subsidies to incremental approach, whereby pieces of the system
allow practices to purchase EHRs and support are put into place gradually and used more and more
services at a lower cost. Although these business over a longer period. Another technique for introduc-
arrangements do not necessarily ensure greater us- ing an EHR system in a manageable fashion is to ei-
ability of the software, larger consortia of purchas- ther reduce the number of patients to be seen during
ers carry more clout in driving the decisions about the rollout (not an economic possibility for most pe-
how the product is designed and implemented. diatricians) or to use the system on only a small
Furthermore, such consortia often have experience number of patients per day at first. The incremental
installing systems in similar practices, have learned approach with graduated numbers of patients is fea-
what works in the community, and can provide an sible but extends the period in which the practice must
instant group of experienced peers to help a prac- operate in an environment in which some information
tice through the transition. is on paper and some is in the EHR.
After candidate systems have been selected, most The full transition to an EHR system, in which no
physicians attempt to evaluate them systematically by paper charts are used at all, is another challenge to
interviewing vendors and attending demonstrations. EHR implementation. Information in the paper chart
Professional meetings, including those sponsored by is useful and necessary for a long time (years, in some
the AAP, offer an efficient way of beginning this pro- cases). Manually entering data from the old charts
cess through exhibit halls or public competitions be- should be done only for the most complex patients,
tween systems. Site visits to practices that are similar whose charts might benefit from manual sifting of old
to the physician’s own are expensive, but offer the data. For most patients, scanning of selected pieces of
most realistic information on how the system per- paper (growth charts, immunization records, latest
forms. The value of site visits is limited by the fact that clinic visit, latest consultant reports) may be suffi-
no 2 practices are alike and that current users may cient. Alternatively, the physician can simply continue
offer a biased opinion about a system purchased and to pull paper charts for the visits and enter new data
implemented at great cost. in the EHR as needed. This task can continue until
The cost of EHR systems is the most frequent barrier enough time has passed that the paper charts are no
cited by physicians to EHR implementation. No easy longer worth having for most patients. As long as a
answer exists to the question of how much an EHR data source is of sufficient quality (ie, has reliable
28 PART 1: DELIVERING PEDIATRIC HEALTH CARE

patient identifiers), some data may be worth loading trend suggests that documentation compliance guide-
into the new EHR electronically. For example, even lines from all payers will be getting stricter, a system
basic data like encounter dates or claims data can by which an EHR is the only way a physician can be
give useful context for patterns of care. Most pediatri- expected to generate the detail necessary to justify
cians will continue to maintain physical storage payment may be a foregone conclusion, regardless of
facilities for old paper charts because of statutory re- efficiency considerations.
quirements, but the cost of maintaining this storage
will eventually shrink because of the declining need to
access archival data. DIAGNOSTIC DECISION SUPPORT
The question of whether the cost of an EHR system The use of a computer to aid in the diagnosis of chil-
has a financial return is legitimate. Although savings dren with challenging presentations has been a tanta-
can be demonstrated from electronic order entry be- lizing possibility since the dawn of the computer age.
cause of avoidance of errors in hospitalized adults or Diagnostic decision support systems (ie, systems that
from reductions in redundant imaging because of ac- can take a list of signs and symptoms and suggest pos-
cess to exchanged data, research on the return-on- sible diagnoses) with pediatric clinical domains have
investment question is not extensive for a wide variety been available for years, yet few physicians use these
of practice scenarios. Some of the benefits of an EHR systems, and demand for such systems has been so
system accrue to people and organizations other than low that few vendors of commercial EHR systems
the physician. For example, if physicians are asked to have attempted to integrate an automated diagnostic
provide immunization data from their EHR to update decision support program into their products. It is
the state immunization registry, in all likelihood the more common instead to offer links to medical texts
entire cost of this project will fall to the practice. from the EHR. Perhaps when EHRs become more
For the pediatrician’s practice, EHRs can signifi- widespread, resurgence in interest in the use of these
cantly reduce personnel costs by eliminating the pulling, diagnostic aids will take place, if they can be inte-
filing, and locating (often extremely time-consuming) of grated into new patterns of work. More practical
paper charts for office visits, telephone calls, and pre- means of decision support exist commonly in EHRs,
scription refills, among other duties. EHRs can also like order sets that suggest standard treatments or
dramatically reduce the labor required to gather data documentation templates that remind the physician
for quality reporting purposes, provided the system is about ideal care.
set up to capture the appropriate data elements. Other
cost savings from EHRs are listed in Box 3-1.
Whether time is saved documenting care depends AAP POLICY
on the state of the user’s paper-based documentation American Academy of Pediatrics Committee on
in the first place. If the most common Medicare and Adolescence and Council on Clinical Information
Medicaid guidelines are followed when coding for Technology. Standards for health information
evaluation and management services, then the EHR technology to ensure adolescent privacy. Pediatrics.
will undoubtedly perform this task faster and more 2012;130(5):987–990 (pediatrics.aappublications.org/
accurately than any paper system. Often in pediatric content/130/5/987)
practices, the paper chart system does not comply American Academy of Pediatrics Committee on Pediatric
Emergency Medicine and Council on Clinical
with these guidelines. Implementation of an EHR can
Information Technology; American College of
raise the bar dramatically for documentation detail, Emergency Physicians Pediatric Emergency Medicine
given that Medicare compliance is a major selling Committee. Emergency information forms and
point for these systems in adult care. Because the emergency preparedness for children with special
health care needs. Pediatrics. 2010;125(4):829–837.
Reaffirmed July 2014 (pediatrics.aappublications.org/
content/125/4/829)
American Academy of Pediatrics Committee on Practice
and Ambulatory Medicine. Immunization information
BOX 3-1 Cost Savings of Electronic Health systems. Pediatrics. 2006;118(3):1293–1295. Reaffirmed
Records to Practice October 2011 (pediatrics.aappublications.org/
content/118/3/1293)
• Reduction or elimination of transcription costs American Academy of Pediatrics Council on Children With
Disabilities and Medical Home Implementation Project
• Elimination of missing charges
Advisory Committee. Patient- and family-centered care
• Reduction of medical records staff time and storage coordination: a framework for integrating care for
space children and youth across multiple systems. Pediatrics.
• Elimination of time spent waiting for chart pulls or 2014;133(5):e1451–e1460 (pediatrics.aappublications.org/
finding paper charts content/133/5/e1451)
• Reduction of rework attributable to illegible or off- American Academy of Pediatrics Council on Clinical
formulary prescriptions Information Technology. Health information technology
and the medical home. Pediatrics. 2011;127(5):978–982
• More efficient tracking of laboratory results and (pediatrics.aappublications.org/content/127/5/978)
referrals American Academy of Pediatrics Steering Committee on
• Reduction of resources spent managing phone calls Quality Improvement and Management and Committee
(if secure messaging is used) on Practice and Ambulatory Medicine. Principles for the
development and use of quality measures. Pediatrics.
CHAPTER 4 • Evidence-based Medicine 29

2008;121(2):411–418 (pediatrics.aappublications.org/ verify the validity of the information. Another reason for
content/121/2/411) using an organized approach to examine the medical
Gerstle RH, Lehmann CU; American Academy of Pediatrics literature is that clinical practice is rich with questions.
Council on Clinical Information Technology. Electronic On average, for every 3 outpatients seen, physicians
prescribing systems in pediatrics: the rationale and
have 2 questions that are pivotal to the care of these pa-
functionality requirements. Pediatrics. 2007;119(6):
1229–1231 (pediatrics.aappublications.org/content/ tients. A similar number of questions arise during the
119/6/e1413) care of inpatients. EBM is therefore worth the effort
Kim GR, Lehmann CU; American Academy of Pediatrics because it allows physicians to remain current with best
Council on Clinical Information Technology. Pediatric practices and improve patient outcomes.
aspects of inpatient health information technology
systems. Pediatrics. 2008;122(6):e1287–e1296 (pediatrics. Step 1: Ask
aappublications.org/content/122/6/e1287) Formulating an answerable and searchable clinical
Spooner AS; American Academy of Pediatrics Council on question is the the first step of the EBM process. It
Clinical Information Technology. Special requirements
focuses the busy physician on exactly what is needed
of electronic health record systems in pediatrics.
Pediatrics. 2007;119(3):631–637. Reaffirmed May 2012
to provide patient care. Spending a few minutes to
(pediatrics.aappublications.org/content/119/3/631) formulate and format a good clinical question is well
worth the investment because this effort saves time
later in the searching process.
SUGGESTED READINGS The 2 types of questions in clinical medicine are
Blumenthal D, Tavenner M. The “meaningful use” regulation background and foreground. Background questions
for electronic health records. N Engl J Med. 2010;363(6); deal with disease-specific information and the basics of
501–504 a condition. An example of a background question is,
Britto MT, Tivorsak TL, Slap GB. Adolescents’ needs for “What is ondansetron and how does it work?” The an-
health care privacy. Pediatrics. 2010;126(6):e1469–1476
swers to background questions are most often found in
Jani YH, Ghaleb MA, Marks SD, et al. Electronic
prescribing reduced prescribing errors in a pediatric
standard textbooks and review articles. Foreground
renal outpatient clinic. J Pediatr. 2008;152:214–218 questions deal with patient-specific information re-
Kirkendall ES, Spooner SA, Logan JR. Evaluating the garding the diagnosis, prognosis, or therapy of a con-
accuracy of electronic pediatric drug dosing rules. J Am dition. Unlike background questions, the answers to
Med Inform Assoc. 2014;21(e1):e43–e49 these questions are best found in the medical literature.
Lehmann CU, O’Connor KG, Shorte VA, Johnson TD. Use Time is saved searching for answers to foreground
of electronic health record systems by office-based questions if they are first expressed in the format
pediatricians. Pediatrics. 2015;135(1):e7–e15 known as PICOTT: patient, intervention, comparison,
Lehmann C, Kim GR, Johnson KB, eds. Pediatric outcome, type of question, and type of study format.
Informatics: Computer Applications in Child Health.
An example of a foreground question is, “In children
New York: Springer; 2009
with acute viral gastroenteritis, does ondansetron re-
duce symptoms and prevent admission?” Putting this
question into the PICOTT format focuses busy physi-
cians on exactly the answer they are interested in find-
ing and begins the search process (Box 4-1).
Chapter 4 Step 2: Acquire
EVIDENCE-BASED MEDICINE Physicians acquire information from the medical lit-
erature in 2 ways: passively (gathering) and actively
(hunting). Physicians gather information when they
Brett W. Robbins, MD peruse articles that come to them, either through sub-
scription or happenstance. Acquiring the article takes
little effort, but the author of the article, not the physi-
Evidence-based medicine (EBM) is the conscientious, cian, defines the question. This process is further lim-
explicit, and judicious use of current best evidence to ited by a lack of context for the article because other
solve clinical problems. It requires integration of indi- data that may exist on this same question are not
vidual clinical expertise and patient preferences with the
best available external clinical evidence from systematic
research and consideration of available resources. EBM
provides the pediatrician with an explicit process to
BOX 4-1 Example of a Foreground
locate, appraise, and apply clinical research reports to
patient care. The 4-part process of EBM (ask, acquire, Question
appraise, apply) provides an organized framework to
Patient: Child with acute viral gastroenteritis
facilitate bringing evidence to the point of patient care.
Intervention: ondansetron
Comparison: Placebo
WHY BOTHER? Outcome(s): Reduction of symptoms, prevention of
The proliferation of medical literature is rapid. A large admission
number of new randomized trials are published each Type of question: Therapy
month. To keep abreast of advances in health care re- Type of study needed: Randomized controlled trial
quires an organized approach that includes methods to
30 PART 1: DELIVERING PEDIATRIC HEALTH CARE

Table 4-1 Schema for Ranking Sources of Evidence

SYSTEMATICALLY
SOURCE SUMMATIVE VALID PREAPPRAISED SEARCHED
Cochrane Database of Systematic Reviews + + + +
(www.cochrane.org)
Evidence-Based Clinical Practice Guidelines + + + +
(www.guidelines.gov)
Clinical Evidence (www.clinicalevidence.com) + + + +
Essential Evidence Plus (www.essentialevidenceplus. + + + +
com)
ACP Journal Club (www.acpjc.org) − + + +
InfoPOEMs/InfoRetriever (www.infopoems.com) − + + +
Textbooks/Up-to-Date (www.uptodate.com) + − − −
AAP Grand Rounds (aapgrandrounds. − − − +/−
aappublications.org/)
PubMed (www.pubmedcentral.nih.gov/) − − − −

⫹ ⫽ yes, ⫺ ⫽ no; ⫹/⫺ ⫽ somewhat.

known. Thus, although gathering requires little en- validity, quantifying results, and applying the evidence
ergy, it also leaves little under the direct control of the to patients. Table 4-2 is an example of some of the
physician. common study types and the information that is found
Hunting is actively pursuing an answer to a physi- in the User’s Guide. It also includes the most efficient
cian-generated PICOTT question. In general, the method of finding each type of article in PubMed.
search terms are drawn directly from the PICOTT
question itself. Time is best spent hunting in grounds Assessing Validity
known to have valid, preappraised, and summative Each study type in the Users’ Guide to the Medical
evidence (Table 5-1). The best databases will have Literature has a list of criteria to determine if a study
done most of the work already. Physicians should is valid. These criteria are based on epidemiologic
search in a database where they know that all the in- principles and are explained in detail using a clinical
formation has been systematically searched to include example. The criteria appear roughly in their order of
everything that exists on the topic. The gold-standard importance, but they are not intended to lead to a di-
database in this regard is the Cochrane Database of chotomous decision of being valid or not valid for a
Systematic Reviews, which is a database that is sys- study. Rather, they are intended to assist the physi-
tematically searched, preappraised, and up to date. cian in determining the relative validity of the study
The reviews are updated about every 2 to 3 years. and thus the relative strength of its results. If a study
Evidence-Based Clinical Practice Guidelines and Clini- is not valid, then its results are in question and should
cal Evidence are also systematically searched and not be used in the clinical decision-making process.
preappraised. These sources are also updated peri- An example of the validity criteria for therapy
odically. A clearinghouse database of all high-level (randomized-controlled trial) is found in Box 4-2.
databases is Essential Evidence Plus (www.esssential
evidenceplus.com), where busy physicians can search Quantifying Results
all of the high-tier and rigorously searched databases The Users’ Guide to the Medical Literature provides
at one site. Second-tier databases include summaries methods to determine the magnitude of effect of an
of individual articles such as the ACP Journal Club intervention in a more clinically meaningful way than
and InfoPOEMs, both of which contain some pediat- is offered by P values. Each type of article has its own
ric literature. If these sources are unrevealing, the methods and terms, such as number needed to treat
physician can search in databases that are unfiltered (NNT) for therapy, likelihood ratios (LR) for diagno-
for validity such as PubMed (see Table 4-1 for links to sis, and relative risk (RR) for prognosis. For example,
these databases). Early in a physician’s career is the the NNT is calculated by dividing 100 by the absolute
best time to form a strong working relationship with difference between the outcome rates of the inter-
the medical librarian, who can assist with questions vention and placebo groups. The result is the number
and assist in accessing these databases. of patients that need to be treated to prevent one bad
outcome or to cause a good outcome. For example, in
Step 3: Appraise a study of 215 children presenting to the emergency
Once an article is located, the next step is to determine department with mild to moderate dehydration from
its validity. The Users’ Guides to the Medical Literature, viral gastroenteritis, of those randomized to treat-
published by JAMA, is an excellent resource. The rel- ment with ondansetron, 14% vomited in the next
evant types of study designs are described using prin- 1-hour oral rehydration period after medication ad-
ciples of epidemiology, from randomized controlled ministration. Of the patients randomized to placebo,
trials to cost-effectiveness analyses. A clinical example 35% vomited in this hour. This result was statistically
is used to lead the reader through 3 tasks: assessing significant (P ⬍ 0.001), with an NNT of 100/(35−14) or
CHAPTER 4 • Evidence-based Medicine 31

Table 4-2 Commonly Confused Terminology in Evidence-Based Medicine

HOW TO FIND
STUDY STATISTICS ON OVID
TYPE TIMELINE LOGISTICS USED COMMENTS MEDLINE
Randomized Prospective Single group of Relative risk Gold standard; Limit to randomized
controlled trial patients randomized reduction; most powerful control trial
(therapy or to 2 or more absolute risk information publication type
prevention) therapeutic or reduction;
screening methods number
needed to
treat
Cohort Prospective or Single group of Relative risk— A comparison Combine the following
(prognosis) retrospective patients gathered at predicts cohort may or MeSH heading with
a common point in outcomes may not exist subject search—
their diseases and Framingham expand cohort
followed forward in study is good studies
time example of
retrospective
cohort
Case control Retrospective Group of patients Odds ratios— The most Combine the following
(harm) with the disease predicts difficult to MeSH heading with
compared with exposure(s) control for subject search—
group of patients bias when expand case-control
without the disease conducting studies
Look backward for
exposure(s)
Diagnostic test Prospective Single group of Sensitivity This point is Combine the following
(diagnosis) (optimally) patients at risk Specificity where MeSH heading with
for a disease; Likelihood physicians use subject search—
All get tested ratios pretest and expand “sensitivity
Odds ratio posttest and specificity”
probabilities
along with
thresholds
Meta-analysis Retrospective All relevant studies Effect size Can combine Limit to meta-analysis
(overview) look at addressing the same any of the publication type
multiple question combined study types,
studies mathematically as if most com-
they were one large monly therapy
trial and diagnosis

about 5. Thus the physician would need to treat 5


BOX 4-2 Validity Criteria for a Randomized children with mild to moderate dehydration with on-
Controlled Trial dansetron rather than placebo to prevent 1 from
vomiting in the next hour. In addition, at the end of
Did experimental and control groups begin the study the hour-long oral rehydration period 14% of the
with a similar prognosis? ondansetron-treated children and 33% of those re-
• Were patients randomized? ceiving placebo needed intravenous (IV) rehydration.
• Was randomization concealed? (NNT ~ 6), but hospital admission rates were no dif-
ferent (4% vs 5%). Other outcomes that are nondi-
• Were patients analyzed in the groups to which they were
randomized? That is, did an intention to treat exist?
chotomous, such as length and volume of IV fluid
needed and time in the emergency department, were
• Were patients in the treatment and control groups
in favor of ondansetron as well. An NNT cannot be
similar with respect to known prognostic factors? That
calculated from this type of continuous data unless
is, were baseline characteristics equal?
an arbitrary cutoff is set to make the outcome di-
Did experimental and control groups retain a similar chotomous (eg, the percentage of children who spent
prognosis after the study started? more than 4 hours in the emergency department).
• Were patients aware of group allocation? The NNT is more clinically meaningful than a simple
• Were physicians aware of group allocation? P value and helps the physician balance risk and ben-
• Were outcome assessors aware of group allocation? efit more explicitly. Not only is a low NNT important,
Was follow-up complete? it is also necessary to understand the risks and ben-
efits of the treatment and underlying disorder to
32 PART 1: DELIVERING PEDIATRIC HEALTH CARE

make an informed decision regarding the proposed these 4 factors in making the decision. The process of
therapy. In this example, children in the ondansetron EBM provides the validity and thus strength of the
group on average had 1.4 episodes of diarrhea in the evidence. In doing so, it does not replace clinical
oral rehydration hour vs 0.5 episodes on average for judgment, but rather informs it. Patients have the
the placebo group (P ⬍ 0.001). Again, an NNT cannot right to refuse an effective intervention with valid
be calculated from this continuous outcome. The only evidence behind it, even if the intervention is judged
other adverse event would be cost of the medication, to be worthwhile. Furthermore, even if an interven-
but one needs to look at overall costs of IV hydration tion is proven to be effective by valid evidence and
as well when comparing costs. the physician and patient agree to use it, the inter-
The NNT is difficult to interpret without its preci- vention may not be readily available or financially
sion, or 95% confidence interval. For our ondansetron viable. This fluidity of interaction of these 4 issues
example, given that the study population is of moder- results in different decisions on different days with
ate size (N = 215), the confidence intervals around our the same evidence, and perhaps even with the same
NNT of 6 for intravenous rehydration are moderately patient.
wide (3-17). Thus we are 95% certain that our true
NNT falls somewhere between 3 and 17.
TIME
Step 4: Apply For EBM to be useful to the busy pediatrician, it has to
After determining that an article is valid and quantify- be time efficient. Three suggestions might make EBM
ing its results, the final step is to decide whether it efficient in a busy practice. First, the more physicians
applies to the patient. This process has less to do with use the process, the more efficient they become.
the inclusion and exclusion criteria than with the pa- Learning the EBM process mimics learning how to
tient’s underlying physiologic condition. Inclusion and perform a history and a physical examination; effi-
exclusion criteria are written for logistic purposes of ciency comes with time and practice. Second, hunt
the study itself rather than for the person to whom the and gather in databases that are known to be fertile.
information can be applied. Patients who may not Focus on databases such as Essential Evidence Plus,
have met inclusion criteria for the study may still ben- the Cochrane Database, Clinical Evidence, and www.
efit from the study results. However, if something in guideline.gov In doing so, clincians can be assured
the patient’s underlying physiologic condition is very that the information obtained has been thoroughly
different from the patients in the study, then the find- searched, assessed, and summarized. Third, hunt and
ings from the study may not apply to this particular gather only those questions that are common to actual
patient. In the case of the ondansetron study, the physi- practice, are critical to an individual patient’s care, or
cian might be appropriately hesitant to apply this evi- involve subjects about which physicians are intensely
dence to children presenting for vomiting from other curious.
etiologies such as increased intracranial pressure.
In making the decision whether to use valid evi- GETTING STARTED
dence for a particular patient, the physician must The Users’ Guides to the Medical Literature is the
balance 4 factors: the evidence, her or his own clini- best resource on how to learn, practice, and teach
cal judgment, the patient’s values and preferences, EBM because it is complete, easy to read, and well
and the clinical state and circumstances at the time organized; it also comes with a CD-ROM and on-line
the decision needs to be made (Figure 4-1). The phy- version with all the mathematics distilled to simple
sician must decide how much weight to give each of calculators. When an article from the literature is
read, the correlate chapter feature should be used to
guide the assessment of the article. Over one-half of
Venn Diagram of Clinical Decisions the foreground questions asked in practice deal with
therapy, diagnosis, and disease management. Thus, if
physicians are adept at critically appraising these
types of articles, then they are well prepared to an-
Evidence swer most of their clinical questions. The next time a
clinical question is worth the time to research, the
physician should start with one of the fertile data-
bases. If the inquiry is a common question or about a
common disorder, then in all likelihood relevant evi-
Medical dence that is preappraised, presearched, and pre-
Decision summarized will exist.
Clinical
Patient Values
Experience CONCLUSION
Patients deserve to have physicians who make deci-
sions regarding their care based on sound evidence.
EBM provides an explicit, transparent process to track
Clinical State and Circumstances down information, assess its validity, and apply it to
Figure 4-1 Venn diagram of clinical decisions. individual patients. It does not replace sound, seasoned
clinical judgment, but rather informs it. A growing
CHAPTER 5 • Quality Improvement in Practice 33

array of resources is now available that makes the outcomes and are consistent with current professional
process timely and thus useful to the busy primary knowledge.” This definition, which provides a founda-
care pediatrician. tion for current thinking, acknowledges the impor-
tance of outcomes, the key roles of individuals and the
public in determining which outcomes matter, the
TOOLS FOR PRACTICE
essential role of probability (doing the right thing even
Medical Decision Support if the right result does not always occur), and the con-
• BMJ Clinical Evidence (book), British Medical Jour- straint placed on current quality of care by the current
nal (www.clinicalevidence.com/ceweb/index.jsp) state of knowledge.
• Essential Evidence Plus (Web site), (www.essential The IOM refined its definition in the report, Cross-
evidenceplus.com) ing the Quality Chasm, which outlined 6 specific aims
for the health care system, now widely viewed as the
AAP POLICY critical dimensions of quality. These aims, provided
American Academy of Pediatrics Steering Committee on here along with explanations behind them, are that
Quality Improvement and Management. Classifying health care be
recommendations for clinical practice guidelines. • Safe: Safety (defined here as protection from harm
Pediatrics. 2004;114(3):874–877 (pediatrics.aappublications. as a consequence of health care) is a system prop-
org/content/114/3/874) erty rather than a reflection of individual shortcom-
ings; system redesign is the necessary strategy to
address shortcomings in this area.
SUGGESTED READING • Effective: Effective care refers to the reliable deliv-
Guyatt GH, Rennie D. Users’ Guides to the Medical ery of care that is known to be more likely to
Literature. A Manual for Evidence-Based Clinical
achieve desired results; that is, care that is consis-
Practice. Chicago, IL: JAMA Press; 2001
tent with evidence when available with appropriate
consideration of individual patient characteristics
and preferences.
• Efficient: Efficient care refers to the judicious and
appropriate use of resources or, more specifically,
Chapter 5
not delivering care known to be ineffective (elimi-
QUALITY IMPROVEMENT nating overuse).
• Patient centered: Patient centeredness is the core,
IN PRACTICE central aim of health services. The fundamental
Charles J. Homer, MD, MPH; Victoria W. Rogers, MD definition of quality refers to outcomes desired by
patients as the key aim of care. The experience of
care is one dimension of patient centeredness, and
satisfaction with care is one component—a subjec-
INTRODUCTION tive assessment of how these experiences compare
Quality of care has become a central theme in the with expectations. In child health, this is better
delivery and management of health care. The focus on framed as patient and family centeredness.
quality results from consistent data indicating that • Timely: Timeliness refers to eliminating the delays
health care in the United States has a “serious and that are omnipresent in health care; it is a dimension
pervasive . . . overall quality problem,” and that “the that clearly affects efficiency and patient centered-
burden of harm conveyed by the collective impact of ness, and it affects safety (eg, delay in providing a
all of our health care quality problems is staggering.” needed immunization as a result of scheduling) and
Data from both inpatient and outpatient settings in effectiveness (delays in appointments for appropri-
pediatrics show widespread gaps in care. A recent, ate medical tests and therapies).
detailed analysis of ambulatory health care for chil- • Equitable: Quality applies to the care of all patients,
dren found that children receive recommended care not simply subsets of patients in the care of the phy-
less than one-half of the time, and the performance of sician. The IOM report Unequal Treatment: Con-
children’s health care was 10 percentage points lower fronting Racial and Ethnic Disparities in Health Care
than a comparable assessment of adult care. demonstrates that disparities of care exist through-
Fortunately, methods and tools that enhance the out the health care system and calls for widespread
quality of care are increasingly available and can be educational and improvement efforts to eliminate
applied in primary care settings. Programs to enhance them.
care have been successful in improving preventive Until recently, quality improvement efforts in pri-
services and the care of children with both acute and mary care focused on 1 or, at most, 2 aspects of
chronic conditions. This chapter reviews these meth- quality—such as effectiveness (eg, use of appropriate
ods and provides practical guidance for applying medications for asthma or rates of immunization)
them in practice. or patient centeredness (typically measured in terms of
patient satisfaction). Nonetheless, the IOM concept of
DEFINITIONS quality suggests that high-quality programs that meet
The Institute of Medicine (IOM) defined quality as “the the needs of children and families are characterized by
degree to which health services for individuals and excellence in all 6 areas. Practices that provide the best
populations increase the likelihood of desired health care deliver the right care—based on evidence and
34 PART 1: DELIVERING PEDIATRIC HEALTH CARE

associated with the best outcomes—in a manner that is more appropriate purpose is to enable practices to
respectful of family needs and values, that wastes nei- provide appropriate, timely care for the child and the
ther resources nor time, that does not cause preventable child’s family, with the overall goal being to promote
harm, and that is delivered without bias and designed to better health outcomes for children, families, and
achieve equitable results across different patient popu- the community. Because practices need to stay organi-
lations. Timeliness of access is an attribute of the prac- zationally vital to provide this care, a reasonable ad-
tice’s delivery system; geographic and financial access ditional aim is to sustain the organization over the
are attributes of the larger health care finance and long term.
policy system rather than attributes of the practice What should a monitoring tool measure? Individual
system itself. practices or practice networks may choose different
Because of the nature of primary care, care must be measures, but an ongoing commitment to quality in-
designed to address the full spectrum of child health cludes monitoring across the full spectrum of care.
needs—preventive care, acute care, and the care of In the area of safety, practices can measure several
children with chronic or special health care needs. In dimensions. One critical aspect of safety in primary
most cases, care should also address community care is reporting and responding to critical test results.
needs, including both societal health needs (eg, high This can be assessed by identifying abnormal values
immunization rates) and the particular public health from laboratory results and tracking the proportion
concerns of the community served by a practice. This of patients with these results who were notified
latter emphasis is consistent with the pursuit of the appropriately or had appropriate follow-up actions
“Triple Aim”—simultaneously improving health, im- documented.
proving the experience of care (framed as the 6 IOM The measure of timeliness in primary care is in-
dimensions discussed previously) and reducing per creasingly standardized. The most widely used mea-
capita costs. The Triple Aim is the most recent refram- sure is the time to the third available appointment in a
ing of quality, initially developed by the Institute for practice (regardless of visit type). Another measure of
Healthcare Improvement and now incorporated into timeliness that assesses the performance of the broader
the US Federal National Quality Strategy. From this health system is the wait for a subspecialty appoint-
perspective, practices need to help address the ment (using the same third-available construct).
broader social needs of their patients, and must also Measuring the effectiveness of care should include
be aware of the impact of earlier life experiences on all 3 aspects of care—acute, chronic, and preventive.
long-term health and well-being. Acute care is a major component of pediatric pri-
The fundamental requirement for addressing all of mary care. Fewer firm measures of care exist in this
these issues in a practice is to view the primary care field. Among the most widely used measures of the
practice as a system or, in some cases, as one compo- quality of acute care is the appropriate use of antibiot-
nent of a larger system such as a medical group, hos- ics, a measure now widely in use through the Health-
pital network, or accountable care organization. When care Effectiveness Data and Information Set (HEDIS),
viewed as a system, the methods and tools of improv- a standard set of measures used to assess quality of
ing system performance can be applied to practices. managed care plans developed by the National Com-
mittee for Quality Assurance. This measure tracks the
Establishing Priorities rate of antibiotic prescriptions for children between
Given the breadth and scope of quality, as well as the 3 months and 18 years of age who were diagnosed
substantial gaps in performance across the spectrum with upper respiratory tract infections.
of quality dimensions, choosing where to begin is Numerous metrics are available to assess the effec-
daunting. One strategy to inform the choice of priori- tiveness of care for children with chronic conditions.
ties is the use of a monitoring tool such as a quality The most widely used metrics relate to care for chil-
compass, balanced scorecard, or family of measures. dren with asthma, the most common chronic medical
Although such dashboards or scorecards are often condition. These metrics include measures of care
viewed only in the context of corporate management, processes, such as whether severity is assessed or
the concept here is to develop a set of indicators that whether appropriate medications are prescribed, and
reflect practice performance across the 6 dimensions measures of patient outcomes, such as hospitalization,
of quality for a practice, as well as across other dimen- emergency department visits, and days without symp-
sions that practices already likely monitor, such as toms over a specified period. Measures also exist for
financial performance and staff satisfaction. Such a the care of children with attention-deficit/hyperactiv-
management tool can assist practice leadership in ity disorder (ADHD) that are broadly consistent with
setting priorities. Often, external organizations, such the guidelines of the American Academy of Pediatrics
as managed care plans, require measures in 1 or more (AAP). These measures include the use of criteria
of the quality dimensions, and national quality award established in the fifth edition of the Diagnostic and
programs, such as the Baldridge Award, look for such Statistical Manual of Mental Disorders (DSM-5) in
a systematic approach to priority setting and perfor- making the diagnosis and undertaking appropriate
mance monitoring. follow-up after the prescription of a stimulant or other
In choosing to develop and apply a monitoring tool, medication. Measures of symptoms and function can
practices should first consider their overall purpose in also be collected to provide a more comprehensive
establishing a measurement system. Although these assessment of care quality. More rigorous measures of
tools can be used to comply with insurance require- effectiveness combine, or bundle, multiple measures
ments and identify priorities for mandated projects, a into a single raise-the-bar indicator, requiring that all
CHAPTER 5 • Quality Improvement in Practice 35

appropriate processes be undertaken for a specific scorecard can be stratified by the different categories
patient (eg, assessing severity, using a written man- (examining, for example, whether rates of prescribing
agement plan, and prescribing appropriate medica- appropriate medication for patients with persistent
tion for a child with asthma). asthma vary by race or whether critical test follow-up
Because the needs and concerns of families with rates differ according to language).
children with special health care needs are quite simi- If practices identify improving community health as
lar regardless of the specific condition, broad mea- one of their aims, then tracking broader community-
sures assessing the degree to which practices fulfill based measures of health will also be appropriate, such
these needs are available. These measures assess, as rates of injury caused by intentional or unintentional
among other items, how well practices coordinate trauma and population-based indicators of obesity and
care and link families to available resources. Such diabetes. These data might lead to specific practice-
measures can be obtained from the “Children With based initiatives or might prompt more active engage-
Chronic Conditions” item set of the Consumer Assess- ment in advocacy and program development within
ment of Healthcare Providers and Systems (CAHPS) the broader community. Such data are often available
survey. These measures rely on the most appropriate through local and state health departments or may be
source of information—the parent or caretaker. found online at the state, county, or city level. See, for
Preventive care is the most commonly assessed as- example, County Health Rankings & Roadmaps (www.
pect of primary care for children. Typical measures of countyhealthrankings.org/rankings/data).
effectiveness of preventive services include immuniza- A comprehensive practice measurement set com-
tion rates, the performance of screening tests (eg, bines these clinical metrics with additional perfor-
developmental assessments), and the provision of an- mance metrics, such as financial performance and
ticipatory guidance consistent with recommendations. measures of staff satisfaction. Practice leaders devel-
The recent dramatic increase in childhood obesity has oping such scorecards for a single practice within a
led to specific emphasis on the quality of preventive larger system must also realize that maximizing per-
care related to this condition. These measures typically formance on a single unit is typically not the goal of an
include performing the body mass index percentile overall institution, so care must be taken to avoid
calculation, categorizing the obesity risk status, and policies that negatively affect performance elsewhere.
providing counseling about appropriate health For example, maximizing productivity in a practice by
behaviors. referring all complex patients to specialists may de-
A more sophisticated approach to assessing the crease access to those specialists for other practices.
quality of preventive services might entail assessing Primary care practices do not typically undertake
whether a patient-specific health risk assessment comprehensive monitoring and assessment. The bur-
was undertaken and whether appropriate follow-up den on an individual practice of compiling these mea-
assessments and plans were developed depending on sures regularly in the absence of an effective clinical
these risks. Parent-reported measures of preventive information system, such as an electronic health
care—particularly related to promoting appropriate record and effective practice registries, is substantial.
development—are also available (see Tools for Practice). On the other hand, the ability to generate such perfor-
Measures of efficiency in primary care pediatrics mance data and then use the data to manage and
are often monitored by practices themselves or by improve quality within a system is a clear advantage
third-party payers; these measures might include pro- of electronic health information systems and one of
vider productivity, use of high-cost pharmaceuticals many arguments for the potential benefit of such sys-
or radiologic tests, and hospitalization or emergency tems. Making such measures transparent (ie, sharing
department use. them publicly with staff, patients, and the community)
Patient and family centeredness can only truly be as- may also serve to deepen widespread engagement
sessed by patients and families themselves. The dimen- and generate ideas for improvement.
sions of these measures are typically included in patient Measurement does not result in improvement in
experience-of-care surveys and usually consist of quality; rather, it is necessary to identify opportunities
• Perceived access for improvement and for tracking progress towards a
• Courtesy and respect goal. For quality to improve, measurement must be
• Provision of information linked to purpose, better ideas for how to practice,
• Involvement in decision making and a process that reliably produces change and
• Care coordination enhanced results.
• The physical environment of the practice
• Overall assessment
These dimensions have been assessed on a widely
UNDERTAKING AN IMPROVEMENT
available plan-level measure, the CAHPS. A medical PROJECT
group and practice-level CAHPS for child health has Regardless of the priority chosen, the fundamental ap-
recently become available. proaches used in improving quality at the practice
The measurement of equity of care is relatively level are similar. The first step is chartering a team to
simple in concept, but has often been controversial in undertake improvement. In a small practice, the team
implementation. To assess equity, practices need a might consist of the entire practice—physician, nurse,
reliable indicator of membership in a particular group and manager. In a larger practice, improvement teams
(eg, racial group, income or insurance category, lan- typically include part of the practice, but must main-
guage spoken). Then, all the other measures in the tain ongoing communication with the rest of practice
36 PART 1: DELIVERING PEDIATRIC HEALTH CARE

so that improvements can subsequently spread. If the focused on effectiveness of care (giving evidence-
practice has a senior partner or some other form of based treatment for ADHD), the project will also nec-
formal leadership, then the leadership should develop essarily involve issues of safety (monitoring for side
the charge for the team. The team should be multidis- effects and complications), efficiency (use of mental
ciplinary and, in almost all cases, should involve health specialists), timeliness (wait times for assess-
patients and families as team members. ment and treatment), patient and family engagement,
and, given the current lower level of use of evidence-
Establishing Aims based treatments among black children who meet
criteria for this diagnosis, equity.
The first task of an improvement team is establishing
an aim, which may need to be refined by leadership
(See Figure 5-1). Aims for improvement programs Selecting Performance Measures
should be based on data and should be sufficiently The second step in an improvement program is estab-
bold to engage the energies of the project team. Simi- lishing measures to assess performance and track
lar to any research hypothesis, aims should be direc- gains. Measuring for improvement generally should
tional and specify magnitude. Aims should be closely focus only on the most important elements of the
aligned with the mission and vision of the organiza- work. Ideally, measures should be derived from data
tion and, whenever possible, reflect the priorities of collected routinely in the course of care, such as
patients and families. A hypothetical aim statement through an electronic health record or patient registry
might be, “Our project aim is to increase the function or through ongoing patient survey activity, but in
of children with ADHD cared for in our practice; we most cases this must be supplemented by project-
will do so by improving the care of children with specific data collection and analysis. Importantly, data
ADHD so that more than 95% receive perfect care, should be plotted and tracked over time using simple
without disparities”; in this case, perfect care is pre- tools, such as run charts, or more sophisticated tools,
cisely defined (eg, use of DSM-5 criteria for diagnosis, such as control charts, rather than aggregated for
development of shared goals, use of evidence-based evaluation-oriented before-and-after studies. A typi-
treatment, and follow-up consistent with AAP cal improvement project will include between 4 and 8
guidelines). This example clearly indicates the inter- measures, including measures of the processes of care
relatedness of the 6 quality aims. Although ostensibly (was the right thing done?), of the outcomes of
care (did the right result occur?), and of potential ad-
verse outcomes (balancing measures; did unintended
harm occur?). In the example, ADHD measures of
process would include whether information about
What are we trying
to accomplish?
child symptoms and function was collected from a
parent and 1 other source (eg, a teacher) and whether
DSM-5 criteria were used. Outcome measures might
How will we know include symptom scales and measures of function.
that a change is an Balancing measures might include patient satisfaction
improvement? and physician productivity.

What changes can Identifying Good Ideas


we make that will The third step for an improvement initiative is identi-
result in improvement? fying changes or innovations that are likely to lead to
accomplishing the desired aims. Ideas for such
changes can often be found in the medical literature,
with recognition that medical innovations often take
between 1 and 2 decades to enter widespread use
after being proved effective. Changes can also be
found outside of health care; safety innovations, for
example, are typically imported from high-reliability
Act Plan industries such as aviation, nuclear power, and high-
speed transport. Patients, families, and health care
staff are additional valuable sources of innovation.
Generic change concepts from industry are another
Study Do useful source of innovation that can be customized to
the health care setting.

Example of a Good Idea: Care Model for


Child Health in a Medical Home
Figure 5-1 Model for Improvement. (From Langley GL,
An idea that is widely applicable to improving the
Moen R, Nolan KM, Nolan TW, Norman CL, Provost LP. The
quality of primary care—particularly preventive care
Improvement Guide: A Practical Approach to Enhancing
Organizational Performance. 2nd ed. San Francisco, CA:
and the care of children with special health care
Jossey-Bass Publishers; 2009. Reprinted with permission.) needs—is the care model for child health in a medical
home, a modest modification of the chronic care model
CHAPTER 5 • Quality Improvement in Practice 37

developed by Wagner and colleagues (Figure 5-2). The Two aspects of the design of the delivery system
care model asserts that primary care is best delivered merit particular attention. Interactions among physi-
not by an individual provider, but rather by a health cians, other health care providers, patients, and
care team, and that the team will best serve the patient families should be designed to address issues of im-
if it can anticipate patient needs and act accordingly. portance to patients and their families and to antici-
The team can function most effectively when support- pate future needs. The most effective settings for such
ive clinical information, decision support, care deliv- interactions are planned visits. Planned visits are rou-
ery, and self-management support systems are in place tine in preventive care (well-child visits) but are less
within a practice or clinic and when larger organiza- common—although essential—in the care of children
tional systems are also aligned in support of the overall with special health care needs. Because of the frag-
approach. The care model further asserts that patients mentation of services for children, the care model
must participate in their own care as members of the for child health also emphasizes care coordination. A
care team. To accomplish this task, patients need suf- designated office staff member may provide care
ficient knowledge, skills, and abilities to monitor and coordination, or care coordination functions may be
manage their well-being. For younger children, a par- distributed in clearly defined ways among several in-
ent or caregiver often serves as the patient’s voice and dividuals. Finally, because children are ethnically and
agent. The care model advises that health care prac- culturally diverse, capturing ethnic information in
tices and systems draw on community resources to patient registries is important to ensure that practices
help patients achieve better outcomes. can examine their care and outcomes by patient sub-
Practices with appropriate clinical information sys- groups. Trained interpreters in the care partnership
tems are able to list which of their patients have spe- enable appropriate goal setting and care planning.
cific clinical conditions (eg, asthma), the severity or Chronic care must be based on evidence when evi-
complexity of these conditions (eg, severe persistent dence is available and on expert guidance when
asthma), and other bits of information relevant to the evidence is not available or needs interpretation. Bas-
patient management question at hand (eg, are all eli- ing care on evidence requires mechanisms for deter-
gible children with asthma using the proper dose of mining what type and degree of evidence is required
anti-inflammatory medication?). Information systems to drive change, for obtaining and reviewing evidence-
can also indicate which patients have received specific based recommendations, for sharing such information
preventive services (eg, immunization, screenings, with patients and families, for entering the evidence in
and assessment of healthy weight) and provide medical record systems so that faulty memory does
reminders when they are due. not impede care, and for maintaining ready access to
subspecialty expertise.
The most critical component of the care model is
providing care in a way that promotes patients’ ability
to provide self-care and manage their own care. This
framing acknowledges that pediatricians and other
health care professionals are facilitators and that the
Health System actions of patients are the final determinants of out-
Community Health Care Organization (Medical Home)
Resources Care Delivery Decision Clinical
comes. The core aspect of self-management support is
and Policies Partnership System Support Information the development of shared goals between patients and
Support Design Systems
physicians and the subsequent development of spe-
cific, mutually agreed-on plans to achieve these goals.
Because care for children includes supporting both
Supportive, Informed, Prepared,
the family’s ability to provide care and the child’s abil-
Integrated Activated Proactive ity to assume self-care, practices should provide both
Community Patient/Family Practice Team self-management support (supporting the ability of
the child to manage their own health and health care)
Family Timely Evidence-based Coordinated and family-management support (that is, promoting
Centered and Efficient and Safe and Equitable
the ability of the family to manage that care). For
Functional and Clinical Outcomes example, children with diabetes or asthma need to
take increasing responsibility for monitoring their
Figure 5-2 The care model for child health in a medical own condition and for adjusting their medical regi-
home. This diagram indicates the desired outcomes of men as they approach adolescence. The medical home,
excellent care for children; the shared contribution of the where the care model is implemented, needs to sup-
health care system and community resources to improved port the child’s increasing competence in managing
results; the key role of organizational policies and her well-being and to counsel and support the family
leadership; and the four specific elements of an effective in monitoring the success of that effort while also
medical home—information system, decision support, maintaining the child’s safety.
delivery system design, and care partnership support. The care model highlights 2 additional areas critical
(From Homer CJ, Cooley WC. Creating a medical home for
to providing preventive care and care that meets the
children with special health care needs. In: Sobo EJ, Kurtin
needs of persons with chronic conditions. The first
PS, eds. Optimizing Care for Young Children with Special
area is alignment of health care provider activities
Health Care Needs. Baltimore, MD: Paul H. Brookes; 2007,
with permission.)
with organizational aims. The second is that practices
must draw on the resources of the larger community
38 PART 1: DELIVERING PEDIATRIC HEALTH CARE

to meet patient needs. This includes obtaining access learning collaboratives conducted by the National In-
to not only formal supports and entitlements such as stitute for Children’s Health Quality and other organi-
housing services or special education, but also infor- zations can also serve this function. Many regional
mal supports provided by resources such as churches improvement programs have also been established,
and libraries. often involving state professional association chapters
Although not simple, the care model for child health working together with public health officials, aca-
is a powerful framework for the organization (and demic institutions, and public and private health in-
reorganization) of pediatric primary care. Combined surance agencies. Participation in such external efforts
with evidence-based guidelines as well as an effective typically accelerates learning and improvement and
strategy to undertake small changes that will ulti- facilitates the pediatricians’ efforts in quality improve-
mately effect large changes in practice systems, it ment, which are often difficult to accomplish without
results in better care for children and families. This external resources.
model provides the detail that is needed to make the
medical home concept a reality. SUMMARY
Widespread deficiencies abound in health care across
Implementing Change
all 6 dimensions of quality (safety, timeliness, effective-
In primary care practices, fully implementing a new
ness, efficiency, equity, and patient centeredness). A
approach, such as the care model described previ-
systematic approach to monitoring quality can help
ously, in a way that anticipates all the challenges that
set priorities for improvement, although the specific
such change will bring is not typically possible. A more
topics and initiatives to be undertaken must also be
effective approach to introducing change is through
customized to the specific institutional environment.
the use of repeated small tests of change, sometimes
Use of a quality improvement approach such as the
referred to as the Shewhart cycle after the industrial
Model for Improvement increases the likelihood of
engineer who first developed the approach, or more
making positive changes in care and outcomes. The
commonly, the plan-do-study-act (PDSA) cycle.
care model for child health is one powerful idea that
The PDSA cycle starts with the question, “What is
can be used to organize and improve the quality of
the largest meaningful test of change that we can con-
primary care practices, particularly when combined
duct by next Tuesday?” The priority for a PDSA cycle
with evidence-based recommendations such as Bright
is to expeditiously try something out (do) in a way that
Futures. Collaboration across organizations can accel-
is planned and that allows learning (study) and revi-
erate improvement efforts as well.
sion (act). A typical health care PDSA cycle involves
the care of one patient at one point in time by one
health care provider, such as the use of a new dehy- TOOLS FOR PRACTICE
dration assessment form or patient instruction dia- Community Advocacy and Coordination
gram. A full cycle involves planning what will be done • Be Our Voice: Obesity Prevention Advocacy Training
(including the questions of who, what, where, and (online course), National Institute for Children’s Health
when, if not why), performing the test, reflecting on Quality (obesity.nichq.org/resources/obesity%20
what happened during the test, and modifying the test prevention%20advocacy%20training)
for the next cycle. Effective improvement programs • Bright Futures, Theme 10: Promoting Community
conduct numerous cycles, building one on the other Resources and Relationships (guidelines), American
and addressing different dimensions of the care sys- Academy of Pediatrics (brightfutures.aap.org/
tem with different series of tests. Bright%20Futures%20Documents/11-Promoting_
This approach to improvement—the combination of Community_Relationships.pdf)
aims, measures, changes, and the PDSA cycle—is • Community Toolbox (Web site), Work Group for
known as the Model for Improvement. Developed by Community Health and Development, University of
Associates in Process Improvement, the Model for Kansas (ctb.ku.edu/en)
Improvement is among the most widespread improve- • Tools and Resources (Web page), National Center for
ment frameworks in health care. Different approaches Medical Home Implementation (medicalhomeinfo.
use different terminology and have somewhat differ- aap.org/tools-resources/Pages/default.aspx)
ent emphases but in general they share the use of
aims, measures, and repeated tests of change. Practice Management and Care Coordination
• Care Coordination Task Force Key Elements Frame-
COLLABORATIVE LEARNING work (report), Massachusetts Child Health Quality
Sharing data allows individual organizations both to Coalition (www.masschildhealthquality.org/wp-content/
set priorities better and to identify practice settings uploads/2014/06/care-coordination-framework.pdf)
that have better performance for learning (also known • Child Clinician and Group CAHPS Survey (Web
as benchmarking). The benefits of collaborative learn- page), Agency for Healthcare Research and Quality
ing have formed the basis for numerous collaborative (cahps.ahrq.gov/Surveys-Guidance/CG/index.html)
improvement programs in children’s health care. • Creating a Patient and Family Advisory Council: A
Many networks initially established for clinical and Toolkit for Pediatric Practices (booklet), National In-
health services research, including the AAP Pediatric stitute for Children’s Health Quality (medicalhome.
Research in Office Settings and the Continuity nichq.org/resources/pfac-toolkit)
Research Network for academic primary care, have • For Practices: Getting Started (Web page), National
the potential to serve this purpose. Topic-specific Center for Medical Home Implementation (medical
CHAPTER 6 • Medical Home Collaborative Care 39

homeinfo.aap.org/tools-resources/Pages/For- of specialists as well as other health and non-health


Practices.aspx) community resources. Well children may also re-
• Medical Home Change Package, National Institute quire referral to specialists for troubling signs or
for Children’s Health Quality (medicalhome.nichq. symptoms of disease or when screening in the medi-
org/resources/medical%20home%20change%20 cal home raises suspicion of a problem. Health main-
package) tenance for all children suggests a broad population
• Putting Theory Into Practice: A Practical Guide to approach. Depending on the risk patterns of chil-
Medical Home Transformation Resources (Web dren in a practice’s population, this approach may
page), Patient-Centered Primary Care Collaborative require communication with and linkage to public
(www.pcpcc.org/guide/putting-theory-practice) health resources. All of these interactions involve
collaboration both within and beyond the walls of
the medical home.
AAP POLICY
American Academy of Pediatrics Council on Community FIVE LEVELS OF COLLABORATION
Pediatrics. Community pediatrics: navigating the The primary care family-centered medical home
intersection of medicine, public health, and social occupies a crucial intersection within the community-
determinants of children’s health. Pediatrics. 2013; based system of supports and services on which fami-
131(3):623–628 (pediatrics.aappublications.org/content/
lies, children, and youth depend (Figure 6-1). The
131/3/623)
American Academy of Pediatrics Council on Children With medical home is positioned to collaborate and coordi-
Disabilities. Care coordination in the medical home: nate care vertically within the health care system as
integrating health and related systems of care for well as horizontally among community-based organi-
children with special health care needs. Pediatrics. zations. As a result, much depends on a proactive
2005;116(5):1238–1244 (pediatrics.aappublications.org/ approach to collaborative care. To realize a fully inte-
content/116/5/1238) grated, family-centered, community-based system of
American Academy of Pediatrics Steering Committee on care and services, collaborative care must manifest it-
Quality Improvement and Management. Toward self in 5 domains. First, and central to the provision of
transparent clinical policies. Pediatrics. 2008;121(3):
family-centered care (see Chapter 9, Partnering With
643–646. Reaffirmed February 2014 (pediatrics.
aappublications.org/content/121/3/643)
Families in Hospital and Community Settings), pedia-
tricians and other providers of pediatric care promote
a true partnership with families. This is the relation-
ship around which all other collaborations revolve.
SUGGESTED READINGS
Second, the staff of the primary care medical home
AAP Professional Resources on Practice Support: Quality
functions as a team with explicit roles for all members
Improvement (www.aap.org/en-us/professional-
resources/practice-support/quality-improvement/
aimed at providing the most effective, efficient care
Pages/Quality-Improvement.aspx) and the best possible experience for families. Third,
Center for Medical Home Improvement (www. the primary care medical home team collaborates with
medicalhomeimprovement.org) specialists around initial consultations and ongoing
National Institute for Children’s Healthcare Quality (www. chronic condition care to ensure seamless comanage-
nichq.org) ment and clarity about diagnostic impressions and
The Institute for Healthcare Improvement (www.ihi.org) treatment plans. Fourth, the medical home team needs
to work with insurers (private and public) and ac-
countable care organizations to ensure appropriate

Chapter 6 The Primary Care Medical Home


Coordinates Care…
MEDICAL HOME
COLLABORATIVE CARE Vertically – within the health care system

Jeanne W. McAllister, BSN, MS, MHA; W. Carl Cooley, MD Horizontally – among community agencies

Longitudinally – with continuity over time

BACKGROUND
Health Care
The complexity of health maintenance, acute illness
care, and chronic condition management no longer
permits the simple model of a single practitioner
meeting all of the health care needs of every child in
every family. The primary care family-centered med- Continuity…
ical home requires an organized team of providers Community Medical Longitudinally…
and staff working together to ensure the safest, most Supports Home
effective, and most efficient delivery of care. At least
15% of children have 1 or more special health care
Figure 6-1 Medical home responsibilities.
needs, and their care often requires the involvement
40 PART 1: DELIVERING PEDIATRIC HEALTH CARE

access to and payment for their patients’ care. extent, everyone’s role was to support individual office
Finally, the primary care medical home collaborates encounters between patients and their families and
with other community-based organizations such as the primary care physician. Surveys of families de-
schools, early intervention programs, mental health scribed high levels of satisfaction with their primary
agencies, home health agencies, and family support care physicians. However, as the health care system
organizations to ensure that a child’s health care and the health care needs of children and youth have
needs are fully understood and considered in the con- become more complex, the traditional model of care
text of the whole range of community services that proved to be less efficient, effective, and accessible,
impact the child and family. and even less safe than it needed to be.
In the past 20 years, new members of the typical
Family-Centered Care: Collaboration With pediatric office staff have materialized, including
Patients and Families nonphysician providers such as advanced practice
registered nurses (nurse practitioners), child health
Family-centered care was defined by an expert panel
associates, and physician assistants and medical
of health care professionals, family leaders, and ma-
assistants to handle patient flow in the office. Some
ternal and child health policy makers in the following
primary care practices have added the role of a care
manner:
coordinator who may work with families, particularly
Family-Centered Care assures the health and well those with children with special health care needs, to
being of children and their families through a respectful
ensure timely planning, access, and follow-through
family-professional partnership. It honors the strengths,
cultures, traditions and expertise that everyone brings
with needed services. More importantly, the delivery
to this relationship. Family-Centered Care is the stan- of care in a primary care medical home has required
dard of practice, which results in high quality services. that office staff members collaborate in more defined
ways as care delivery teams. The growth of team-
A growing evidence base demonstrates improved
based care has paralleled the adoption and spread of
outcomes for children and families receiving family-
the medical home model as a means of ensuring com-
centered care. In particular, studies have demon-
prehensive, coordinated, easily accessible care. In the
strated lower hospitalization rates, reduced rates of
medical home, the pediatrician leads a team that is
unmet needs, and increased use of community ser-
concerned not only about caring for individual
vices. Furthermore, family-centered care has been
patients, but also about promoting the overall health
associated with improved physical and mental health
of the population it serves. The members of such a
and fewer missed school days for children with
team have specific roles to play that are clearly articu-
chronic conditions. Families receiving family-centered
lated and understood by everyone and that ensure
care are more satisfied with care to which they have
that each team member functions at the top of their
easier access and about which they have better com-
training, expertise, and licensure. The expectation for
munication.
expanded access to the primary care medical home
Family-centered care has evolved over the past
with evening, weekend, and holiday office hours, as
30 years to become integral to all pediatric health care
well as interactive Web sites and patient portals, re-
whether in the hospital, the outpatient department,
quires that teams can cross-cover for one another and
the emergency department, or the primary care medi-
still retain knowledge of a panel of patients. As more
cal home. It is grounded in the understanding that the
of the pediatric workforce serves in part-time posi-
family, however it may be configured, is the constant
tions, team-based care in the medical home provides
in the child’s life and crucial to health, development,
necessary continuity while also providing enhanced
and general well-being. In the provision of all aspects
access to care. Such expanded access with continuity
of primary care (preventive, acute, and chronic),
of care has demonstrated cost savings in emergency
the medical home team must regard the family as a
department utilization and admissions.
full partner in the health care of each child with a
A large pediatric primary care medical home may
shared stake in both decision making and outcomes.
include several teams delivering care to a specific
Chapter 9, Partnering With Families in Hospital and
panel of patients. This team might include a lead
Community Settings, addresses family-centered care
pediatrician, 2 or 3 nonphysician providers, several
in more depth.
medical assistants, and a care coordinator. This pri-
mary care team would meet each morning in a brief
Team-Based Care: Collaboration Within the “huddle” to examine the list of patients scheduled for
Medical Home the day, determine if there are any special or unantici-
In the late 20th century, the pediatric primary care of- pated needs, and identify who may need help with
fice consisted of individual physician providers of care care coordination or, among patients of the nonphysi-
supported by a variety of staff members, depending cian providers, who will require physician consulta-
on the size of the practice. The staff might have in- tion. Such meetings have been shown to improve pa-
cluded a receptionist at the front desk, a nurse or tient flow, reduce waiting times, and reduce the risk of
medical assistant to escort patients to examination overlooking a problem. In the course of a busy day,
rooms and assist the physician with procedures, and the care coordinator will make contact with specialty
someone to handle billing and financial matters. clinics, hospitals, schools, and community agencies on
Larger practices might have more physicians, an of- behalf of patients with special or complex needs, free-
fice manager, a medical records manager, and addi- ing the direct care providers (physician and nonphysi-
tional front desk staff and nurses. However, to a large cian) to see patients with fewer interruptions.
CHAPTER 6 • Medical Home Collaborative Care 41

The medical home team not only needs to perform coordinated comanagement in which the role of the
as a collaborative team, but also shares a responsibility specialist and that of the primary care medical home
for the quality and cost of the care it delivers. In a team are clearly defined and reliably communicated in
medical home, teams may create and receive reports a bidirectional manner. Such planned comanagement
about the clinical outcomes they are achieving, about ensures that the specialist makes critical care decisions
the satisfaction of the patients and families they serve, while the primary care medical home has clear infor-
and about costs of care incurred by those patients and mation about the treatment plan, a role in monitoring
families. Armed with such data, the medical home the patient’s status, and the ability to triage new symp-
team also functions as a quality improvement team as toms or problems. Some chronic conditions may stabi-
it reflects upon its performance and then discusses, lize enough to allow for an expanded primary care role
tests, and evaluates ways to improve the care that is in management with a reduction in specialty care
delivered. Wherever possible, this process of continu- involvement over time, and other conditions may fluc-
ous improvement solicits the input and suggestions of tuate between periods of routine management and
patients and families as consumers of medical home periods of high specialty-care needs.
services. Further discussion of quality improvement Effective collaboration between the primary care
in the medical home can be found in Chapter 7, medical home and specialists involves planning
Planned Coordinated Care to Support the Medical and communication. The electronic medical record—
Home. particularly with electronically interoperable inter-
faces with specialists, imaging, and laboratories—
Comanagement of Chronic Conditions: helps facilitate the necessary explicit, bidirectional
Collaboration With Specialists communication for comanagement of children with
Pediatric specialists provide critical, often lifesaving chronic or complex conditions. The collaborative care
evaluation and care for children and youth with roles of subspecialists and primary care pediatricians
chronic conditions and can be an important source of must be planned, explicitly defined, and understood by
decision-making support for primary care pediatri- all involved. That planning manifests itself in a written
cians and other professionals. Patients with suspicious care plan. Ideally, the care plan becomes the instru-
symptoms or screening results are referred to special- ment of communication as it is shared among the
ists for diagnostic confirmation, and those found to specialists, the primary care medical home, and the
have chronic conditions may require ongoing man- patient or family. These 3 could be regarded as the core
agement from specialists. The presence of a chronic collaborative care team, because each of them must
health condition requiring specialty care poses the risk understand and accept his or her role in the coman-
of care being fragmented into the chronic condition agement process. To do so, each must work from the
management provided by specialists and the routine same proposed care plan. This is often best addressed
preventive and minor acute illness management by using a patient portal that is available to primiary
provided by the primary care pediatrician. With the care pediatricians, subspecialists, and patients’ fami-
advent of the medical home model, the role of the pri- lies alike.
mary care team in the management and coordination In some situations, particularly within large inte-
of care of chronic conditions has become better de- grated systems of care, the relationship between cer-
fined and valued. An ample body of evidence supports tain specialists or specialty groups and primary care
better outcomes for children with chronic conditions pediatricians for relatively common conditions and/or
who receive care in a medical home. Clear communi- situations may have clearly articulated parameters
cation between the primary care pediatrician and and expectations that apply to all shared patients and
specialist is essential to ensure that they both under- clinical situations. Such comanagement or service
stand what roles they will be playing in caring for the agreements spell out the expected actions of the pri-
patient. mary care team alongside the expected availability
On the other hand, beyond a few conditions like and actions of specialists. For example, for children
asthma and attention-deficit/hyperactivity disorder with seizures, the neurologists may agree to see new
(ADHD), many chronic conditions affecting children patients for evaluation in a timely manner and com-
are uncommon, and a growing number of children municate their findings and plans rapidly, and the
have combinations of conditions that complicate their primary care team may agree to provide some of the
care. Specialists in the diagnosis and management of seizure follow-up, obtain anticonvulsant blood levels,
these conditions may believe that only they are and share the findings with the neurologist. By shar-
equipped with the knowledge, experience, and tech- ing some of the follow-up management with the pri-
nological resources needed to produce the best mary care team, the neurologist will have better access
results. Some specialists may regard primary care for new patients on her schedule.
physicians as too uncomfortable, too ill-informed, or In some situations, the specialists may have a team
even too disinterested to participate in the manage- that is very capable of providing comprehensive care
ment of rare or complex conditions. However, the to patients with chronic illnesses, thereby functioning
primary care medical home is the only entity in the as a medical home for those patients. This can be an
health care system that is positioned to both commu- appropriate alternative model to the primary care
nicate and coordinate within the system (eg, with medical home as long as there is clear communication
specialists) and with community-based organizations about the roles of the specialist teams and the primary
that may be important for a child with a complex, care medical home so that there is no confusion
chronic condition. The key is a process of explicit, regarding who provides the various aspects of care.
42 PART 1: DELIVERING PEDIATRIC HEALTH CARE

Community Outreach: Collaboration With others involved in the common endeavor of good
Community-Based Organizations health, including the patient, the family, colleagues
Children and their families are high utilizers of in the medical home, specialists, and local commu-
community-based services. Child care, preschool ser- nity service professionals.
vices, early intervention programs for infants and
toddlers, public and private schools, and community TOOLS FOR PRACTICE
mental health services provide supports to children
and families. In many instances, particularly in settings Engaging Patient and Family
like child care and school where children spend many • Building Your Care Notebook (Web page), American
hours each day, important health issues arise fre- Academy of Pediatrics (medicalhomeinfo.aap.org/
quently and collaboration is important. Children with tools-resources/Pages/For-Families.aspx)
chronic conditions like asthma, diabetes, and ADHD • Emergency Information Form for Children with
may require the administration of medication at school, Special Needs (template), American Academy of
and school health officials will need up-to-date infor- Pediatrics (www.aap.org/advocacy/blankform.pdf)
mation about overall management. Children affected • Hospital Stay Tracking Forms (file archive), National
by rare conditions may manifest symptoms at school Center for Medical Home Implementation (medical
that need accurate assessment, and children with some homeinfo.aap.org/tools-resources/Documents/
complex health care needs may receive enteral feed- Hospital%20Stay%20Tracking%20Forms.zip)
ings or require respiratory care while at school. Early • Medical Summary Part I (handout), American Acad-
intervention programs conduct ongoing assess- emy of Pediatrics (medicalhomes.aap.org/Documents/
ments of developmental progress in children with PediatricCarePlan.pdf)
developmental delays that should be integrated with • Pediatric Specialists (Web page), American Acad-
medical information in those children’s health records. emy of Pediatrics (www.healthychildren.org/
The work culture in a busy primary care office practice English/family-life/health-management/pediatric-
is different than that of an elementary school, often specialists/Pages/default.aspx)
making direct communication difficult. However, a care • Positioning the Family and Patient at the Center: A
coordinator serving as a member of the primary Guide to Family and Patient Partnerships in the
care medical home team may communicate regularly Medical Home (monograph), National Center for
with counterparts in various community-based organi- Medical Home Implementation (medicalhomeinfo.
zations, creating a better flow of information and aap.org/tools-resources/Documents/Positioning_
establishing a more personal relationship between the FINAL_May24.pdf)
medical home and the community agencies.
Practice Management and Care Coordination
Because the medical home can be regarded as pro-
• APEX Digital Navigator (practice transformation
viding an interface between personal, individual
tool), American Academy of Pediatrics (www.aap.
health and public health in the community, the medical
org/en-us/professional-resources/practice-support/
home team will also need to collaborate with public
APEX/Pages/Digital-Navigator.aspx)
health agencies and officials. From the reporting of
• Family-Centered Care Self-Assessment Tool (self-
communicable diseases to immunization registries to
assessment), Family Voices (www.familyvoices.org/
the follow-up of newborn screening tests, the effective
admin/work_family_centered/files/fcca_FamilyTool.
and timely exchange of information can be critical.
pdf)
State Title V programs are responsible for ensuring
• Measuring Medical Homes: Tools to Evaluate the
access to appropriate care and treatment for all chil-
Pediatric Patient- and Family-Centered Medical
dren with special health care needs and often have
Home (monograph), National Center for Medical
information and personnel to assist the primary care
Home Implementation (medicalhomeinfo.aap.org/
medical home in serving this population. An active,
tools-resources/Documents/Monograph_FINAL_
collaborative relationship with Title V agencies can
Sept2010.pdf)
help connect patients and families with resources that
they need.
AAP POLICY
American Academy of Pediatrics Committee on Community
COLLABORATIVE CARE AND THE Health Services. The pediatrician’s role in community
pediatrics. Pediatrics. 2005;115(4):1092–1094. Reaffirmed
CULTURE OF THE MEDICAL HOME January 2010 (pediatrics.aappublications.org/content/
The medical home model has helped operationalize 115/4/1092)
new primary care functions or improve existing American Academy of Pediatrics Committee on Children
ones such as family-centered care, care coordina- With Disabilities. Care coordination in the medical
tion, access, and population-based care. However, home: integrating health and related systems of care
the medical home transformation of primary care for children with special health care needs. Pediatrics.
has also brought new cultural values that underlie 2005;116(5):1238–1244 (pediatrics.aappublications.org/
content/116/5/1238)
all of the structures and processes of care. Chief
American Academy of Pediatrics Medical Home Initiative
among those new values is the commitment to for Children With Special Needs Project Advisory
quality and to continuous improvement, but a col- Committee. The medical home. Pediatrics. 2002;
laborative approach to care ranks as another impor- 113(5):1545–1547. Reaffirmed May 2008 (pediatrics.
tant value. Intrinsic to collaboration is a respect for aappublications.org/content/110/1/184)
CHAPTER 7 • Planned Coordinated Care to Support the Medical Home 43

American Academy of Pediatrics Council on Children With TEAM-BASED CARE COORDINATION


Disabilities and Medical Home Implementation Project
Advisory Committee. Patient- and family-centered care Bodenheimer defines a team as “a group with a spe-
coordination: a framework for integrating care for cific task or tasks, the accomplishment of which re-
children and youth across multiple systems. Pediatrics. quires the interdependent and collaborative efforts of
2014;133(5):e1451–e1460 (pediatrics.aappublications.org/ its members.” Effective teamwork is also described
content/133/5/e1451) in terms of relational coordination, which requires
shared goals, shared knowledge, problem solving, and
frequent and timely communication, salted with mu-
SUGGESTED READINGS
tual respect—blending the management of people and
Cheng TL. Primary care pediatrics: 2004 and beyond. of their care tasks.
Pediatrics. 2004;113(7):1802–1809
Fisher E. Building a medical neighborhood for the medical
home. N Engl J Med. 2008;359(12):1202–1205 THE COORDINATION OF CARE
Forrest CB, Glade GB, Baker AE, Bocian A, von Schrader S, A key care process in the medical home is the provision
Starfield B. Coordination of specialty referrals and of care coordination; often all or most team members
physician satisfaction with referral care. Arch Pediatr provide some coordination functions. Care coordination
Adolesc Med. 2000;154(5):499–506 is defined as a patient- and family-centered, assessment-
Homer CJ, Cooley WC, Strickland BB. Medical home 2009: driven, continuous, team-based activity designed to
what it is, where we were, and where we are today.
meet the bio-psychosocial needs of children and youth
Pediatr Ann. 2009;38(9):483–490
while enhancing personal and family caregiving skills
and capabilities. Care coordination in the medical
home provides for communication linkages with people
within other health and community agencies. To be ef-
Chapter 7 fective, care coordination functions should be central-
ized and implemented in a partnership with the patient
PLANNED COORDINATED CARE and his or her family. A key result of team-based care
TO SUPPORT THE MEDICAL coordination is a family supported in their own pri-
mary caregiving and coordinating role, and children
HOME and youth who are appropriately prepared to gain re-
Jeanne W. McAllister, BSN, MS, MHA; W. Carl Cooley, MD sponsibility and confidence caring for themselves. Reli-
able, explicit, and systematic processes are needed to
ensure timely, optimal, and consensual exchange of
BACKGROUND relevant information.
A family-centered pediatric medical home provides
proactive, planned, coordinated care. This is very INTEGRATION OF CARE
much like the patient-centered medical home, but with Practice-based care coordination also emphasizes
a greater emphasis on the whole family. Primary care communication with nonmedical professionals at
practices that achieve this standard are able to make 4 schools and within community agencies in order to
key claims: first, they can demonstrate how they enter advocate for children and families and establish
into partnerships with families and work together to shared care or service goals. There is a strong need
help families meet the needs of their children; second, for care continuity and for the integration of primary
the practice has chosen a model of family-centered, care efforts with other services and supports that chil-
team-based care coordination; third, this model is ex- dren and families use. This is particularly true when
pressly shared with families and delivered through a circumstances include pediatric conditions requiring
partnership that is jointly and continuously evaluated the input of multiple specialized physicians and thera-
for improvement; and finally, the physicians and their pists. The pediatric primary care medical home is ide-
teams find this partnership professionally gratifying. ally suited to centralize care and integrate the input of
Chapter 9, Partnering With Families in Hospital other physicians and professionals across the care
and Community Settings and Chapter 10, Family- and community continua (eg, home/school, clinic,
centered Care of Hospitalized Children address col- hospital). Coordinating care and facilitating communi-
laboration across the continuum of health and com- cation in this way is often referred to as “the warm
munity care. The purpose of this chapter is to define handshake” of the medical home. Box 7-1 provides an
and describe care coordination in the medical home— example.
its characteristics, processes, tools, and core func- Care coordination in a highly functioning pediatric
tions. Care coordination is needed because fragmen- medical home meets the following criteria:
tation continues to plague our health care delivery 1. Patient and family centered
systems. The medical home, family partnerships, and 2. Community based
coordinated care are true counterparts; one cannot 3. Proactive with planned, comprehensive care
exist without the others. Highly functioning health 4. Promotes the development of self-management
care teams provide reliable and flexible options for skills among children, youth, and their families
full access to the medical home. Care in this environ- 5. Facilitates cross-organizational linkages, relation-
ment uses proactive, planned, coordinated approaches, ships, and multidirectional communication (including
and does so with the help of family-centered, team- medical specialists and consultants and nonmedical
based care. providers such as schools and community agencies).
44 PART 1: DELIVERING PEDIATRIC HEALTH CARE

family benefits from linkages to needed services and re-


sources. Children and families with temporary or long-
BOX 7-1 Case Example standing psychosocial concerns may also need help with
the coordination of relevant care and services. Care co-
Whitney is a 15-year-old who on her best days dreams of
ordination may be a short, time-limited process or part
getting her driver’s license. She has longstanding uncon-
trolled type 1 diabetes. Compounding social factors con-
of a long-term continuous care relationship, or some-
tribute to her school absences and even to truancy charges. where in between. An outcome of care coordination is
In the 6 months prior to her switch to a new medical home an increasingly empowered family that knows where to
with care coordination, Whitney had 9 emergency room look for assistance when needed. This means a primary
visits and 7 hospitalizations resulting from ketoacidosis. care medical home must offer a clear message about all
available care coordination supports.
CARE COORDINATION OVERALL AIMS The medical home team (with senior leadership, if
• Effective management of type 1 diabetes appropriate), should decide whether care coordina-
• Improved communication, collaboration, and coordina- tion will be available for every patient in the practice
tion among teen, family, physicians, and school team or delivered in some defined manner based on need.
SHARED PLAN OF CARE GOALS The team may target a specific patient population for
available care coordination services. For example,
• Transition to insulin pump (pending her diabetes control) they may decide that services will be directed towards
• Obtain driver’s license a population of children/youth with special health care
• Improve school performance needs (CYSHCN). Such children have, or are at in-
SHARED PLAN OF CARE—NEGOTIATED ACTIONS creased risk for, chronic physical, developmental, be-
(PERIOD OF 10 MONTHS) havioral, or emotional conditions that require health
• Enroll in a quality medical home
and related services of a type or an amount beyond
that required by children generally. The team may de-
• Engage with care coordinator
termine levels of care coordination service based upon
• Support teen and family care complexity. Care complexity will vary with
• Hold/attend care conferences changes in a child’s condition and over time. The Child
• Update and detail the goal-related strategies within and Adolescent Health Measurement Initiative offers
the shared plan of care a screening tool readily available to every medical
• Align partners home at no cost to help with the identification of the
• Develop an emergency plan population of CYSHCN in each practice. Care coordi-
• Increase contact, communication, and collaboration nation has been shown to meet child and family needs
with medical home and school and to have a positive effect upon health and cost
• Overcome (persistent) communication and outcomes.
transportation barriers to counseling Care coordination is meant by design to foster a
• Work with diabetes educator 2 times per month strong relationship between families and the medical
• Work with dietitian 2 times per month home and to link families to needed services and re-
sources. Beginning with an identified population, the
RESULTS team can either reach out to targeted families or iden-
• Access to a high-quality medical home with care tify patients and families prospectively at the time of
coordination an office visit. These patients are typically enrolled in
• Use of the strategies and approaches within the a registry (spreadsheet, database, or electronic tool)
shared plan of care that stores health information in a way that supports
• Multiple collaborative contacts with medical home proactive, planned, and coordinated care. A registry
“neighborhood” or collaborating partners should include critical items for tracking and monitor-
• Counseling in place ing patients along with items necessary to help dem-
onstrate best available known pediatric practice (eg,
UTILIZATION
annual flu vaccine reminders) for purposes of program
Ten months after onset of care coordination with a plan evaluation. Once a population is identified and enrolled
of care, Whitney had 2 emergency department visits, no in a registry it may be useful to stratify this grouping
hospitalizations, improved A1C test results, and im- by applying a complexity score or sorting by level of
proved school attendance. Her insulin pump is pending. concern. (To learn more, go to www.medicalhomeinfo
.org to access the Building Your Medical Home Tool-
kit.) Organizing patients by levels helps the team to
prioritize patient and family needs and apply limited
WHO NEEDS CARE COORDINATION? care coordination resources in the most efficient and
A variety of patient and family needs and circumstances effective manner.
warrant strong care coordination. Examples include a
child who has recently been diagnosed with a chronic
condition, a family navigating the multiple agencies in-
PROVISION OF CARE COORDINATION:
volved in the care of their child, a child who requires STRUCTURES AND PROCESSES
multiple interventions or hospitalizations that may inter- When asked what they need to help them care for
fere with his or her school attendance or daily activities, their children, families often request a team approach
and a child in foster or kinship care. Each child and to care along with help coordinating efforts across
CHAPTER 7 • Planned Coordinated Care to Support the Medical Home 45

multiple services and settings. Families need to know


1. Assessments
that they have professional partners who will back • Child/youth/family
them and a team that facilitates cross-organizational
communication and collaboration. Care tools, such as
portable care plans, help to pull these multiple pieces
together into a coherent description of goals, assets, 5. Monitoring 2. Planned care
and needs with action steps to address them. Trusting • Responsibility • Goal setting
relationships are therefore cultivated between and • Accountability • What matters
among children, families, and the medical home team.
Historically, the family experience of care has been
one of fragmentation—the opposite of coordination.
When care is disjointed, families encounter a confus- 4. Implementation 3. Care plans
ing matrix of people, services, and systems instead of • Plans = role scripts • Care and action plan
the synergy of supports that they need. Effective care and documentation • Accountability
coordination integrates these people, services, and
systems, thereby increasing the value of care. Care
coordination demonstrates this integration through
Figure 7-1 Shared plan of care: implementation with
timely, clear communication with patients and fami-
families.
lies, team members in the medical home, other health
care providers across other settings, and community-
based organizations.
A set of care coordination services should be de- any information the family wants each professional to
fined and made available to families; such services or understand about their child. The emergency plan
functions are outlined in the report Making Care Coor- supplements this with clear actions to take in re-
diation a Critical Component of the Pediatric Health sponse to an adverse event. Engaged patients and
System: A Multidisciplinary Framework, published by families, together with the physician and team, set
the Commonwealth Fund. Families need to know that goals for the management of care, self-care, and re-
these care coordination supports are available and source utilization. An action plan is developed with
how to access them. Awareness of practice-based care specific goals, objectives, and interventions to address
coordination can be achieved with descriptive bro- specific concerns. The action plan component of com-
chures, posters, flyers, and information on the prac- prehensive care planning clearly identifies who will be
tice’s Web site. responsible for each action, documents when each
process occurs, and provides for continuous updat-
ing. (See Figure 7-3.)
A CARE COORDINATION MODEL 3. Implementation/Use: When the action plan is put
Essential, continuous cycles of coordination include in motion, all team members know each other’s
the use of assessments, care planning with mutual roles and actions. The family and the team have ac-
goal setting, care plan implementation, and monitor- cess to an electronic copy or (as necessary) a paper
ing with evaluation. (See Figure 7-1.) copy of their plan. The medical home team initiates
1. Assessment: Identification of child and family and facilitates specific activities and interventions
needs is the first step in the care coordination pro- that lead to accomplishing the set goals. For exam-
cess. Accordingly, medical home team members ple, they may convene a community team to estab-
collect and review medical, educational, and other lish a common intervention strategy, or a team
information and concerns. They also obtain infor- member may reach out to a pediatric subspecialist
mation about family strengths, goals, needs, and to learn more about a condition in order to support
available resources. This assessment might be comanagement efforts at the community practice
broad or narrow, depending upon the family cir- level. Patients may participate in care skills building,
cumstances, and it should be repeated at predeter- and families may use relationships or links provided
mined intervals. Many primary care practices use a to connect to community resources and supports.
social worker, nurse, or family advocate to support Each action item in the plan includes goal-oriented
these activities. (See Figure 7-2.) time targets. Care and action plans serve as guides
2. Care Planning/Goal Setting: Child, youth, and fam- or scripts for the team’s coordinating efforts, inter-
ily assessment results inform the creation of a com- actions, and monitoring. Planned follow-up visits
prehensive shared plan of care. Family and medical provide the opportunity for measuring progress
home team goals should guide this plan. While every and keeping the plan current.
child benefits from a plan of care, comprehensive care 4. Monitoring: The medical home team gathers infor-
planning is critical for children with more complex mation about the activities, interventions, and ser-
needs or circumstances. Comprehensive care planning vices outlined in the action plan. Was the specialist
involves using intake information and assessment re- referral appointment made and kept? What are the
sults to create a medical summary, an emergency plan results? What subsequent tests were completed?
(if needed), and an action plan. The medical summary What about other recommendations and needed
includes relevant history, diagnostic concerns, medi- resources? The team and family determine the ef-
cations and treatments, allergies, information about fectiveness of care and services in reaching desired
subspecialists and other key physicians involved, and goals and outcomes, and what further steps are
46 PART 1: DELIVERING PEDIATRIC HEALTH CARE

Patient Name Date

1) What would you like us to know about your child?


What does he/she do well? Like? Dislike? What matters to them?

2) What would you like us to know about you/your family? What matters to your family?

3) Do you have any concerns or worries for your child? (Some examples below)
❑ Their growth/development ❑ Doing things for themselves
❑ Learning ❑ Falling behind in school
❑ Sleeping ❑ Behavior
❑ Self-care ❑ The future
❑ Making and keeping friends ❑ Playing with friends
❑ Other (fill in):

4) Have there been any changes since we saw you last, such as a:
❑ Brother or sister leaving home? ❑ New job or job change?
❑ Move to a new town? ❑ Separation or divorce?
❑ Sickness or death of a loved one? ❑ Other (fill in below)?

5) Can we help you with any of the following needs?


❍ Medical (For example, help finding or understanding medical information; help
finding health care for yourself or your family)?

❍ Social (For example, having someone to talk to when you need to; getting
support at home; finding supports for the rest of your family)?

❍ Educational (For example, explaining your child’s needs to teachers; help


reading or understanding medical information)?

❍ Financial (For example, understanding insurance or finding help paying for needs
that insurance does not cover-such as medications, formulas, or equipment)?

❍ Legal (For example, discussing laws and legal rights about your child’s health care
or their school needs )?

❍ General. Please let us know what else you need help with (if we don’t know, we will
work with you to find the answer)?

Notes:

Figure 7-2 Pediatric care coordination assessment tool.

needed. Periodic check-in opportunities help the A key strategy used by practices to help them coordi-
family-centered team maintain positive momentum. nate care involves creating a designated practice role
Assessments are refreshed, and changes are made filled by someone who acts as a care coordinator. This
to the plan with new needs and ideas incorporated. staff person shares responsibility for coordination
The action plan is the dynamic portion of compre- of care with the rest of the medical home team and
hensive care planning and serves to provide proac- family. The time required to redesign a system of
tive, preventive, and planned population care. reactive coordination of care into a more planned,
proactive approach is time well spent. For example, a
physician might see 2 or 3 more urgent patients dur-
ACHIEVING THE FUNCTIONS OF CARE ing time realized through the use of a team member
COORDINATION IN THE MEDICAL HOME who is designated to perform cross-organizational
Many pediatricians have questioned how they can communication and patient education. Many practices
possibly provide all that comprehensive care coordi- have redirected registered nurses from triage roles to
nation is meant to be within their medical home. Care provide population care, registry management, pro-
coordination is a time- and resource-intensive service. active patient and family assessments, education, and
CHAPTER 7 • Planned Coordinated Care to Support the Medical Home 47

Child’s name: DOB: Parents/Guardians:


Primary diagnosis: Secondary diagnosis: Secondary diagnosis(s)

Original date of plan: Last Updated: / / / / /

1) Patient/Family Goal(s) (1)


2) Clinical Goals (2)

Person(s) Progress Date or


Main Concerns/Priorities Current Plans/Actions
Responsible Date Complete?

Parent/Caregiver Signature: Clinician Signature: Care Coordinator:

Figure 7-3 Share plan of care: negotiated actions.

outreach. Others have used a social worker, family indeed the development of care coordination as a
member, or other layperson familiar with community standard of care.
resources to help link families with needed supports
and services.
Some practices are too small to afford a dedicated
DEMONSTRATING THE BENEFITS
care coordinator position. In those settings, someone OF CARE COORDINATION
with at least partial responsibility can ensure that the Measurement of ongoing progress can be achieved
practice is managing care coordination functions ef- with activities like tracking the number of action plans
fectively. They might achieve this by distributing care in place or monitoring how care plan goals are ad-
coordination functions across various staff or by bet- dressed and met. Gaining direct family feedback about
ter utilizing any outside care coordination resources. experiences and benefits is invaluable. Outcome mea-
In such situations it is important to articulate the in- sures can assess families’ satisfaction with their use of
tent to enhance the coordination of care and put a care coordination. Many practices engage families as
plan in motion to achieve team-based coordination. partners in their medical home improvement efforts.
Links to resources to aid practices in this develop- These families can guide and evaluate the developing
ment, such as care coordination models, role descrip- role of the care coordinator. Families can also assist by
tions, and related competencies, can be found in Tools speaking to the critical role care coordination holds in
for Practice at the end of this chapter. supporting them to raise, care for, and achieve opti-
A designated care coordinator fosters the delivery mal health for their children and youth.
of family-centered services through a continuous cy- A medical home team approach with fully devel-
cle of assessment, goal setting, care planning, and oped care coordination services will also improve
follow-up. Someone in this role can help the team health and cost outcomes for children, youth, and
know families better, facilitate access to the team by families, and will increase the satisfaction of those
being the point person in between visits, become an receiving care. A number of studies have shown sig-
expert in community resources and government pro- nificant benefits related to implementation of care
gram eligibility, encourage family-to-family connec- coordination models. These benefits include
tions and supports, and build the team’s capacity and • Achieved patient/family goals
ability to achieve its goals. A professional in this • Reduced unmet needs
unique role must possess an array of key competen- • Increased parent/caregiver social connectivity
cies and attributes. Smart hiring is important, as it • Improved patient/family satisfaction
takes a special person, passionate about the success of • Improved communication among all stakeholders
children and families, to provide excellent coordina- Examples of cost outcomes include reduced hospi-
tion of care. Fortunately, we now have new knowl- tal admissions, length of hospital stay, inpatient
edge and tested tools to support these needs and charges, and emergency department visits.
48 PART 1: DELIVERING PEDIATRIC HEALTH CARE

Creating patient-friendly experiences in the medical AAP POLICY


home also helps to create a favorable work environ-
American Academy of Pediatrics Council on Children With
ment that can lead to increased physician and staff Disabilities and Medical Home Implementation Project
satisfaction. Early adopters have addressed achieving Advisory Committee. Patient- and family-centered care
care coordination with grants, collaborations, partici- coordination: a framework for integrating care for
pation in demonstrations, data collection, and negoti- children and youth across multiple systems. Pediatrics.
ation with health plans. While costly, developed care 2014;133(5):e1451–e1460 (pediatrics.aappublications.org/
coordination activities align practices for health care content/133/5/e1451)
reform activities and opportunities. American Academy of Pediatrics Council on Children With
Disabilities. Care coordination in the medical home:
integrating health and related systems of care for
SUMMARY children with special health care needs. Pediatrics.
Highly functioning pediatric medical homes, provid- 2005;116(5):1238–1244 (pediatrics.aappublications.org/
ing family-centered care and including flexible access, content/116/5/1238)
population approaches, and comprehensive team- American Academy of Pediatrics Medical Home Initiatives
based coordination, are emerging as a new standard for Children With Special Needs Project Advisory
of pediatric quality. A model of care coordination Committee. The medical home. Pediatrics. 2002;
needs to be explicitly identified and shared—what, 110(1):184–186. Reaffirmed May 2008 (pediatrics.
how, and for whom. Coordination tools such as aappublications.org/content/110/1/184)
American Academy of Pediatrics Medical Home Initiatives
assessments and goal-oriented care plans provide
for Children With Special Needs Project Advisory
mechanisms for measurement and demonstration of Committee. Organizational principles to guide and
quality. This is the future of pediatrics: the medical define the child health care system and/or improve the
home, family partnerships, and well-coordinated health of all children. Pediatrics. 2004;113(Supp 4):
team-based care. 1545–1547 (pediatrics.aappublications.org/content/113/
Supplement_4/1545)
American Academy of Pediatrics Council on Community
TOOLS FOR PRACTICE Pediatrics. Providing care for immigrant, migrant, and
border children. Pediatrics. 2013;131(6):e2028–e2034
Engaging Patient and Family
(pediatrics.aappublications.org/content/131/6/e2028)
• Building Your Care Notebook (Web page), American
Academy of Pediatrics (www.medicalhomeinfo.org/
for_families/care_notebook) SUGGESTED READINGS
• Emergency Information Form for Children With Antonelli R, Antonelli D. Providing a medical home: the cost of
Special Needs (template), American Academy of care coordination services in a community-based, general
Pediatrics (www.aap.org/advocacy/blankform.pdf) pediatrics practice. Pediatrics. 2004;113(Suppl 4):
• Hospital Stay Tracking Forms (file archive), Na- 1522–1528
tional Center for Medical Home Implementation Cooley WC, McAllister JW, Sherrieb K, Clark R. The
( m e d i c a l h o m e i n f o . a a p . o rg / t o o l s - re s o u rc e s / Medical Home Index: development and validation of a
new practice-level measure of implementation of the
Documents/Hospital%20Stay%20Tracking%20
medical home model. Ambulatory Pediatrics. 2003;
Forms.zip) 3(4):173–180
• Partnering in Self-Management Support: A Toolkit McAllister JW, Cooley WC, Van Cleave J, Boudreau AA,
for Clinicians (Web page), National Center for Med- Kuhlthau K. Medical home transformation in pediatric
ical Home Implementation (www.medicalhomeinfo. primary care—what drives change? Annals of Family
org/how/care_partnership_support.aspx#self) Medicine. 2013;11(Suppl 1):S90–S98
• Pediatric Care Plan (template), National Center for McAllister JW, Presler E, Cooley WC. Practice-based care
Medical Home Implementation (medicalhomes.aap. coordination: a medical home essential. Pediatrics.
org/Documents/PediatricCarePlan.pdf) 2007;120(3):e723–e733
• Pediatric Specialists (Web page), American Academy
of Pediatrics (www.healthychildren.org/English/
family-life/health-management/pediatric-specialists/
Pages/default.aspx) Chapter 8
Practice Management and Care Coordination HEALTH LITERACY
• APEX Digital Navigator (practice transformation
tool), American Academy of Pediatrics (www.aap.
org/apex) Laura Shone, DrPH, MSW
• Improving Systems of Care for Children With Spe-
cial Health Care Needs (Web page), Lucile Packard
Foundation for Children’s Health (www.lpfch.org/
programs/cshcn)
• Measuring Medical Homes: Tools to Evaluate the INTRODUCTION
Pediatric Patient- and Family-Centered Medical Definition of Health Literacy
Home (monograph), National Center for Medical Health literacy is defined by Nielsen-Bohlman and col-
Home Implementation (medicalhomeinfo.aap.org/ leagues and Berkman, respectively, as the set of skills
tools-resources/Documents/Monograph_FINAL_ that “allow an individual to obtain, process, understand,
Sept2010.pdf) and communicate information about health; function in
CHAPTER 8 • Health Literacy 49

the health system, and make informed decisions during to dangerous. To manage disease, promote health, and
different phases of life.” Health literacy is distinct prevent harm, patients need to make sense of the health
from—yet often confused with—general (reading) lit- information they hear, read, see, and experience in all of
eracy; this distinction hinges on context. General liter- these contexts. An example of an encounter in which
acy describes the ability to “use printed and written the health literacy level of the parent affects the health
information to function in society, to achieve one’s of a child is in Box 8-1.
goals, and develop one’s knowledge and potential.” In
contrast, health literacy addresses these skills specifi- Levels of Health Literacy
cally in the context of navigating the health care and The 2003 National Assessment of Adult Literacy catego-
health insurance systems; using and understanding rized 4 levels of health literacy: below basic, basic, ad-
health information; managing health conditions, treat- equate, and proficient (Figure 8-1). At the below basic
ment and medicine use; and making health decisions— level (14% of the US English-speaking population),
both individually and on behalf of others. individuals cannot use a bus or television schedule,
Health literacy problems interfere with an individual’s understand an appointment slip, or complete medical
ability to access and pay for medical care, understand paperwork—meaning that they have great difficulty just
health care advice, weigh the risks and benefits making or getting to a medical appointment. Although
of health decisions, follow recommendations for most US adults have basic (24%) or adequate (50%)
treatment, use medicines safely and correctly, and un- health literacy, the demands of the US health care sys-
derstand rights and responsibilities in health care. Peo- tem more often require proficient skills. Everyday health
ple with limited health literacy face great difficulty in behavior and decisions, use of the health system, and
managing basic demands of the health system. How- response to public health warnings increasingly require
ever, health literacy is increasingly understood as a proficiency, yet only 12% of US English-speaking adults
shared challenge and opportunity to balance the needs function at this level, with the skills necessary to under-
and skills of individuals with the complex demands of stand and use medicolegal documents such as a con-
modern health care. However, health literacy problems sent form, medical release, or health care proxy.
extend beyond the health system itself. “People confront Susan’s case exemplifies one of many ways in which
a complex and potentially overwhelming set of health health literacy can affect pediatric care. Nationally,
messages every day,” through health experiences and 30% of English-speaking parents have health literacy
interactions, friends and family, the news and advertis- problems, yet this overall estimate can under-represent
ing media, and the virtual world of email and Web- the scope and magnitude of specific challenges in pe-
based information from sources that range from reliable diatric care. When faced with scenarios in a national

BOX 8-1 A Case Study in Health Literacy


Susan’s daughter had been ill for several days when she took her to the pediatrician. The doctor examined her daughter and
diagnosed mild otitis media. He explained that this was probably caused by a virus, for which antibiotics are ineffective.
Because parents are so used to receiving antibiotics for otitis, he was especially careful to explain why antibiotics were not
necessary, assuring Susan that the baby would gradually get better over the next several days without them. He pre-
scribed ear drops, and also recommended an over-the-counter analgesic to reduce fever and relieve pain. Finally, he re-
minded Susan to push fluids, reassured her that her daughter would be fine, and sent her to the drugstore. Several days
later, the doctor received a call from the emergency department: Susan was there with her daughter, who was febrile,
hyponatremic, and in obvious pain.
What happened? During the visit, the pediatrician recommended 2 liquid medicines, both to be administered as drops. At
the drugstore, Susan filled the prescription and purchased acetaminophen liquid. Over the next several days, she gave
the 2 medicines exactly on schedule; 1 by mouth and 1 in the baby’s ears. She also forced her daughter to drink as much
as she possibly could.
What went wrong? When Susan got home with the 2 medications, she knew that one was meant to be swallowed and one
was meant to go in the baby’s ears. With both medications in the same bag, she wasn’t sure which was which, so she
thought back to what the doctor had said. She knew that her daughter had an ear infection, and remembered that the
doctor spent a lot of time talking about antibiotics. That made sense, because that’s what you get for ear infections—
antibiotics. She also knew that one medication was a prescription and the other was a “regular” medicine, that anybody
could buy, to help with the pain in her daughter’s ears. Well, that made it easier, she thought: the one for pain goes in
the baby’s ears, because that’s where the pain is; and the prescription must go into her mouth because that’s how you
take antibiotics—you swallow them. Over the next few days, 3 things combined to send Susan and her daughter to the
emergency department: she gave the ear drops by mouth and placed acetaminophen drops in her daughter’s ears. In ad-
dition, because the doctor said to “push fluids,” she wound up overhydrating her daughter to the point of hyponatremia.
What can be done? This case involves health literacy—but it is not just about Susan, it is about the health system as a
whole and Susan’s experiences within it, and it is about unfamiliar situations, multiple interactions, and the many places
within the process where communication and understanding can break down.

Adapted from Abrams MA, Dreyer BP, eds. Plain Language Pediatrics: Health Literacy Strategies and Communication Resources for Common Pediatric Topics.
Elk Grove Village, IL: American Academy of Pediatrics; 2009.
50 PART 1: DELIVERING PEDIATRIC HEALTH CARE

National Assessment of Adult Literacy One way to better understand this otherwise invisible
problem is to measure health literacy. The most com-
Proficient ( 14%): mon health literacy measurement tools have been devel-
Can Calculate annual health costs from price table oped and validated for adults, whereas few tools exist to
Can Search document to define medical term (use context) measure health literacy in children. Most common mea-
Can Use legal health documents (consent, release, proxy)
sures assess 1 or more of the following: word pronun-
ciation, reading comprehension (prose literacy), ability
Intermediate ( 50%): to understand numbers and perform basic arithmetic
Can identify drug interactions from OTC medicine label calculations (numeracy), and ability to derive meaning
Can choose correct age for vaccine from immunization chart from context (document literacy). Newer tools have ex-
panded to assess the performance of basic health tasks
among parents, adolescents, and young adults. Exam-
Basic (22%):
ples of commonly used tools include:
Can understand chronologic: Mammogram every year after
age 40
• The Rapid Estimate of Adult Literacy in Medicine
Cannot understand conditional: OR if you have a lump or (REALM) and REALM-Teen: Both are 66-item word
feel pain pronunciation tests, without context. Both take 2 to
3 minutes to administer 3 lists of words, and are
scored by the number of words the participant is
Below Basic (14%): able to pronounce correctly. The cutoff scores are
Cannot Use schedules (bus, TV) high because the test is meant to give all partici-
Cannot Understand medical appointment slip
pants a positive experience: there are many easy
Cannot Fill out medical or insurance forms
words and a smaller number of words that are dif-
ficult. By design, most respondents can get more
Figure 8-1 The 4 levels of health literacy from the National than half correct even if literacy is very limited
Assessment of Adult Literacy. (REALM scoring accounts for this). Because it is a
word pronunciation test using English-language
words, there is no equivalent in non-English lan-
guages. The Teen REALM has been validated for
study, nearly 70% of parents could not correctly record use in middle- and high-school-aged students (some
basic information such as names or dates of birth on a “mature” words were replaced with word content
health insurance form; 66% were unable to calculate more appropriate for children).
the annual cost of a health insurance policy based on • The Short Test of Functional Health Literacy in
family size; and 46% were unable to perform 1 or more Adults (S-TOFHLA) involves both reading and
medication-related tasks. numeric calculation. Reading comprehension ques-
It is impossible to gauge a parent’s health literacy. tions ask participants to choose from a list of words
Health literacy problems affect millions of people of all to complete the missing part of a sentence. For
ages, races, income levels, and education levels, yet these some, they look at a prompt and then respond. For
problems are often hidden because adults with limited others, they must choose from among multiple-
health literacy may feel ashamed of or conceal their choice options the word that makes the most sense.
struggles to read or understand material. These limita- This measures ability to determine meaning from
tions have direct consequences for children, whose context. For the example, “your doctor has sent you
health care these parents are responsible for, as well as to have a [blank] x-ray,” the choice that makes the
for the pediatricians who provide their medical care. most sense is “stomach.” This tool has a time limit
of 7 minutes—most participants finish quickly, but
all participants must stop at 7 minutes, whether or
not they are done. There are different variations of
MEASUREMENT AND MANAGEMENT this tool: the original TOFHLA (or “long” TOFHLA)
OF HEALTH LITERACY takes approximately 22 minutes. The S-TOFHLA is
Measurement science has been at the root of health limited to 7 minutes as described above. This tool is
literacy research: first, to describe the nature and available in English and Spanish.
prevalence of the problem, and then to monitor trends • The Newest Vital Sign (NVS) involves 6 questions
in prevalence and disparities over time and across sub- about a nutrition facts label from a package of ice
groups. However, measurement of health literacy cream. Participants view a prop card containing the
during routine clinical practice is seldom recom- label and then answer 6 questions that are read by
mended. Instead, accumulated evidence provides an interviewer. Examples of the questions include
strong rationale for the use of universal precautions the following:
for clear communication. Universal precautions will be • “If you eat the entire container, how many calo-
discussed further throughout the chapter. However, ries will you eat?”
because an understanding of measurement in the • “If you are allowed to eat 60 grams of carbohy-
context of health literacy offers both context and ratio- drates as a snack, how much ice cream can you
nale for the tools and strategies available to physicians, have?”
this section will provide an overview of measurement, • “If you are allergic to penicillin, peanuts, latex,
including historically dominant tools, evolution of and bee stings, is it safe for you to eat this ice
approaches to measurement, and emerging tools. cream?”
CHAPTER 8 • Health Literacy 51

A score of 4 to 6 indicates adequate literacy; 2 to 3 stresses a family, staff member, or colleague may be
indicates that literacy problems are possible; 1 to 2 facing; therefore, practicing universal precautions for
indicates that literacy problems are likely. The NVS is clear communication with everyone can minimize
also available in Spanish. confusion and enhance patient–physician experiences.
Universal precautions can include the use of picto-
Evolution of Measurement and grams to represent information visually as well as
Emerging Tools verbally; the use of techniques like teachback, whereby
Measurement has continued to evolve toward more the pediatrician or nurse asks a patient to teach back to
skills-based tools that address literacy and numeracy the physician the information or action just described;
in simulated real-world task scenarios. Specific exam- or Ask Me 3, which involves teaching new communi-
ples in pediatric health literacy include the Parent cation skills to empower patients.
Health Literacy Activities Test (PHLAT). The PHLAT
Teachback
asks parents to act out or demonstrate what they do
(or would do) in several scenarios common to child One of the most useful and important universal pre-
health, such as dispensing and administering a dose of cautions techniques is teachback. In teachback, the
liquid medicine using label instructions and dosing physician literally asks patients to teach back, or walk
instruments. This evolution toward more pragmatic through, the treatment or process the physician just
and comprehensive measurement approaches is par- described. Teachback is iterative, with each partici-
ticularly important for underserved parent, adolescent, pant confirming and clarifying points of confusion or
and young adult populations because more reading- misunderstanding, until the physician and the patient
focused instruments can produce high scores that miss are able to describe the information to one another in
the chance to identify low numeracy. the same way. For example, when a new medicine is
There has been some concern that use of screening prescribed, pediatricians can enhance patient and
tools in clinical settings could cause embarrassment for parent understanding by demonstrating how the
children, particularly for those who have literacy prob- medicine should be used and then asking the patient
lems. At the same time, most participants in one study or parent to teach back the process or steps as they
reported no shame (99%) from screening with the NVS. understood them.
Measurement among a sample of patients within a The purpose of teachback is twofold: it is confirma-
practice can provide practice-level estimates of health tory for the physician and identifies when information
literacy to inform decisions about practice-level strate- should be clarified or repeated; and, for the patient, the
gies and to become a more health-literate practice; experience of teaching new information or a new pro-
however, routine measurement of health literacy for cess back to the physician helps to move information
individual patients at visits is not recommended. from working memory to long-term memory and thus
enhance comprehension. Demonstration and teachback
A Universal Precautions Approach can be particularly useful in ensuring patient adherence
One alternative to measurement in clinical settings is and safety with new treatments or medicines, particu-
the use of strategies for clear communication in clinical larly if dosing instruments or equipment such as a
practice. The Agency for Healthcare Research and spacer or inhaler are required. Teachback can also be
Quality (AHRQ) encourages physicians to use universal used to confirm that patients understand the risk and
precautions for health literacy—to employ evidence- benefits of different treatments or health choices.
based techniques to communicate, clarify, and confirm Ask Me 3
information in clinical care. Because it is impossible to Pediatricians can also empower parents and patients
tell which patients have problems with health literacy to facilitate their own understanding. The Ask Me
(and because only those who have proficient skills can 3 method teaches patients to ask 3 questions at every
manage most health situations), the universal precau- health visit:
tions approach encourages use of the clearest commu- 1. What is my main problem?
nication possible with everyone at all times. 2. What do I need to do?
In Susan’s case, the stress of parenthood, sleepless- 3. Why is it important for me to do this?
ness, and having a sick baby may have been factors, Along with routine use of teachback, pediatricians
yet other life stresses can also play a role. This phe- can teach parents and patients together to use these
nomenon extends to staff and others in the practice; if questions, and—over time—can model and reinforce
only 12% of adults have proficient health literacy, that patients’ growth in their use of Ask Me 3 until it
leaves 9 of every 10 English-speaking adults with some becomes second nature. Teachback and Ask Me 3 are
degree of health literacy problem. Furthermore, stress highly complementary, with patients and physicians
can compete with the ability to focus and therefore teaming together to enhance communication, under-
interferes with the ability to understand medical infor- standing, adherence, and safety.
mation that may otherwise seem routine or simple.
Stress does not discriminate: those who work in the
practice are as likely as patients to be included in this
HEALTH LITERACY IN PEDIATRIC
group. Some individuals may struggle routinely, PRACTICE
whereas others who function well under normal Pediatricians are becoming more aware of health lit-
circumstances may become confused when dealing eracy and the importance of responding to communi-
with a stressful, traumatic, or unexpected medical cation challenges in health care, yet their use of
event. Pediatricians may not always know what other evidence-based techniques in office practice is limited.
52 PART 1: DELIVERING PEDIATRIC HEALTH CARE

To help encourage the practice-based use of medicines for children, labels on all prescription drugs
evidence-based techniques, AHRQ has produced a can be equally unclear, inconsistent, and confusing
comprehensive toolkit, which is available on the Inter- for patients. As the Safe Use Initiative of the US
net at no cost (see Tools for Practice at the end of this Department of Health and Human Services and the
chapter). It includes video case examples like Susan’s; Food and Drug Administration undertake efforts to
examples of patient materials such as pictograms for address labeling issues, efforts to support and
medicine use and asthma action plans that can be enhance parents’ skills continue to advance. In a
adapted for specific needs of an individual practice; small but growing body of evidence, interventions to
and quality improvement tools to assess the practice address health literacy of caregivers, or of children
and identify opportunities for practice change. themselves, have shown promise in helping caregiv-
Links to these and other resources, including tool- ers learn to better understand written materials such
kits of patient materials to support practices in imple- as consent forms and vaccine information, improved
menting these methods, are included in Tools for management of asthma, and reduced errors in ad-
Practice at the end of this chapter. ministration of liquid medicines to children.
During the past decade, a wide range of interven-
tions have demonstrated some success in improving Health Literacy and Children
medication adherence, management of chronic illness, Pediatricians should recognize the health literacy
understanding of specific health information, and abil- needs of parents but should also consider the develop-
ity to safely complete specific health tasks. Although ment of health literacy in children. Developmental
most of these interventions have been conducted in theories support the ability of children and adolescents
adults, evidence for the importance of parent health to develop health literacy skills through age-appropri-
literacy in caring for children is mounting. There is also ate information and experiences. One conceptual
increasing interest in exploring potential developmen- model frames health literacy in a developmental con-
tal links between parent or caregiver health literacy and text as health learning capacity. This framework synthe-
child health literacy. As the field of health literacy sizes evidence from the fields of education, cognitive
expands beyond its original exploration of age-related science, and psychology into a constellation of cogni-
cognitive decline to encompass parents, children, and tive and psychosocial skills that can be learned and are
adolescents, it is beginning to incorporate health liter- needed to “promote, protect, and manage one’s own or
acy development in addition to health literacy decline. a child’s health.”
Health literacy in pediatric care therefore becomes an Ideally, health learning builds cumulatively. Health
opportunity for learning and growth for parents, awareness develops throughout childhood and early
children, and pediatricians. adolescence; knowledge, experience, and indepen-
dence in making decisions build during middle and late
adolescence; and increasing autonomy and responsibil-
Health Literacy and Parents ity culminate in self-management of health among
As Susan’s case illustrates, a parent or caregiver’s young adults. Evidence about cognitive development
health literacy skills affect that individual’s ability to supports this progression: from basic or functional
make health decisions for a child. Studies have linked skills (concrete operational), to the development of
health literacy problems among parents with poorer interactive skills (formal operational), and finally to the
health outcomes among their children, finding the most maturation of executive function (the ability to plan,
dramatic effects among young children. Parents who reason, apply logic, problem-solve, generalize, and
have health literacy problems may be unable to cor- apply information in new situations).
rectly administer medicines to children using dosing Framing health literacy in this developmental context
instruments and consumer medication information (ie, allows delineation of potential roles for the pediatrician
package inserts or label instructions); may struggle to to enhance health learning through experiences for
understand written material, including medical forms both parents and patients. Physicians can teach, model,
and schedules for recommended visits, immunizations, role-play, rehearse, and reinforce key health concepts,
or preventive screening; and may have difficulty man- skills, and processes during regular health care encoun-
aging a child’s chronic health conditions such as asthma ters. In turn, both parents and pediatricians can do the
or diabetes. same to encourage health learning in children and
Medicine packages routinely contain confusing, adolescents. At the end of this chapter are resources
incomplete, or incorrect information about how to that pediatricians can use to address and ameliorate
administer a dose of medicine for a child. One study health literacy problems in pediatric practice.
of measuring devices and label instructions for the
top-selling liquid medicines for children found that in SUMMARY
98.6% of cases, the dosing instruments and label in- Every interaction between patients and physicians or
structions were inconsistent, particularly for units of individuals and health systems shapes the health lit-
measure and recommended dose. Such problems in- eracy of parents, their children, and ultimately society.
clude missing markings, extraneous markings, atypi- Using the techniques and resources described in this
cal units of measurement, and use of different units chapter, pediatricians can take tangible steps to alter
of measurement on the device and on the label these interactions. Health literacy problems compro-
instructions (eg, label indicates teaspoons, whereas mise every aspect of individual health, medical care,
measuring device is labeled in milliliters). Although and health outcomes and influence health-related
this example comes from a study of labels on 148 liquid interactions within and outside of a practice. Health
CHAPTER 9 • Partnering With Families in Hospital and Community Settings 53

literacy is a clinical, public health, ethical, and dispari- • Proceedings of the Surgeon General’s Workshop on
ties issue; for this reason, the US Department of Improving Health Literacy (booklet), Office of the US
Health and Human Services has highlighted health Surgeon General (www.ncbi.nlm.nih.gov/books/
literacy as national health priority. As highlighted by NBK44257/)
Dr. Rima Rudd, although providers “can do little to • What Is Clear Health Communication? (Web page),
improve literacy skills of the public, they can re- Pfizer Inc. (www.pfizer.com/health/literacy/health
examine their own activities, assumptions, and care_professionals/overview_of_health_literacy_
[practice] environments to remove literacy-related health_communication/what_is_clear_health_
barriers.” The pediatric community is a critical constit- communication)
uent in these and other efforts to improve communica-
tion, enhance patient safety, simplify health systems
when possible, and foster the development of health SUGGESTED READINGS
literacy skills in parents and patients. Berkman ND, Davis TC, McCormack L. Health literacy:
what is it?J Health Commun. 2010;15(Suppl 2):9
Borzekowski DL. Considering children and health literacy: a
theoretical approach. Pediatrics 2009;124(Suppl 3):S282
TOOLS FOR PRACTICE
Nutbeam D. Health literacy as a public health goal: a
Engaging Patient and Family challenge for contemporary health education and
• Ask Me 3 (Web site), National Patient Safety Foun- communication strategies into the 21st century. Health
dation (www.npsf.org/?page=askme3) Promot Int. 2000;15(3):259–267
• What Is Health Literacy? (fact sheet), Pfizer (www. VanGeest JB WV, Weiner SJ. Patients’ perceptions of
pfizer.com/health/literacy/patients_and_families) screening for health literacy: reactions to the Newest
• What to Do for Health (books), Institute for Healthcare Vital Sign. J Health Commun. 2010;15(4):402–412
Yin HS, Johnson M, Mendelsohn AL, et al. The health
Advancement (www.iha4health.org/our-products)
literacy of parents in the United States: a nationally
representative study. Pediatrics 124(Suppl 3):S289, 2009
Medical Decision Support
• Attributes of a Health Literate Organization (booklet),
Brach C, et al; Institute of Medicine (www.iom.edu/~/
media/Files/Perspectives-Files/2012/Discussion-
Papers/BPH_HLit_Attributes.pdf) Chapter 9
• FDA Safe Use Initiative: Collaborating to Reduce
Preventable Harm from Medications (booklet), US
PARTNERING WITH FAMILIES IN
Food and Drug Administration (www.fda.gov/ HOSPITAL AND COMMUNITY
downloads/Drugs/DrugSafety/UCM188961.pdf)
• Health Literacy: A Prescription to End Confusion SETTINGS
(book), National Academies Press (www.nap.edu/ Ruth R. Walden, MSW; Molly Cole
catalog.php?record_id=10883)
• Health Literacy Resources (Web page), Centers for
Disease Control and Prevention. (www.cdc.gov/ During Nick’s childhood he was seen by a series of
healthliteracy/Learn/Resources.html) orthopedic surgeons; neurologists; other pediatric
• Health Literacy (Web page), American Medical Asso- specialists; nurses and nurse practitioners; and
ciation (www.ama-assn.org/ama/pub/about-ama/ama- physical, speech, and occupational therapists. This
foundation/our-programs/public-health/health- rotation of health professionals is the norm for kids
literacy-program.page) like Nick. But we have always been there, bringing
• Health Literacy Universal Precautions Toolkit (toolkit), him home from the hospital in a full-body cast,
Agency for Healthcare Research and Quality (www. hosting birthday parties, learning to deal with his
ahrq.gov/professionals/quality-patient-safety/quality- seizures, trying out new wheelchairs or computers,
resources/tools/literacy-toolkit/index.html) modifying our work schedules, teaching him to
• The Medical Library Association Guide to Health swim, remembering medicines, helping with
Literacy at the Library (book), the Medical Library homework, finding an accessible summer camp.
Association (www.alastore.ala.org) When our family moved . . . our pediatrician
• National Action Plan to Improve Health Literacy offered to continue to follow Nick and his siblings.
(booklet), US Department of Health and Human Ser- But he also encouraged us to visit a nearby rural
vices Office of Disease Prevention and Health Pro- primary care clinic. [Our doctor] and his clinic
motion (www.health.gov/communication/HLAction staff grew to know and understand Nick and his
Plan/pdf/Health_Literacy_Action_Plan.pdf) changing diagnoses. We became comfortable at
• Plain Language Pediatrics: Health Literacy Strategies the clinic, dropping in before dinner for a quick
and Communication Resources for Common Pediat- consultation or to check blood levels. For 12 years
ric Topics (book), American Academy of Pediatrics Nick’s schools trusted [his] experience and
(shop.aap.org) routinely followed his guidance about therapy
• Plain Language Principles and Thesaurus for Making and nutrition routines.
HIPAA Privacy Notices More Readable (booklet), US Knowing that Nick’s primary providers were
Department of Health and Human Services (www. nearby supported our determination to care for
aspiruslibrary.org/literacy/MakingHIPAAPrivacy him at home—a determination inspired by a
NoticesMoreReadable.pdf) pediatric movement called family-centered care
54 PART 1: DELIVERING PEDIATRIC HEALTH CARE

that probably prolonged his life. In family-centered when the parents receive this information, their job
care, professionals . . . and families like ours build is only beginning as well. A parent’s first challenge is
a partnership of trust that helps us make joint sharing the information with other family members,
decisions. Together we connect the science of including other siblings, the spouse, extended family,
medicine with the evidence of daily life. This kind and friends in the community. Having complete infor-
of care returned to my husband and me a sense of mation in a way that family members can understand it
control over Nick’s fragile health. and share it becomes critical for them. Even more chal-
—POLLY ARANGO, “A PEDIATRIC REVOLUTION lenging, parents must then incorporate their child’s
AT HOME.” FROM HEALTH AFFAIRS, SEPTEMBER 2004 unique health care needs into the context of their family’s
hopes, dreams, strengths, and challenges. They must
make tough decisions based on their family’s priorities
and goals. Providing the family with adequate informa-
Parenting a child with special health care needs and tion to make these decisions and respecting choices that
disabilities can be challenging and rewarding. Par- families make are important factors, provided the child’s
ents are faced with accessing care and services from life is not at risk.
multiple health care specialists; allied health services To assist parents through the journey of caring for
such as occupational, speech, and physical therapy; their child, the pediatrician’s focus needs to be on build-
multiple public and private payment sources; and ing a strong partnership with the family. Creating a
early intervention school programs and family sup- trusting relationship, built on mutual respect, and valu-
port programs. Success hinges on the critical ability ing the parents’ knowledge about their child, takes time
of parents to partner with their primary care physi- and requires an initial meeting that is calm, focused,
cian (PCP) in developing and implementing a care and free from distractions in a safe and supportive en-
plan that addresses the unique needs of their children. vironment. Interruptions should be limited, and the
The collaboration of the physician and the family pro- PCP must make sure that the location is private and
motes optimal health for the child. The chief tenets of comfortable. The family should be given some warning
collaborating well with families are outlined in of difficult news so that they have time to bring in other
Box 9-1. family members or other supports. Many parents will
state that the most difficult experience for them is not
hearing the news, but rather being faced with the task
FIRST CONTACT: SHARING of sharing it with their children and other family mem-
UNEXPECTED NEWS bers and trying to answer their questions. If only a
For a pediatrician, sharing the news with parents that single caregiver is present, then a time should be ar-
their child has a special health care need may be a diffi- ranged to speak by telephone to the other family mem-
cult and complex process. (For detailed guidance, please bers. The PCP should help both parents think about
see Chapter 49, Discussing Serious Symptoms, Results, ways to explain this situation to other children and, if
and Diagnoses With the Patient and Family.) Physicians’ possible, should talk to these other siblings as well.
choice of words, willingness to listen and answer Brothers and sisters of a child with special health care
questions, and empathy and support at this time are a needs often report that they felt left out of the care of
critical foundation to building a lasting and trusting their sibling. Their questions should be answered and
relationship with families who may need ongoing and suggestions should be given on how to be involved.
more specialized care within the practice. Just as the job In many instances, when difficult news is shared with
of the PCP for this child’s unique needs is only beginning, families, they hear only the first few words, becoming

BOX 9-1 Guide to Collaborating With Families


1. Respect parents for their knowledge and understanding child’s condition or treatment recommendations.
about their child and their ability to relate to their child. Give the family as much information in as under-
2. Accept the parents, and later the youth, as full and standable a format as possible. Families need this
equal partners in the child’s care. The primary care information in order to partner effectively with
physician and both parents, and, later, the older physicians; they also need to be able to communicate
child, all working together, will be powerful champi- about their child’s condition with their own support
ons to obtain the best results. network of families and friends.
3. Always take the time to listen to parents and the 5. Keep the child as the center of focus.
child. Their words and actions will reflect their emo- 6. If care coordination cannot be provided in the
tional status and provide an opportunity to learn what primary care physician’s practice, then the parents
their wants, desires, and hopes are for their child. should be referred to outside sources of support.
4. Learning about the meaning of the child’s illness or 7. Early in the relationship with the family, discuss the
condition is important to the parents because this in- fact that disagreements will occur. Make an arrange-
formation will explain their actions, reactions, and ment to respect each other’s judgment and to agree
goals for their child and responses to changes in their to disagree.
CHAPTER 9 • Partnering With Families in Hospital and Community Settings 55

so distracted or anxious that they miss much of what is Having the family report on how the child plays and
said. For the health professional, listening is a critical relates to the environment and how the child is doing
part of this exchange. The PCP must ensure that the socially is important, because these interactions may
family members’ questions are answered, and maintain be different from those of the typical child. The par-
enough patience to answer them repeatedly. The ability ents should be engaged in full partnership because
of the PCP to be available to answer calls from the they are the experts on their child. They know the
family, and to check back with family members to see child’s likes, dislikes, behaviors, and abilities. Family
how they are doing is important. Parents may seem to members may need additional time for questions to
be in denial because they have not fully absorbed the be answered and concerns to be addressed. If possible,
complexity of their child’s health condition. the child should be engaged in the discussion about
Once a family has had time to absorb the information, his or her own health and asked about any concerns
share it with other family members, and ask questions, or questions. Writing out instructions for changes in
the time comes to make referrals for other community routine or new medications and how they are to be
supports, such as early intervention programs, family taken is helpful. If an electronic medical record is used
support groups, or other evaluations and treatments. in the pediatrician’s office, it is helpful to provide the
These referrals should be part of a care coordination parent with an electronic personal health record for
plan, developed with the family, to ensure that the plan their child, which can be shared with specialists and
addresses the family’s concerns and answers all ques- other allied health care providers and updated fre-
tions. In this partnership, the care coordination plan will quently. There should be a standardized, routine pro-
be the tool to ensure that the pediatrician’s and the fam- cess for communication among the PCP, specialists,
ily’s priorities are addressed. The referrals outlined in mental health professionals, therapists, teachers, and
this plan are a mechanism to make sure that all the needs anyone else, in order for the medical home team to
of this parent-professional partnership are addressed. function well. The PCP should check to be sure that
During follow-up visits, parents can report what is hap- the family understands the recommendations and that
pening in the early intervention program, school pro- questions are answered before leaving the office. The
gram, or family support program, and they hear results nurse, social worker, or health educator may be able
of the pediatrician’s examinations, tests, and other med- to provide the explanations for the families. Transla-
ical referrals. Thus, the basis of the partnership—mutual tion may be needed for family members who speak a
respect for the knowledge, skills, and experience of both different language. The need to assess the emotional
the parent and the physician—is in place. status of the family, including the siblings, should be
Supporting the family through even relatively sim- emphasized during the visit. Parents should be re-
ple decisions may be necessary. Specialist referrals ferred to the directory of State Title V Programs at
are a decision point that should be reached in partner- their state’s department of health, to Family Voices,
ship with the family. The PCP should listen carefully to Inc. (www.familyvoices.org), and to the local MUMS
the parents as they explain their needs or concerns National Parent-to-Parent Network (www.netnet.net/
and address them in a sensitive and caring manner. mums) to provide avenues for exploring funding of
Although parents may be overwhelmed, their concern services and sources of emotional support and advo-
for their child drives all that they do. Unless the cacy. These programs can also provide matching with
family’s choices will have a negative outcome, pedia- families whose children have the same diagnosis.
tricians must try to empathize, putting themselves in The child with special health care needs often
the family’s place before responding. requires emergency services from the office or the
hospital. The PCP should check with the family to see
OFFICE VISIT if they have an emergency plan in place. The American
Scheduling an office visit for a child with special Academy of Pediatrics and the American College of
health care needs can be a positive experience if a few Emergency Physicians have developed an emergency
accommodations are made. The child’s record should form that can be completed and updated by the physi-
be flagged to indicate if the child needs extended time cian. Copies should be kept with the parents, with
for the appointment or if the child may need to be seen pediatricians, with the child’s car seat or diaper bag,
immediately on arrival to accommodate any special and in school. This document will prepare the emer-
needs. The appointment should be scheduled at a time gency physicians and hospital staff to best meet the
of day that will be easiest on the child, such as the first needs of the child because it will provide baseline in-
thing in the morning, at the end of the day, or right formation. This sheet is used in collaboration with a
before or after lunch. Although many patients request MedicAlert bracelet or tag. Parents should be urged to
these times, legitimate reasons exist for a child with contact their local ambulance company to introduce
special health care needs to be seen at a time that is their child and to help avoid misunderstandings when
best for him or her. Family centeredness is important. an emergency arises. Also important is knowing if the
(See Chapter 6, Medical Home Collaborative Care.) local community hospital is equipped to handle an
Allowing for cultural differences is essential to ensure emergency for the child or if the tertiary care hospital
an optimal visit. (See Chapter 48, Providing Culturally is best suited to deal with the child’s condition. The
Effective Care.) parents should also be advised whether they should
The office visit should not consist only of milestones contact the office in an emergency or on arrival at the
and physical examination, but also allow for dialogue hospital. The parents, if they choose, should be per-
to learn about the child. Getting to know the child and mitted to stay with their child during emergency pro-
observing how the child interacts are important tasks. cedures, including resuscitation. The PCP may be able
56 PART 1: DELIVERING PEDIATRIC HEALTH CARE

to influence the hospital staff to support the family’s emergency department (ED), the hospital staff must
choice. Parents may need support and care coordina- engage the parents as partners in addressing the
tion during and after the emergency situation. crisis at hand. The emergency plan developed with the
Many children with special needs require home care. family will assist the hospital staff in providing a
Discharge planners may initially plan for the home care, smooth ED experience. When contacted by the ED
but the PCP must follow up, complete the paperwork, physician, the child’s health professional can assist in
and direct and coordinate the care. Families should this process by providing the staff with insight into the
be assisted throughout the process. The PCP should parents’ ability to report on their child’s needs
periodically check with the family to ensure consis- accurately and encouraging the staff to use the
tency and quality of care. Home care agencies are often parents’ input during their ED stay.
understaffed and cannot provide consistent care for For a planned hospital admission, the parents must
the child. Parents should be trained to care for their have a clear understanding of the usual information:
children at home but should be advised to also care for the purpose of the admission and what is expected to
their own mental health. The PCP should note that hav- happen during the time the child is hospitalized, po-
ing outsiders who come into the home and intrude on tential challenges, and anticipated discharge. How-
family life is a burden on the entire family. Supporting ever, for a child with special health care needs, other
the family members through this process and referring considerations must also be addressed: special beds,
them for training on how to deal with the home health seating, diets and feeding needs, specialized activities
caregiver can be helpful. If the parents need financial with the child life department or volunteers, commu-
assistance to access the home care, then referral to the nication problems, and behavior concerns. Parents
Katie Beckett Medicaid waiver program or other public should be encouraged to develop a list of their child’s
financing programs in their state should be made. Par- unique care needs and bring the list with them so that
ents can contact the Title V Program in their state, these points can be easily incorporated into the care
which is prepared to direct them to the agency direct- plan with hospital staff.
ing the waiver program for their state. Many parents who have a child with special health
Early intervention, preschool, and school services care needs prefer to stay in the hospital to ensure that
are significant milestones for any child but particu- their child’s unique needs can be met. Some parents
larly for the child with special health care needs. Par- cannot be available for long periods because of other
ents often know the type of setting they want for their commitments. In either case, the PCP is critical to the
child; they understand their child’s learning style and development of a strong working partnership be-
have a feeling for the type of experience that will tween the family and the hospital staff. Parents have
work to make the child’s formative years most unique insight and understanding about their child’s
productive. The physician may be asked to partner care needs, and the staff should be encouraged to seek
with the family to find the most appropriate place- their input during the hospital stay. The PCP should
ment. School placement decisions should include encourage the staff to schedule times to meet with
benefits for the child and the class as a whole. Modi- caregivers, whether they stay at the hospital or not.
fications and the services of a special education Parents must be allowed to be present during proce-
teacher can lead to positive outcomes not just for the dures. The staff should be encouraged to work with
child with special health care needs, but also for the the parents and to incorporate the parents’ knowledge
other children in the class who learn to accept people about their child’s unique care needs into the hospital
who are different. However, if parents choose a less care plan.
inclusive setting in a special class, then their decision Teaching hospitals pose opportunities and chal-
should be honored. lenges. Parents should be encouraged to be present
Information about the child’s clinical needs will help during rounds (“family-centered rounds”) and should
in the development of the best program for the child, be treated as a critical component of the child’s
regardless of the placement choice. Forms for specific hospital care team. Not only will this practice enhance
services (occupational, physical, and speech therapies outcomes for the child, but it can also be a good teach-
among others) will be required. If possible, attending ing tool for residents and other students in teaching
or participating by telephone in the school placement hospitals. The PCP should model this partnership.
process is desired. Parents should be asked to envi- One of the usual learning opportunities in a teach-
sion what they see their child doing in 18 years. Tran- ing hospital is the practice of taking the child’s history.
sition to adult living, earning, and learning should Parents who have a child with frequent hospitalizations
take place from birth through adulthood, understand- may find that this process of medical history taking,
ing that the child may go through many changes although a valuable teaching tool, is painful and stress-
within that time. The physician is a role model for the ful. Recalling traumatic and difficult events in their
family for advocating and championing the needs of child’s medical history at a time when their child is
the child. As an equal partner with the family, the PCP again being hospitalized is something that some par-
may be required to advocate with other physicians, ents will resist, and they may need support when they
insurance companies, and the educational system. decline to participate in this process, if it is not critical
to the treatment.
SUPPORT DURING HOSPITALIZATION Parents often anxiously await the arrival of the PCP
Hospitalizations, whether planned or resulting from at the hospital each day. The PCP is their partner in
an emergency, are stressful times for families who their child’s care, and they look for daily insight, sup-
have a child with special health care needs. In the port, and information. PCPs should let family members
CHAPTER 9 • Partnering With Families in Hospital and Community Settings 57

know when they will be in the hospital and available to Transition from elementary to middle and then from
talk. If the physician and parents fail to connect, the PCP middle to high school may bring placement changes
should check in with the parents by telephone later in and insecurity to the child and family. Friends who
the day so that any of their questions can be answered have surrounded the child up to this point may not be
and so they can be updated on their child’s status. available to support the child; teachers and staff will
Parents must be involved in discharge planning— be new and perhaps less supportive and understand-
from a discussion of wellness and stability to the types ing of the child’s needs. Providing clinical information,
of supports they may need at discharge. If their child’s and clearly and concisely explaining the needs of the
care needs have changed as a result of this hospitaliza- child may be necessary. The PCP should check with
tion, then the team needs to ensure that the parents the parents to determine their needs and to see how
are trained on any new treatment methods or equip- smoothly the transition is proceeding.
ment, and that they have adequate support at home. Transitions occur at other junctures as well. An ill-
The PCP should assist the team, including the family ness may result in changes in the child’s ability to
members, in the discharge process. Issues such as attend school. A child with a terminal illness may dete-
school, accessibility, nursing, equipment, medications, riorate for long periods, and the school personnel may
and follow-up with the PCP and other specialists are not understand the need to adjust their demands of the
part of the process. Additionally, the care coordina- student. This circumstance may be more characteristic
tion plan developed by the PCP and the family may of middle and high schools because of the more
need to be modified. rigorous nature of the curricula. The physician’s sup-
On the day of discharge, the discharge planner or port of the family and staff within school will help
other hospital staff members usually meet with the increase understanding, reduce demands and expecta-
family to review the discharge plan. The PCP should tions, and support the child or young adult through the
review the discharge plan either on the day of dis- illness. If the illness is one that results in physical or
charge or at an office visit after discharge. The parents cognitive deterioration, then preparing the family and,
should be comfortable with the treatments, needs, and if the parents wish, the educational program, for the
follow-up appointments, especially if any changes in changes is important. These transitions can be sources
care have occurred as a result of this hospitalization. of great stress not only for the parents, but also the
siblings and extended family members. Helplessly
watching as the child’s ability diminishes over time is
TRANSITIONS difficult. Gently providing support and referrals for
Early intervention programs provide a nurturing and emotional and family support and services is critical.
supportive staff and an environment for the child with The transition to adult health care takes planning
special health care needs and the family. Services are and time for the PCP, the adolescent, and the family.
focused on the child and are family centered. Pro- Preparing the adolescent for an adult health care
grams are much less supportive when the child moves physician who may be less family centered requires
to the early childhood program within the child’s advocating, sharing of information, mentoring the
school district. Services may be fewer than they were adolescent, and relying on the trust of the family. This
in the early intervention program; family supports preparation is a lifelong process of focusing on a
may end completely or become less family centered. vision for the future and developing the skills to
For many children, this move will also mean the tran- achieve that vision. Choosing an adult health care
sition from home-based to center-based services. physician should be an informed decision of the
Parents should be made aware of these differences partnership: adolescent, parents, and PCP. Often a
and be supported during this potentially difficult tran- med-peds trained physician has the knowledge and
sition. Referrals for other services through the Title V experience to care for an adult with special health care
Program in their state and community agencies may needs originating during childhood. Preparing the
become necessary to supplement the Individuals with new physician is the responsibility of the physician
Disabilities Education Act, Part B, Preschool Grants and parents. Adolescents should be empowered to
Program. The PCP may need to check with the parents speak on their own behalf, to describe their condition,
to ascertain their needs more often than usual during to share how it affects them daily, and to seek care for
this transition. themselves. The mentoring should begin early and
The transition from the smaller setting of the early continue until such time as the PCP discharges the
childhood program to the elementary school program adolescent from care.
can be frightening for the family and child. How will
the child be accepted? How will the staff meet the FINANCIAL CONSIDERATION
child’s needs? Are the allied services going to continue The parents may face significant unpaid bills,
to support progress? Is the child placed with the best difficulties with getting insurance to pay for services,
teacher to meet the child’s learning style? These insurance companies reversing decisions, and the
questions are a few that the parents may have as they need to seek services that may be difficult to find
approach the beginning of school. During the school locally. Referrals to the state insurance program,
physical, the PCP may need to reassure the family. The Medicaid for children, or Medicaid waiver programs if
PCP may agree or disagree with the placement, but the family does not have insurance may assist families.
the support will help the family approach the beginning If the physician’s office does not accept these sources
or continuation of the program with less apprehen- of payment, then helping the family identify a practice
sion. Understanding and empathy will help the family. that does will also be helpful if the parents are not able
58 PART 1: DELIVERING PEDIATRIC HEALTH CARE

to afford the associated out-of-pocket expenses. Dis- Home (monograph), National Center for Medical
playing brochures about the state insurance program Home Implementation (medicalhomeinfo.aap.org/
and Medicaid within the physician’s office will draw tools-resources/Documents/Monograph_FINAL_
the attention of parents needing these services. Sept2010.pdf)
• Patient- and Family-Centered Ambulatory Care: A
Checklist (handout), Institute for Family-Centered
END-OF-LIFE PLANNING Care (www.ipfcc.org/advance/topics/Ambulatory-
When caring for a child who has a terminal diagnosis, Care-Key-Concepts.pdf)
the PCP must have discussions with the family at a
time other than when the child is in crisis. Included
in this meeting should be a frank discussion of the AAP POLICY
family’s wishes regarding do-not-resuscitate orders. American Academy of Pediatrics Council on Children With
(See Chapter 67, Palliative, End-of-Life, and Bereave- Disabilities. Role of the medical home in family-centered
ment Care.) early intervention services. Pediatrics. 2007;120(5):
1153–1158 (pediatrics.aappublications.org/content/
120/5/1153)
CONCLUSION American Academy of Pediatrics Committee on Hospital
Care, Institute for Patient- and Family-Centered Care.
Parents seek physicians who are able to treat them as
Patient and family-centered care and the pediatrician’s
equal partners in the care of their children. They are role. Pediatrics. 2012;129(2):394–404 (pediatrics.
looking for someone who will be nonjudgmental as aappublications.org/content/129/2/394)
long as the child is safe, well cared for, and treated
with respect. The PCP needs to coordinate the care
provided to the child with special health care needs by SUGGESTED READINGS
collaborating effectively with the various profession-
Federation of Families for Children’s Mental Health.
als involved in the child’s care. Parents will respect the Helping children with mental health needs and their
PCP who admits to not knowing but who will seek out families achieve a better quality of life. Available at:
the answer or the specialist who does know. Parents www.ffcmh.org
will respect the PCP who can provide sensitive, nur- Institute for Family-Centered Care. Resources. Available at:
turing, and supportive care. www.familycenteredcare.org/resources/index.html
Kids As Self Advocates (KASA): Teens and young adults
“. . . Families are visionaries. Their dreams are not with special health care needs speaking on our own
tied to bureaucratic limitations. Their ideas and behalf. www.fvkasa.org
hopes for their children, their families, and their The Family Village. A Global Community of Disability-
communities provide challenge, inspiration, and Related Resources. Available at: www.familyvillage.
guidance.” wisc.edu
(ELIZABETH S. JEPPSON AND JOSIE THOMAS,
ESSENTIAL ALLIES: FAMILIES AS ADVISORS,
INSTITUTE FOR FAMILY CENTERED CARE, 1995)

Chapter 10
TOOLS FOR PRACTICE
Community Advocacy and Care Coordination FAMILY-CENTERED CARE OF
• A Patient and Family Advisory Council Work Plan: HOSPITALIZED CHILDREN
Getting Started (form), Institute for Family-Centered
Care (www.ipfcc.org/pdf/PDF/advcouncil_workplan. Jerrold M. Eichner, MD
pdf)
• Creating Patient and Family Advisory Councils
(booklet), Institute for Patient- and Family-Centered With the growth of the hospitalist movement has come
Care (www.ipfcc.org/advance/Advisory_Councils. a change in the organization of inpatient services. The
pdf) patient- and family-centered medical home, or simply
medical home (MH), is an approach to providing com-
prehensive primary care to children, youth, and adults.
Engaging Patient and Family
The primary care physician (PCP) is responsible for
• Pediatric Care Plan (form), American Academy
meeting the child’s health care needs or appropriately
of Pediatrics (medicalhomes.aap.org/Documents/
arranging care with other qualified professionals. This
PediatricCarePlan.pdf)
may include hospitalists to meet the care needs of the
Practice Management and Care Coordination child while in the hospital, although many times the
• Coding for Medical Home Visits (Web page), Ameri- PCP may not be able to choose the hospitalist because
can Academy of Pediatrics (www.aap.org/en-us/ admissions to hospital are often through an emergency
professional-resources/practice-support/Coding- department or other urgent care setting. In the hospi-
at-the-AAP/Pages/Coding-for-Medical-Home- talist model, the shift of responsibility for the patient
Visits.aspx) during the inpatient stay from the MH and the PCP to
• Measuring Medical Homes: Tools to Evaluate the the hospitalist has placed on both parties a burden of
Pediatric Patient- and Family-Centered Medical responsibility to ensure the continuity of care for the
CHAPTER 10 • Family-Centered Care of Hospitalized Children 59

patient. Research indicates that ineffective communica- resources not readily available to the PCP. Communi-
tion between the 2 types of providers on many levels cation between the PCP and hospitalist prevents
can adversely affect patient care and safety. Differ- unnecessary duplication of diagnostic tests and
ences in the attitudes of community pediatricians to- facilitates consultation and a smooth transition be-
ward hospitalist programs vary widely and include tween outpatient and inpatient care.
significant concerns about communication. Successful Successful interaction among different physicians
communication between hospitalists and PCPs is an and other professionals promotes an atmosphere of
essential component of effective hospitalist medicine collegiality and mutual learning, and creates an open
and a necessary way of avoiding interruptions in and supportive professional and educational medical
patient care. The collaborative relationship between community. Communication fosters a culture of safety
these physicians ensures a smooth transition of patient and may reduce medication errors and unnecessary
care from the inpatient to the outpatient service, and medication use. It supports patient education, has the
vice versa. Support for the continuity of care facilitates potential to improve the use of chronic and preventive
a global understanding of the patient and assists in ap- medicines, addresses the needs of patients with lim-
propriate diagnosis and initiation of inpatient therapy ited resources or without an MH, helps coordinate the
and effective outpatient follow-up. This deeper under- care of chronically ill and vulnerable patients, and
standing allows each physician to consider more effec- provides greater insight in family conferences.
tively the effect of social, financial, and other factors Box 10-1 provides guidance for communication
that are unique to each patient’s personal history. between PCPs and hospitalists. A partnership in
Patient- and family-centered care recognizes that patient and family education may help prevent unnec-
important role of the family in the patient’s life. Most of essary hospitalizations and may promote patient and
the time, the child and family have established a work- family knowledge about chronic diseases, medications,
ing relationship with the PCP and the MH for the care and disease triggers. Many concerns regarding patient
of the child. They play an integral role in the health care safety, such as medication reconciliation, follow-up of
team and participate in health care decision making. outstanding laboratory results, or the need for addi-
Temporarily transferring that relationship, even for a tional outpatient clinical tests or procedures, can be
short time as an inpatient, is important in the continuity addressed by establishing effective and collegial com-
of family-centered care while the child is hospitalized. munication among physicians. Both the PCP and the
Including families in decision making and keeping them hospitalist are advocates for the patient. Differences in
informed of their child’s progress are as important in approach to diagnosis and treatment should be dis-
the hospital as they are in the outpatient setting. Family- cussed in an open and mutually respectful manner. An
centered hospital rounds enhance the exchange of in- optimal plan is a collaborative one; however, ulti-
formation and encourage families in decision sharing. mately, the attending physician of record, the hospital-
ist, will be responsible for making decisions about the
hospital stay. Any differences should be settled before
COMMUNICATION BETWEEN PRIMARY discussion with the family. Involving the patient and
family in these care decisions is an important and
CARE PHYSICIAN AND HOSPITALIST necessary part of the care collaboration. Effective com-
The PCP’s knowledge and insight are critical in pro- munication and handoff also increases physicians’
viding the best care for the patient. The hospitalist has efficiency and satisfaction in their own practices.
the skills to provide care for the hospitalized child that Transitions in patient care when a hospitalist as-
the PCP does not and is the one to make appropriate sumes the care of a PCP’s patient and vice versa, such
use of diagnostic tests, consultations, and treatments as inpatient hospitalization and discharge, carry the
in the hospital. The communication between the risk of losing patient information and decreasing com-
PCP and the hospitalist at the time of admission munication. Similarly, subspecialty consultations, pro-
should include the pertinent medical information (past cedures, and therapeutic suggestions can be lost to
history, prior investigations, consultations, prior ther- the PCP if not adequately communicated by the hospi-
apeutic interventions, etc) as well as the wishes and talist. Thus, in addition to collegial communication,
plans of the family. This information often can be pro- continuing education for hospitalists, subspecialists,
vided only by the patient’s PCP. This is particularly and PCPs in physician–physician communication and
important in the care of children with chronic disease physician–patient communication improves rapport, a
and special health care needs. These factors are in- necessary component of the therapeutic relationship
strumental in preventing interruptions in care, making between the members of this triad.
critical decisions such as end-of-life care, suggesting Methods of communication are varied and often
social service interventions, and recognizing the value tailored to a particular service and patient population,
of specialty services for patients with special health although most PCPs prefer to communicate with hos-
care needs. Similarly, hospitalists may have knowledge pitalists by telephone at admission and discharge.
of repeat hospitalizations and access to information Other options include faxes, transcribed dictation, and
available in inpatient medical records. Hospitalists e-mail. It would be optimal to agree on a method of
have the opportunity to use the services of many ancil- communication prior to or during the hospitalization,
lary providers within the hospital system. For exam- but this may not be practical, so a standard method of
ple, hospitalists caring for children may have access to communication for that hospital program should be
information about social services and community known and adhered to.
60 PART 1: DELIVERING PEDIATRIC HEALTH CARE

BOX 10-1 Guidance for Communication Between Primary Care Physicians, Hospitalists,
and Families
• Communication should, above all, promote quality of • PCPs should maintain communication with patients and
care and patient safety. their families who are on a hospitalist service and are
• Communication between the hospitalist and primary encouraged to visit the child in the hospital, especially a
care physician (PCP) should always occur at the time child with a chronic condition or special health care
of admission, at discharge or transfer to a different needs. The PCP should discuss any medical advice with
institution, and during the hospitalization at the time the hospital team before discussion with the family.
of significant events and procedures (depending on • The treatment plan and follow-up suggestions are an
physician preferences). essential part of the communication about transfer of
• During hospitalization, the child’s family should care at discharge. The patient and family should par-
participate in major decisions such as those regarding ticipate in the generation of the health care plan, have
major procedures, transfers to other institutions, and ownership of it, and document their understanding of
changes in level of care. Family-centered hospital it. The use of care coordinators can be extremely help-
rounds are an effective method of encouraging this ful in that process.
communication. • Hospitalists, subspecialists, PCPs, and families share in
• Hospitalists, PCPs, and subspecialists should be easily the responsibility to ensure adequate follow-up after
accessible to each other by a mutually agreed upon discharge, including establishing follow-up appoint-
method of communication or based on the model for ments, informing patients of outstanding clinical test
that institution, be it by phone, e-mail, sharing results, and educating patients about the necessity for
electronic medical record notes, or another method. follow-up care.

Derived from Eichner JM, Cooley WC. Coordinating the medical home with hospitalist care. Hosp Pediatr. 2012;2(2):105–108.

TRANSITION OF CARE AT DISCHARGE who should be contacted and by what method during
Interventions that increase patient satisfaction and that critical period between discharge and the follow-
improve safety after discharge are essential for hospi- up appointment. This can be provided by a care coor-
talist services. These interventions may include identi- dinator as part of the hospital team.
fying a specific individual from the hospitalist team (a The failure to relay information about clinical test
care coordinator) to contact patients after discharge, results that are outstanding at the time of discharge is
identify patients who have missed follow-up appoint- a problem documented in the medical literature and
ments, and track pending clinical results. For some identifies an important patient safety issue. By defini-
services, providing follow-up telephone calls from a tion, hospitalist services have a large volume of poten-
pharmacist has helped answer questions and resolve tially actionable test results pending at the time of
medication-related problems. First and foremost, discharge and may not have an established system for
communication should promote patient safety. The tracking these results or providing follow-up informa-
treatment plan must include preparations for follow- tion to PCPs or patients. Fortunately, an inherent
up after discharge and a method of communicating strength of hospitalist services is their ready access to
outstanding test results. patient information through integrated hospital infor-
The importance of a controlled transfer of patient mation systems and their ability to coordinate care for
information after discharge cannot be overempha- patients with other specialists. These systems need to
sized. The hospitalist and the PCP share responsibility be used to enable and promote collaboration and
and liability for patient care. A practice that focuses communication between hospitalists and community
first on the best interests of the patient will ultimately physicians. Thus, there needs to be a system in place
benefit the physicians involved and help improve the to ensure prompt, reliable, and confidential transfer of
quality of care after discharge from the hospital. The patient information between the hospital and PCP’s
physician’s legal duty to provide follow-up care is well medical record systems.
established. In the case of hospitalists and PCPs, this
responsibility is shared. The patient and family must CONCLUSION
leave the hospital with the following necessary tools: The presence of a skilled pediatric hospitalist on an
an understanding of the diagnosis and inpatient treat- inpatient service provides a unique opportunity for
ment, what tests results are still pending, a recogni- teaching many members of the medical team. It is an
tion of the need for any ongoing medical therapy or ideal arrangement for direct evidence-based clinical
routine follow-up care, and a follow-up care plan with teaching of medical students and residents, as well as
an identified PCP who has timely, adequate, and ac- providing immediate interaction with nursing staff
curate information about the hospitalization, includ- and other ancillary staff. There are many benefits to
ing any pending laboratory or other clinical test including the family in these efforts. A pediatric
results. There also should be a clear understanding by hospitalist presence in the hospital promotes the
the patient and family, hospitalist, and PCP regarding consideration of pediatric concerns at many levels and
CHAPTER 11 • Ethical and Legal Issues for the Primary Care Physician 61

provides a pediatric focus during administrative and


peer-review hospital committee activities. In addition, Chapter 11
the pediatric hospitalist has the opportunity to im-
prove the quality of care provided to hospitalized
ETHICAL AND LEGAL ISSUES
children by implementing and overseeing the use of FOR THE PRIMARY CARE
evidence-based diagnosis and treatment guidelines
published by the American Academy of Pediatrics and PHYSICIAN
other professional organizations. They may also con- Lainie Friedman Ross, MD, PhD; John D. Lantos, MD
duct other quality improvement activities, such as
reducing nosocomial infections and adverse reactions
to medications. The hallmark of clinical ethics in the setting of general
internal medicine is its focus on the competent adult
TOOLS FOR PRACTICE patient. In the physician–patient dyad, the patient is the
Engaging Patient and Family decision maker, and the focus is patient autonomy. If
• Building Your Care Notebook (Web page), American the patient becomes incompetent, the focus remains on
Academy of Pediatrics (medicalhomeinfo.aap.org/ patient autonomy because the surrogate is supposed to
tools-resources/Pages/For-Families.aspx) be guided by the principle of substituted judgment; that
• Emergency Information Form for Children with is, to make decisions based on what the patient would
Special Needs (template), American Academy of have chosen if able to do so. In contrast, the foundation
Pediatrics (www.aap.org/advocacy/blankform.pdf) of pediatric clinical ethics is a triad that includes the
• Hospital Stay Tracking Form (file archive), National physician, the child, and his or her parent or parents
Center for Medical Home Implementation (medical or guardians. In the triad, the legally entitled decision
homeinfo.aap.org/tools-resources/Documents/ maker is not the patient. Historically, parents were
Hospital%20Stay%20Tracking%20Forms.zip) legally empowered to make virtually all decisions for
• Pediatric Care Plan (template), American Academy their children. All children were presumed to be incom-
of Pediatrics (medicalhomes.aap.org/Documents/ petent, and their opinions were not sought. The guid-
PediatricCarePlan.pdf) ing principle was the best interest of the child standard.
However, in the past 2 decades, sociopolitical develop-
Practice Management and Care Coordination ments around the world have increased the child’s legal
• Coding for Medical Home Visits (fact sheet), Ameri- authority and given the child, particularly the older
can Academy of Pediatrics (www.aap.org/en-us/ child, his or her own voice (autonomy). Some people
professional-resources/practice-support/Coding- argue that mature children (specifically adolescents)
at-the-AAP/Pages/Coding-for-Medical-Home- should be allowed to make their own decisions without
Visits.aspx) their parents’ permission, even without their parents’
awareness. This issue is an area of tension and contro-
versy because reasonable people disagree about the
AAP POLICY degree to which children’s values and choices should
American Academy of Pediatrics Steering Committee on direct their health care.
Quality Improvement and Management and Committee
Much of the literature of pediatric ethics focuses
on Hospital Care. Principles of pediatric patient safety:
reducing harm due to medical care. Pediatrics. 2011;
on the extreme cases: the premature infant who weighs
127(6):1199–1210 (pediatrics.aappublications.org/ 600 g, the child who has leukemia whose parents refuse
content/127/6/1199) chemotherapy, or the child whose sibling needs a kid-
ney transplant. The unique issues that pediatricians in
primary care practice face have not received compara-
SUGGESTED READINGS ble adequate scholarly attention or rigorous analysis.
American Academy of Family Physicians, American This circumstance may be because the ethical issues
Academy of Pediatrics, American College of Physicians, that arise in the daily practice of primary care pediat-
American Osteopathic Association. Guidelines for rics are usually not concerned with decisions about
Patient-Centered Medical Home (PCMH) Recognition
illnesses that are immediately life threatening. Never-
and Accreditation Program. 2011. www.acponline.org/
running_practice/delivery_and_payment_models/pcmh/
theless, pediatricians in primary care practice often
understanding/guidelines_pcmh.pdf. Accessed face decisions that may have profound effects on a
May 27, 2015 child’s physical and mental health and on many emo-
American Academy of Pediatrics Committee on Hospital tional, spiritual, and economic elements of family life.
Care, Institute for Patient- and Family-Centered Care. Societal standards about difficult moral choices in
Patient- and family-centered care and the pediatrician’s medicine have evolved through a dialogue among
role. Pediatrics. 2012;129:394–404 patients, patient advocacy groups, pediatricians and
Eichner JM, Cooley WC. Coordinating the medical home other physicians, bioethicists, professional societies,
with hospitalist care. Hosp Pediatr. 2012;2:105–108 and the various branches of government. Legal dis-
Percelay JM; American Academy of Pediatrics Committee
putes have been especially important for issues such
on Hospital Care. Physicians’ roles in coordinating care
of hospitalized children. Pediatrics. 2003;111(3):707–709 as do-not-resuscitate orders, brain death, and treat-
Percelay JM, Strong GB; American Academy of Pediatrics ment withdrawal. The controversies and disputes that
Section on Hospital Medicine. Guiding principles for arise in primary care seldom lead to legal actions.
pediatric hospitalist programs. Pediatrics. 2005;115(4): When they do, lower courts, rather than appeals
1101–1102 courts, often decide these disputes. Lower-court
62 PART 1: DELIVERING PEDIATRIC HEALTH CARE

decisions are seldom published and do not establish which Alan will agree to apply salicylate without
precedent. As a result, in many cases, neither statu- parental reminders at home. If he fails to do so, then
tory law nor case law is directly applicable to the they will return for cryotherapy. In some cases, how-
issues at hand. ever, their positions are intractable, and the question
This chapter presents common scenarios that arise remains, “Who should have the final word?” The
in primary care pediatrics and that raise thorny ethical American Academy of Pediatrics (AAP) Committee on
issues. Some of these issues are procedural—that is, Bioethics published recommendations regarding the
they require a decision about who should decide. Oth- roles of parents and children in decision-making for
ers are substantive—that is, they require consideration children. The committee recommends that the resolu-
of what the right decision is and what constraints tion of conflicts between parents and children depends,
should apply to any decision maker. In some cases, in part, on the child’s decision-making capacity. For
legal constraints exist on decision making; in others, the child whose decision-making capacity is devel-
the law allows the physician wide latitude. The focus is oped, the committee recommends that the child’s
on situations in which the law is less clear because decision be final. For the child whose capacity is devel-
many applicable laws vary from state to state and oping, such as Alan, the committee urges the physician
because these situations require that pediatricians to try to achieve consensus. If the child and parent
make their own moral judgments. cannot reach consensus, then the AAP supports third-
party intervention. Although some people may find
this approach reasonable, others might find it hope-
CASE STUDIES AND ANALYSIS lessly cumbersome. What third party would be avail-
Case 1 able in a busy pediatric office? Furthermore, some
parents may be intolerant of third-party scrutiny.
Alan, an 8-year-old boy, comes to your office because These parents may find even the physician’s scrutiny
he has multiple warts on his hands. The school is con- an inappropriate threat to their legitimate parental
cerned that he is contagious, and he is not allowed to authority.
participate in contact sports until his condition is treated What are the pediatrician’s options if consensus is
or, at a minimum, is under treatment. You explain to not achieved? If the pediatrician sides with the parent,
Ms A, his mother, and to Alan that many therapeutic then the protesting child will receive a painful treat-
options are available, including cryotherapy in the phy- ment. What if the child resists? Such actions convey to
sician’s office, a salicylate-based therapy or duct tape children the problematic message that their opinions
that is to be applied nightly, and watchful waiting. Ms A do not matter. On the other hand, to side with children
requests that you give Alan the in-office treatment. Alan on the grounds of developing maturity places parents
says that he does not want any painful treatment and in an awkward position because they must now buy
will apply the ointment nightly. What do you do? the medication and apply it to their child’s hands
nightly. What if Ms A resists and says, “OK, doctor, at
Discussion what time will you come by to place the medicine on
On the surface, the case does not appear to involve an Alan’s hands?” Her response demonstrates the bind
ethical issue because Alan, his mother, and the pedia- that physicians have in their relationships with their
trician all agree that Alan needs treatment. However, patients. The challenge for professionals is to be car-
many very different treatments are available. Each ing without taking unnecessary control of the life of
approach has different benefits and burdens, and the the child for whom they do not and cannot take full
evidence for the superiority of any one treatment is not responsibility.
strong. The child prefers one balance of the benefits In a case such as this one, it appears reasonable
and burdens, and the parent prefers another. Their dif- that parents should have ultimate decision-making
ferent values, when brought to play on the therapeutic authority. The risks of either treatment are low,
options, have created a conflict between the parent as are the burdens of therapy, and the child is at an
and child. The pediatrician may not have a strong age at which it is unlikely that he would be capable
opinion about which option is best. of taking responsibility for his own medication
The first step in any such conflict is further discus- regimen. Still, physicians have the right, and the ob-
sion. Understanding why Ms A prefers the liquid nitro- ligation, to involve children in the decision-making
gen therapy would be valuable. Issues to be weighed process and to explain to them why their wishes and
include efficacy, cost, convenience, attendant risks, requests are being overridden, even if their parents
and compliance. Ms A’s choice is pragmatic; she sees complain that this action threatens their autonomy
the liquid nitrogen as being more reliable than other and authority.
treatments. Ms A is afraid, based on experience, that
her child will be poorly compliant with the nightly Case 2
salicylate-based treatment. She does not want to have Betty, a 15-year-old girl, comes into the physician’s
a nightly battle. Alan has had liquid nitrogen therapy office for a yearly physical. Her examination is normal.
before and finds it quite painful. He promises his She attends St. Mary’s High School, where she is on
mother that he will comply with the nightly ointment the honor roll. She is popular with her friends and tells
applications. you that she has recently fallen in love with Bob. She
In many such discussions, parents and children will says that she is not sexually active yet, but she asks for
come to an acceptable compromise. For example, birth control pills. She also asks that you not tell her
Ms A may agree to a trial of home therapy during parents because she knows that her sexual activity is
CHAPTER 11 • Ethical and Legal Issues for the Primary Care Physician 63

against their moral and religious beliefs, and she fears might be to encourage her to talk with the pediatrician
they will prohibit her from seeing Bob. confidentially. Ms V and Vicky may be receptive to this
idea. This approach does not resolve whether Vicky
Case 3 should receive the treatment that her mother requests
Vicky, a 15-year-old girl, is brought to your office by but that Vicky rejects. However, it may give the pedia-
her mother, Ms V, who states that she knows that her trician an opportunity to discuss with Vicky the most
daughter is sexually active, and she wants her to get likely outcome of adolescent pregnancy: single parent-
long-term contraception to avoid pregnancy. Ms V is hood and its attendant responsibilities. The pediatrician
a single mother who became pregnant with Vicky may try to help her see that pregnancy should be a
when she was 14, and she wants to protect her daugh- positive decision (ie, I want to be a parent) and not a
ter from the hardships she faced. Vicky acknowledges passive decision (ie, it will make my partner happy). The
that she has a boyfriend, Tom, and is sexually active. pediatrician may want to encourage Vicky to get coun-
She states that he wants her to get pregnant, although seling to help her sort out the complicated issues that
she is ambivalent. She does not want contraception she is facing.
because she fears her boyfriend will leave her. Although parents generally have the legal right and
responsibility to make medical decisions for their ado-
Discussion lescent children, treatment related to reproductive
Current data indicate that more than 51% of high health is an exception under the special consent stat-
school girls and 61% of high school boys have had utes. These statutes vary by state and in their scope,
sexual intercourse. Almost 850,000 American adoles- and may apply differently to physicians in different
cents become pregnant every year. Many teens do not practice settings, but they all give adolescents the legal
seek medical or gynecologic care or contraception for autonomy to seek and consent to the diagnosis and
months or even years after they initiate sexual activity. treatment of drug and alcohol abuse, contraceptive
Most teens who become pregnant are unmarried, and counseling, and the procurement of contraceptives.
most of their pregnancies are unplanned. More than Some states even allow minors to consent to abor-
60% of these girls will decide to take the pregnancy to tions without disclosure or consent from their parents.
term, and virtually all of these teenagers will take on The statutes were designed to encourage adolescents
the responsibilities of parenthood. Pregnant adoles- to seek health care for problems they might deny or
cents and their fetuses have a higher incidence of ignore or for which they might delay seeking treat-
medical complications than older women. Their chil- ment if they had to get parental permission. Pediatri-
dren do not fare as well psychosocially as do children cians should know the specifics of laws in their state.
of adult mothers. Thus, one can say both that Betty is Although such statutes allow physicians to provide
acting unusually responsibly for a 15-year-old and that this care, they do not compel them to do so. Thus,
Ms V’s concerns are well founded. a pediatrician facing a patient such as Betty has the
Both these requests should be interpreted as an legal latitude to make a moral decision. However, even
opportunity for dialogue. The first step may be to a pediatrician who thinks that prescribing contracep-
assess the voluntariness of Betty and Vicky’s sexual tion is inappropriate for Betty should inform her that
(or potential) sexual activity. The pediatrician should she has a right to obtain contraception and should
ascertain whether Bob and Tom are classmates and of refer her to another provider.
similar age, or whether they are much older than Betty The purported purpose of the specialized consent
and Vicky, with the latter possibility raising concerns of statutes is laudable: to encourage early, responsible
sexual predators. Even if they are of similar age, differ- sexual health care for adolescents. The pragmatic jus-
ent states have different laws about when minors can tification is compelling: Given that adolescents can be
legally consent to sexual activity and different laws and frequently are sexually active even when birth
regarding abuse, statutory rape, and state reporting control and other sexual health services are relatively
requirements. Assuming that the pediatrician is con- inaccessible, they should be given the opportunity to
vinced that Betty and Vicky are not in abusive or non- be responsible for their sexual activity. However,
voluntary relationships, the pediatrician should discuss whether the pragmatic justification is sufficient to jus-
with each teenager the consequences of her decision. tify empowering all adolescents to consent to or
Betty should be commended for seeking to be sexually refuse all types of reproductive health care is unclear.
responsible, but she must also be made aware of the Rather, both moral and pragmatic considerations
risks of sexual activity, the efficacy of the various meth- might lead one to empower Betty and to disempower
ods of contraception, and the fact that abstinence is the Vicky. In both cases, the goal would be to minimize the
only 100% effective way to avoid pregnancy. The pedia- chances that either girl would get pregnant.
trician should discuss with Betty what she might do if Three moral arguments can be made in these situa-
she were to get pregnant even though she has been tions that would lead to 3 different decisions. First, we
taking the pill. Other questions that the pediatrician might base these decisions on a pure best-interest
should ask are whether Betty has discussed with Bob standard. That is, we might simply judge that it is not
what they would do if she were to get pregnant, and in either Betty or Vicky’s best interest to get pregnant.
how her deception will affect her relationship with her Thus, we would make the decision that best advances
family. Vicky’s physician may want to address the issue these interests and prescribe contraceptives for both.
of whether Vicky finds this three-way conversation This decision can be framed as a way of preserving
embarrassing, perhaps suggesting to Ms V that the their future autonomy; that is, granting autonomy to
best way to protect Vicky from an unwanted pregnancy adolescents regarding their sexual activity when they
64 PART 1: DELIVERING PEDIATRIC HEALTH CARE

are 15 may be autonomy-restricting over a lifetime. As that is associated with the separation is often
with many decisions that children make, we might expressed as behavioral problems in the child, and the
justify restricting a child’s autonomy now to give pediatrician should be prepared to provide support
her greater lifetime autonomy. Second, one might ar- or to refer for appropriate counseling.
gue that these teens have the right to make decisions A crucial question for Ms C is, “How will the sur-
for themselves in these matters. Following this view, reptitious drug testing help?” A test that comes back
we would confidentially prescribe contraceptives for negative does not prove that Charles is not using
Betty but not for Vicky. Third, one might argue that drugs. False-negative tests can occur because the half-
parents have a valid third-party interest in their chil- life of many drugs is less than 24 hours and because
dren’s development and activities, even when the urine drug testing applies to only some of the sub-
children become teens and achieve a significant level stances more commonly abused. Serum testing is
of competency. To act on these interests and to par- more sensitive but can only be used for specific drugs,
ticipate in their children’s moral development, they so you would need a list of the drugs that are sus-
need to have the opportunity to try to inculcate their pected. If the test is positive, it indicates recent use but
beliefs through rational discourse. They can accom- is not diagnostic of substance abuse. If the screen
plish this task only if they are aware of what their teens comes back positive, then Ms C will need to decide
are doing. This argument acknowledges the child’s how she will approach Charles. Charles is presently
decisional capacity, but it also asserts that decision- not trusting of adults who have betrayed him. Surrep-
making capacity is necessary but may not be sufficient titious testing will increase his distrust.
to grant an adolescent health care autonomy. In this The preferable course of action would be to ask
case, one might prescribe contraception as requested Ms C to give you permission to establish a confidential
by Vicky’s mother but not for Betty, whose parents are relationship with Charles. You might explain that this
not aware of their daughter’s intentions. approach is likely to be much better for Charles in the
This range of responses is consistent with both the long run. Most parents will likely be willing to accept
specialized consent statutes and the AAP position on this advice. If Ms C gives you such permission, then
consent, permission, and assent. Teens are empow- you should arrange to meet with Charles privately and
ered to obtain contraception, but pediatricians are explain the confidential nature of the relationship. You
not required to provide such treatment. Parents are should be honest about when confidentiality would be
empowered to request medical treatment that they broken–specifically, in cases in which you believe that
deem to be beneficial to their child, but pediatricians Charles is a danger to himself or others.
are not required to provide it. Thus, pediatricians The opportunity to speak confidentially to his physi-
must make a personal moral decision about how they cian may be what Charles needs to help him cope with
will respond with one major caveat: When a pediatri- the turmoil at home. Charles may be willing to discuss
cian is not willing to provide a treatment that is a whether he is abusing drugs and may be willing to be
valid medical option (eg, contraception to minors), tested for drugs as well. However, many other issues
the pediatrician does have an obligation to refer need to be addressed with Charles that are even more
the patient and family to another physician who is compelling. Is he suicidal? Is he engaging in any other
willing to do so. risky behaviors (of which drug use is but one dimen-
sion)? Is he depressed? Is he willing to seek counseling
Case 4 or begin antidepressant medication, if recommended?
Ms C calls you the day before she is scheduled to Are there any adults whom he trusts?
bring in her 14-year-old son Charles for his yearly Despite your suggestion, Ms C may still demand
physical examination. She tells you that Charles was that you test Charles for drugs. In fact, situations oc-
previously an A student but now is getting Cs and cur in which the grounds for suspecting drug abuse
Ds. The family is going through turmoil because are compelling, and teens who are using drugs may
Mr C moved out of the house 3 months ago to live not be in a position to assess the risks and benefits of
with his pregnant girlfriend. Ms C admits to being testing or treatment. Pragmatically, however, testing
depressed and cries easily but has not sought outside Charles would be difficult without his cooperation un-
help. Charles has been withdrawn and often comes less he was deceived about the purpose of specimen
home late and refuses to tell his mother where he has collection. Pediatricians (similar to other physicians)
been. She fears that Charles is using drugs and would should not deceive their patients. Thus, if Charles’s
like you to screen him without telling him what you mother insists on testing, then the pediatrician should
are doing. insist on informing Charles of the nature of the test.
Ideally, Charles should voluntarily agree to testing. In
Discussion fact, some states prohibit testing a minor for drugs
Ms C’s request is a call for help. Ms C and Charles need without the minor’s consent. There are exceptions for
counseling regardless of whether Charles is using urgent and emergent care, but they would not apply in
drugs. Ideally, both of his parents need to realize how the case presented. Even where legally permissible,
their actions and emotions are affecting their son’s involuntary testing should be performed only if rea-
behavior. Charles needs parental supervision at a time son exists to doubt his competency or if information
when both parents are disengaged for different rea- exists that strongly suggests Charles is at high risk for
sons. Each year, more than 1 million children experi- imminent danger from his substance abuse. Even
ence the divorce of their parents. The parental conflict if testing is not voluntary, the disclosure that testing
CHAPTER 11 • Ethical and Legal Issues for the Primary Care Physician 65

will be performed will help maintain trust and keep associated with the disease that is diagnosed. Early
the door open for future communication. Ms C has diagnosis may affect parent–child bonding adversely if
a moral obligation to care for her son and to determine the parents hold back on emotional investment be-
what medical information she needs to do so. How- cause they fear their child will die. In older children, it
ever, this obligation does not give her the right to de- may adversely affect the child’s self-image and self-
mand that you lie to him about what you are doing or esteem. Finally, in the United States, obtaining
to violate his right to privacy without compelling appropriate health insurance for the child and even
evidence that it is in his medical best interest. for healthy siblings was complicated by insurance dis-
The physician also should use this appointment and crimination against families in which a preexisting
the discussion about drug testing as an opportunity to condition was documented. However, the passage and
encourage Charles and Ms C to seek counseling and to implementation of the Genetic Information Nondis-
give Charles anticipatory guidance about any and all crimination Act (GINA) in 2008 ought to make such
risky behaviors in which he is involved. Pediatricians concerns obsolete. Parental expectations for the future
should be aware that in recent years, a number of com- may also be limited unnecessarily. For conditions in
panies have begun to market home drug-testing prod- the first category in which early testing has not been
ucts directly to parents. If Ms C cannot get you to test shown to improve morbidity or mortality, the risk–
Charles, she may test him at home without having full benefit balance of presymptomatic testing will depend
capacity to interpret the results. As such, it behooves on the values and needs of each family. In such situa-
the pediatrician to work with Ms C to get her to agree tions, parental choices should be respected. For condi-
with the plan of action. tions in the second category for which clear evidence
exists that early testing might reduce morbidity and
mortality, parental discretion may be limited by medi-
Case 5 cal neglect statutes. In these cases, a pediatrician might
Mr and Mrs D are the proud parents of David, a choose to report a case to child protective services.
well-appearing 6-week-old boy. During their first Then, a judge would decide whether to order testing.
well-baby visit, you learn that Mr D had retinoblas- The value of presymptomatic testing in the second
toma as a child and had his left eye removed. You category is to prevent serious morbidity and mortality.
recommend genetic testing to determine whether Because articulating a compelling argument to explain
the child is at risk. Mrs D states that they were of- why children should not be tested in these circum-
fered such testing in utero and that they refused and stances is difficult, wide consensus exists that children
still refuse genetic testing. in families known to carry such genes should be
tested. Also assumed is that parents are the child’s ap-
Discussion propriate decision makers. The question is whether, if
Retinoblastoma may be inherited as an autosomal parents refuse testing or diagnostic workups, physi-
dominant gene, or it may develop spontaneously. Given cians should feel compelled to seek state permission to
that Mr D had retinoblastoma, David has a 50% risk for override their refusal.
developing retinoblastoma. Before the discovery of the In such a case, the pediatrician needs to engage
gene for retinoblastoma, children born into families Mr and Mrs D in dialogue to try to determine why they
that had a positive history for retinoblastoma under- are refusing testing. They may have refused genetic
went ophthalmologic surveillance every 3 months. The testing in utero because amniocentesis entails risks for
value of the genetic information is that if David tests morbidity and mortality and, assuming that a positive
negative for the gene, then he can avoid frequent eye test would not have led them to terminate the preg-
examinations. If he tests positive, then he will need to nancy, would not have offered any tangible benefits.
undergo frequent screening to enhance the likelihood However, genetic testing for the gene for retinoblas-
of early detection. If detected early, then the prognosis toma in a 6-week-old child is a simple blood test, and
for survival and vision is improved. the result clarifies whether the child needs frequent
Testing young children for early-onset conditions ophthalmologic follow-up. Mr and Mrs D may con-
encompasses 2 very different categories: conditions tinue to refuse testing because of lack of knowledge,
such as Duchenne muscular dystrophy, for which fear of stigma or discrimination, or fear that this pro-
early (presymptomatic) diagnosis and treatment do cedure may interfere with obtaining insurance, par-
not affect the course of the disease; and conditions ticularly if either parent is looking for a new job, which
such as retinoblastoma, for which early diagnosis and may include a change in insurance.
treatment may improve treatment or even save lives. What should be done if Mr and Mrs D continue to
In the first category of early-onset conditions, the refuse testing? Ideally, knowing David’s genetic status
value of presymptomatic diagnosis is to help avoid would be valuable, but as long as Mr and Mrs D are
delay in diagnosis when early symptoms are nonspe- compliant with frequent surveillance, their decision is
cific, to target surveillance screening more accurately, neither abusive nor neglectful. The eye examinations
to allow parents to prepare for a child who will have themselves are minimally invasive, although young chil-
special needs, and to give parents information to use dren may require sedation. Physicians should respect
in their reproductive planning. On the other hand, this decision but realize that it adds the additional
early diagnosis may be detrimental in a number of responsibility that they ensure that David does get
ways. The vulnerable child syndrome has been shown appropriate quarterly examinations. If Mr and Mrs D
to cause morbidity that may be even greater than that refuse or fail to comply with quarterly ophthalmologic
66 PART 1: DELIVERING PEDIATRIC HEALTH CARE

examinations, then this failure is neglectful, and they although wide interpretation may exist as to what
should be reported to the appropriate child protection degree of urgency, likelihood of harm, or magnitude
authorities. of harm may justify overriding parental rights. Thus,
parents whose religious beliefs lead them to oppose
Case 6 blood transfusions should not be permitted to refuse
Ms F delivered Frances, a healthy full-term infant, blood for their child in a life-threatening situation.
24 hours ago. Ms F is a very well-informed parent, and They may, however, refuse in situations that are less
she requests that Frances not receive either vitamin K directly life threatening. Newborn screening does not
or hepatitis B vaccine because she does not want to meet the criteria of an imminent risk for immediate
put Frances through any more discomfort than the danger because the probability of harm is remote.
birth process. You come to draw the newborn screen Each of the conditions included in the newborn screen
for phenylketonuria and other metabolic conditions occurs in fewer than 1 in 1,000 children. Some of these
before discharge, but she refuses. She agrees to re- conditions may be diagnosable clinically; some may
consider and will take the card to her private pediatri- never manifest clinically. A parent who refuses new-
cian, whom she plans to see in 2 days. You suspect that born screening is taking a very small, albeit serious,
she will again refuse newborn metabolic screening. risk. Their refusal should be respected.
How should you respond? Nevertheless, physicians should educate parents
who refuse screening so that they understand why
Discussion physicians believe that the benefits greatly outweigh
Traditionally, the conditions screened for with the the risks. Most parents will then accede to screening.
Guthrie card were rare diseases for which early treat- In Maryland, where testing is voluntary, fewer than
ment would reduce morbidity and mortality. In 1968, 1 parent in 1,000 refuses testing for newborns which
the World Health Organization enumerated 10 criteria is less than the number of children not tested because
for evaluating screening programs, including that the of lost and improperly obtained specimens.
disease must represent an important health problem Given the experience in Maryland, one might ask
for which an accepted treatment exists that can prevent whether parental permission should be required for
most or all of the morbidity or mortality associated with newborn screening. The arguments for seeking paren-
the condition; that the screening test be simple and tal consent for newborn screening are twofold. First,
inexpensive and the follow-up confirmatory testing procuring parental permission for newborn screening
highly accurate; that a system be in place to ensure is a symbol of respect for the family—respect that is
quick communication of results to relevant parties; and well placed, given that families are the primary source
that the cost of case finding, diagnosis, and treatment of childrearing and given that families, and not the
be economically balanced in relation to expenditures state, will bear the greatest costs if diagnosis is de-
on medical care as a whole. More recently, newborn layed. Second, by requiring consent, parents must be
screening programs are expanding, in part as a result educated about the purpose and limitations of screen-
of the development of tandem mass spectrometry and ing, which may give them incentive to follow up on
advances in gene chip technology, which allow for the abnormal screening results. Knowledge of negative
detection of numerous conditions, not all of which meet test results can be reassuring to parents, particularly
all of the World Health Organization criteria. those who have personal knowledge of any of the con-
Historically, there was wide variability in the number ditions for which their infant is being tested.
of conditions included in newborn screening panels. In The major benefit of not requiring consent is to sim-
2005, the American College of Medical Genetics and plify the process of screening. Obtaining parental per-
Genomics (ACMG) and the Human Resources and Ser- mission for newborn screening can be time-consuming.
vices Administration (HRSA) recommended a uniform In this day and age, physicians are more and more
panel including 29 primary and 25 secondary targets. pressed for time. In some cases, they may not have time
This panel was endorsed by the Secretary Advisory to seek parental consent, and newborns may suffer as a
Committee on Heritable Disorders in Newborns and result. A related argument is that the consent process for
Children. Today all states in the United States offer the newborn screening is perfunctory. Neither argument
uniform panel and some offer additional conditions as morally justifies circumventing the consent process, al-
well. In the United States, 48 of the 50 states have though the practicalities may make true informed con-
mandatory universal newborn screening programs. sent impossible. If each condition would only require a
Although screening is characterized as mandatory, in minute of explanation, consent might take more than an
actual practice, parents can and occasionally do refuse hour with expanded screening panels. Given the public
testing. However, they generally are not asked for per- health value of many of the conditions screened for, the
mission, and therefore, to refuse, they must be informed goal of the consent process for newborn screening
and proactive. Most parents (and physicians) are un- should not be to fully inform parents of each condition,
aware of the parents’ right to refuse. but rather to inform parents of the general purpose of
Mandated medical interventions, whether diagnos- population health screening, which is to find individuals
tic or therapeutic, override important parental rights. at risk for conditions for which early intervention re-
Generally, the state should not interfere in the medical duces morbidity and mortality. For most parents, this
decisions that parents make for their children. To do explanation will be adequate. For parents who want
so undermines the family unit. The only exceptions to additional information, pamphlets should be available,
this rule are situations in which parental decisions and referrals for more extensive counseling should be
expose the child to serious morbidity or mortality, possible. In rare cases, parents will choose to opt out.
CHAPTER 11 • Ethical and Legal Issues for the Primary Care Physician 67

Given the low probability of a positive test, these par- receive no vaccinations. Risk factors for being under-
ents should be counseled, but their refusals should be immunized include minority status, poverty, living in an
respected unless prohibited by state law (eg, Nebraska). urban area, living in a household with more than 3
children, and low maternal education. In contrast, chil-
Case 7 dren who have no vaccinations tend to be white
Tina is a 4-year-old new patient. Her parents are seek- children whose parents are married, older, and wealth-
ing to enroll her in school for the first time. You ask for ier or children in religious communities whose parents
Tina’s immunization records, and her parents state have a religious objection to immunization. They often
that she has received no immunizations. They request live in communities of like-minded families. The cluster-
that you write a school note excusing their daughter ing of these families decreases herd immunity and
from vaccination based on religious beliefs. On fur- makes these communities more susceptible to out-
ther questioning, you discover that the parents do not breaks. In September 2005, 4 children in an Amish
really have a religious objection to immunizations but community in Minnesota were found to have polio, a
have refused immunizations because they have heard disease that had not been seen in the United States
that these vaccines may cause seizures or autism. since 1979.
What should a pediatrician do when parents refuse
Discussion recommended immunizations? Some pediatricians will
Childhood immunization rates are among the 10 leading discontinue care for such families. They claim that they
health indicators used to assess the health of the nation cannot care for patients who do not trust their medical
as part of the Healthy People 2010 initiative, reflecting recommendations. In contrast to this approach, the
the high value placed on childhood immunizations. In AAP Committee on Bioethics recommends that the
the United States, childhood vaccinations for numerous pediatrician should listen carefully and respectfully to
infectious diseases are mandatory for entry into public the parents’ concerns and to share honestly what is
schools and licensed child care facilities, although some known about the risks and benefits of the vaccine in
private religious schools do not require them. Despite question and to correct any misconceptions and misin-
the success, the mandatory nature of immunizations formation. They should explore the possibility that cost
represents a tension between individual autonomy and is a reason for refusal. Rather than dismiss the family,
public health. Most states recognize a religious or philo- the AAP recommends that pediatricians take advan-
sophical exemption, although the courts have found that tage of their ongoing relationship with the family and
evaluating the sincerity, strength, and religious or philo- revisit the immunization discussion on subsequent
sophical nature of the refusals can be legitimate. visits. The AAP has also developed a form to document
Parents refuse vaccinations for many reasons. For the parents’ refusal.
some parents, refusal is based on religious or philo- If parents refuse immunizations for their children,
sophical beliefs; for others, it is based on fear of vaccine then the pediatrician should document this refusal on
safety. In the 1970s, a report in Archives of Disease of the school form. In some states, this documentation is
Childhood suggested a connection between the whole- adequate for school entrance. In other states, parents
cell pertussis vaccine and neurologic damage in chil- may have to provide additional evidence as to the
dren. This finding was a major impetus to developing a philosophical or religious nature of their objection.
safer acellular pertussis vaccine. In the late 1990s, fears
arose over the measles-mumps-rubella (MMR) vaccine Case 8
and its relationship to autism after the Lancet published Mr and Ms G come to the clinic with Gary, their
a report of severe developmental regression in children 5-year-old son. Gary was adopted as a newborn. Mr
by Wakefield and colleagues. The research team noted and Ms G have told you they plan to tell Gary about
that the onset of symptoms occurred after MMR im- his origins, but each time you ask, they give reasons
munization, although they had not proved a causal link. why they have not yet done so. They have kept the
In 2003, Simon Murch, one of Wakefield’s collabora- adoption secret from all but their immediate family.
tors, denounced assertions of a link between MMR and
autism and declared the existence of “unequivocal evi- Case 9
dence that MMR is not a risk factor for autism.” In 2004, Mr and Ms S bring their 5-year-old child, Sam, for a well-
evidence revealed that Wakefield had concealed the child visit. The family has just moved from California. As
fact that his research had been funded in part by the you try to take a full medical history, the parents become
legal team seeking redress for parents who believed visibly uncomfortable. Finally, Mr S takes Sam out of the
that their children had been injured by the MMR vac- room to play in the waiting room, at which time Ms S
cine, and many of the original collaborators retracted explains that they had infertility problems and used do-
their support for a link between autism and the MMR nor sperm and that Mr S is not Sam’s genetic father.
vaccine. However, it was not until 2010 that the Lancet They have only sketchy information about the sperm
fully retracted the manuscript, 1 week after the General donor, who was a 25-year-old healthy white medical
Medical Council (UK) found Wakefield guilty of dis- student. They have chosen not to tell Sam about his
honesty and flouting ethics protocols. In addition, nu- genetic parentage.
merous medical studies, including a large Institute of
Medicine review, have confirmed the lack of associa- Discussion
tion between autism and the MMR vaccine. Adoption is a legal procedure through which a perma-
In the United States, children who are undervacci- nent family is created for a child whose birth parents
nated are demographically different from children who are unable, are unwilling, or are legally prohibited
68 PART 1: DELIVERING PEDIATRIC HEALTH CARE

from caring for their child. Adoption has existed in importance because we understand that many
throughout history, although the focus has changed. illnesses have a genetic component; and yet, we are
Historically, “adoption served the needs of adults . . . also learning that genotype frequently does not cor-
for the purpose of kinship, religion or the community,” relate with phenotype and that family history may or
in contrast to our current focus on the needs and well- may not provide additional data.
being of the child. Questions also arise as to whether children have a
In the United States, formal adoptions peaked in 1970 right to know their genetic inheritance, whether
when about 175,000 adoptions occurred. Adoptions parents have a right to maintain secrecy, or both. The
have decreased because of many social factors, includ- literature about the psychological risks of disclosure
ing the decrease in the stigma of single mothers and and nondisclosure is limited and inconclusive. Never-
the increased availability of abortion. Since 1987, the theless, today most psychologists and psychiatrists
number of adoptions annually has remained relatively support disclosure because of its role in health care
constant, ranging from 118,000 to 127,000. Despite the screening, diagnosis, and treatment and the impor-
large number of children and families who are directly tance of genetic identity to one’s self-identity. Reasons
affected by adoption, the medical literature on adoption to respect nondisclosure include the potential threat
is scant. that such knowledge may pose to the parent–child
Before World War II, professional adoption workers relationship and the integrity of the family. Which
advised, if not insisted, that children be told of their reasons are stronger depends on how one weighs the
adopted status for the pragmatic reason that learning advantages and disadvantages.
of adoption from parents in a loving environment Although it might be argued that knowing their bio-
rather than by well-meaning or even malicious neigh- logic identity is better for children, the physician’s
bors, schoolmates, or relatives was better for the child. right to interfere in interpersonal family dynamics is
After World War II, the professional community argued and should be limited to situations of clear-cut abuse
against disclosing. By the mid-1970s, the pendulum re- or neglect; nondisclosure of biologic relationships
turned in favor not only of disclosing adoption but also does not rise to this level. Pediatricians should encour-
of openness in all aspects of adoption. Nevertheless, age disclosure in a developmentally appropriate man-
some families still try to keep the adoption a secret. ner and should discourage parents from waiting until
Assisted reproductive technologies (ARTs) offer the right moment. Parents can be referred to one study
individuals another possible means to achieve parent- from the United Kingdom that queried adolescents
hood (Chapter 81, Assisted Reproductive Technolo- and adults conceived through gamete donation and
gies, Multiple Births, and Pregnancy Outcomes). ARTs found that it was “less detrimental for children to
have offered some new twists. Whereas adoption be told about their donor conception at an early
separated genetic and social parenthood, ARTs allow age.” The physician should encourage disclosure
individuals to separate genetic, gestational, and social on the grounds that (1) secrecy may be detrimental to
parenthood. For example, through in vitro fertiliza- a trusting relationship between parents and children;
tion, a woman can gestate a fetus who is the product (2) later discovery by the child may have an adverse
of her husband’s sperm and a genetically unrelated effect on self-esteem; and (3) the child otherwise
egg donor whose identity is often unknown. More may learn of the genetic discrepancy in a less secure
common are children born by the use of sperm do- setting (eg, accidentally overhearing a relative). Nev-
nors, such as in the case of Sam. In the early days of ertheless, physicians should not disclose this informa-
donor insemination, the husband’s sperm was mixed tion to children without the parents’ permission.
with the donor’s sperm to leave open the possibility
that the child was the genetic heir. Now, determina- Case 10
tion of paternity is widely available and accessible and Ms H brings her 17-year-old son Harold to the clinic
makes this pretense obsolete. Although there was a lot for a preparticipation high school basketball physical
of secrecy surrounding gamete donation, there has examination. On taking the history, you learn that
been a movement to encourage disclosure of gamete Harold’s father died from a heart condition last year at
donors. Recently, the American Society for Reproduc- the age of 40 years. Harold’s uncle died in his late 20s
tive Medicine has issued a statement encouraging the when playing competitive tennis. You are concerned
disclosure of gamete donation, and this trend is even about the possibility of a familial cause of sudden
greater in some other countries where openness death caused by a cardiac condition known as hyper-
is required by legislation. In most of the empirical trophic obstructive cardiomyopathy (HCM). You rec-
studies to date, nondisclosure is common, but some ommend either an echocardiogram or genetic testing
studies are showing greater disclosure. to see whether Harold has HCM. Harold and his
For Gary and Sam, the clinical value of knowing mother refuse. You then write on his school physical
their correct genetic family history is that it may allow form that he is at risk for HCM and should not par-
their health care providers to perform particular di- ticipate in school sports without a cardiac workup.
agnostic measures or to counsel them about ways to Harold and his mother are quite angry. Harold is an
minimize their genetic susceptibilities through par- all-state player and is being recruited heavily by many
ticular lifestyle choices. As our understanding of universities. The mother plans to take Harold to an-
genetics improves, emphasis on collecting family his- other physician and demands that you not inform his
tory information increases, and yet data suggest it school or anyone else of your concerns. Harold and
may be highly inaccurate. Family history is growing his mother do not disclose the family history to a
CHAPTER 11 • Ethical and Legal Issues for the Primary Care Physician 69

colleague in a practice across town, who approves If the school were to be made aware (eg disclosure
him for interscholastic athletics. by child protective services), the school, in loco paren-
tis, should prohibit Harold from playing basketball or
Discussion other sports that may lead to his sudden death. This is
HCM is an autosomal dominant condition that is usually true even after Harold turns 18 years of age.
asymptomatic in preadolescents. It is an idiopathic
cause of cardiomyopathy, and the risk for sudden death, Case 11
particularly during intense athletic activity, increases Mr K brings Kevin for his prekindergarten examina-
with age. tion, during which you notice some linear ecchymoses
Harold is at risk for a life-threatening event that on his back. You ask Kevin how he got them, and
is exacerbated by physical activity. This diagnosis he answers that his father beat him for talking back at
would make him ineligible for sports and take away dinner last night. Kevin’s father confirms this explana-
his opportunity for a college sports scholarship. Of tion, explaining that he believes that corporal punish-
course, failure to diagnose this condition may result in ment is effective. He admits to using a belt because his
premature death in a high school gymnasium. Com- hand “did not produce the desired effect.” You inform
petitive sports participation is clearly risky for Harold. the family that corporal punishment that leaves marks
You try to convince Harold and his mother to have is abusive and that you plan to report your suspicions
the echocardiogram. They acknowledge that he is at of child abuse to the department of family services. The
risk, but Harold states that basketball is his life, and he father is irate, arguing that discipline is a family matter
is willing to risk his life to play. and that his religious faith supports his convictions of
Harold and Ms H view the issue as one of autonomy. spare the rod and spoil the child.
They understand the risks and benefits of playing,
given Harold’s possible cardiac condition, and they Discussion
believe that playing basketball is better for Harold An AAP policy statement on guidance for effective
despite the risk for sudden death. They also view the discipline begins by noting that “parents often ask
issue as one of confidentiality. They ask that you not pediatricians for advice about the provision of appro-
disclose to the school the family history that you dis- priate and effective discipline.” The most controversial
covered when interviewing Harold and his mother. aspect of this issue is the role, if any, for corporal pun-
This case is one in which the parent and child are in ishment. Although a recent survey of AAP members
consensus but in disagreement with the physician. found that about 85% of respondents generally or
The family’s position for confidentiality and nondis- completely opposed the use of corporal punishment,
closure must be weighed against the physician’s belief more than 90% of American families report having
that he or she needs to protect this child from his used spanking as a means of discipline at some time.
mother and himself. Consensus guidelines state that And data show that children learn what they live:
adolescents with HCM should not participate in adults who reported corporal punishment as a child
sports such as basketball. As a moral agent, the physi- were more likely to use it with their own children. In
cian has an obligation to prevent a serious imminent contrast, corporal punishment is being abolished in
risk for sudden death to a minor. Harold and his many countries by statute on the basis that it violates
mother cannot relieve the physician of this obligation. the rights of the child.
The physician also has an obligation to protect the Kevin’s father raises the point that his actions are
community. Imagine the reaction if Harold were based on his religious beliefs. Some religious groups
allowed to play and he did die on the basketball court take a strong position in support of corporal punish-
in front of many classmates and their families. Such ment. Currently, religious exemptions to most of the
an event might cause serious psychological trauma to child abuse and neglect statutes can be found, but the
the observers. How would the community respond exemptions do not apply to corporal punishment, nor
if they knew that the physician might have prevented should they. The religious exemptions were written to
this event? The physician has an obligation to protect protect parents who sought prayer-based therapy for
Harold and the community from such unnecessary their child rather than allopathic medical care; they
trauma. were not meant to protect a parent from being charged
Harold’s mother is correct that the physician must with abuse for beating a child.
not breach confidentiality without the permission of To examine the benefits and burdens of corporal
the patient or parent. Instead, the physician should punishment, the AAP cosponsored a consensus con-
notify child protection about this unusual form of ference on this topic in February 1996. The confer-
medical neglect, although whether child protective ence concluded with 13 consensus statements that
services would find the parent medically neglectful is addressed the role of spanking and corporal punish-
not clear-cut given that the chance Harold has the ment in parental discipline. Statement No. 6 com-
gene is only 50%. They could require Harold to un- ments on the lack of data on the effectiveness of
dergo testing if he wants to play sports. However, spanking in general, and Statement No. 8 comments
even if he has the gene, he is currently asymptomatic that the data show corporal punishment to be ineffec-
and his risk of having sudden cardiac death in the tive in older children and adolescents and “associated
short term is low, but increases with age. Thus, the with increased risk for dysfunction and aggression
state will need to decide whether there is an imminent later in life.” The strongest statement against corporal
risk of death. punishment was Statement No. 12, which states that
70 PART 1: DELIVERING PEDIATRIC HEALTH CARE

“concerning forms of corporal punishment more se- 10,781 births occurring in a freestanding birthing
vere than spanking, the data suggest that the risk for center. A review article in 2010 noted that the
psychological or physical harm outweigh any potential benefits of home birth are fewer cesarean or opera-
benefits.” More recent data show that even nonabu- tive vaginal deliveries, episiotomies, infections, and
sive corporal punishment is associated with increased third- and fourth-degree lacerations. The major con-
aggressive behavior and delinquency in children. cern about home deliveries is that they may be
Despite common use and acceptance of corporal associated with excess perinatal and neonatal mor-
punishment, the data show that, over time, spanking is tality, particularly among nonanomalous term in-
a less effective strategy than noncorporal methods for fants. The American College of Obstetricians and
reducing undesired behavior. Furthermore, this type of Gynecologists (ACOG) strongly opposes the prac-
punishment becomes less effective with continued use. tice. In many other countries, however, professional
The AAP recommends that parents “be encouraged obstetric societies have endorsed home birth for
and assisted in developing methods other than spank- low-risk pregnancies.
ing in response to undesired behavior.” The AAP men- VBAC is a more risky event than a typical vaginal
tions both the time-out method and the removal of delivery and is associated with more risks than a re-
privileges as “two common discipline approaches that peat cesarean delivery. The risk for uterine rupture is
have been associated with reducing undesired behav- 0.7%, and the risk for hypoxic-ischemic encephalopa-
ior.” The AAP statement noted further that many par- thy is also increased (absolute risk, 0.46 per 1,000
ents go beyond spanking and use an object or other women at term undergoing a trial of labor). An ACOG
forms of unacceptable corporal punishment: “When practice bulletin states that good and consistent scien-
punishment fails, parents who rely on it tend to increase tific evidence indicates that most women with 1 previ-
the intensity of its use rather than to change strategies.” ous cesarean delivery are candidates for attempting
This action is no longer discipline but child abuse. VBAC. However, because uterine rupture may be
Pediatricians should help parents understand the catastrophic, ACOG recommended that VBAC be at-
facts about corporal punishment and to realize that tempted only in institutions equipped to respond to
any such punishment (beyond an occasional mild emergencies.
spanking) is unacceptable and will be reported. No Clearly, Mrs R’s decision to attempt a VBAC at
morally justifiable reason exists for a parent to inflict home is against the ACOG recommendations and is
physical harm on a child. Although physical manifes- risky for both Mrs R and her fetus. It is not what you
tations of violence are an imperfect measure of the would recommend. Informing the parents that you
severity of punishment, they at least define an unac- believe that their action is placing Mrs R and the
ceptable threshold. The marks on Kevin are a sign that fetus at risk for harm is morally obligatory. The pe-
his father used more physical force than is morally diatrician should recommend in-hospital delivery for
acceptable. Reporting to child protective services may the sake of both the child and the pregnant woman.
be necessary. The physician must work with this fam- In the end, however, Mrs R has and should have
ily to modify their discipline strategy. broad autonomy with respect to her obstetric deci-
sions, and many of these are beyond the purview of
Case 12 the pediatrician.
Mr and Mrs R call you to arrange a