in association with

Special Considerations for Adolescents and Young Adults With Hematologic Malignancies
Suzanne Ameringer, PhD, RN
Assistant Professor Family and Community Health Nursing Virginia Commonwealth University Richmond, Virginia
This program is supported by educational grants from

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Faculty
Program Chair
Jeanne M. Erickson, PhD, RN, AOCN
Assistant Professor University of Virginia School of Nursing Charlottesville, Virginia

Suzanne Ameringer, PhD, RN

Assistant Professor Family and Community Health Nursing Virginia Commonwealth University Richmond, Virginia

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Faculty Disclosures
Jeanne M. Erickson, PhD, RN, AOCN, has no significant financial relationships to disclose.
Suzanne Ameringer, PhD, RN, has no significant financial relationships to disclose.

Understanding the Needs of Adolescents and Young Adults

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Psychosocial Issues
Adherence
Quality of life Survivorship

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Adherence in AYAs
Rates of adherence
Nonadherence highest among adolescents compared with younger and older patients 27% of adolescents had no trimethoprim/sulfamethoxazole in blood at 6 mos after diagnosis[1]

Poor adherence associated with infections, fevers, and survival

Poor adherence may be one of the reasons for poorer outcomes in AYAs

1. Kennard BD, et al. J Clin Psychol Med Settings. 2004;11:30-39.

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Factors Associated With Adherence

Knowledge about treatments and outcomes
Perceived control over outcomes Self-efficacy related to completing treatment

Self-esteem
Depressive symptoms Need for independence

Communication (with providers/parents)

Parental characteristics Health insurance issues

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Adherence Interventions
Provider approaches[1]
Information on all new meds and dosage changes Simplify med schedule and align with AYAs daily routine

Flexible treatment and procedure dates

AYA intervention
Video game of cancer treatment and care issues improved treatment adherence in AYAs (13-29 yrs)[2]

1. NCCN. Clinical practice guidelines in oncology: adolescent and young adult oncology. v.1.2012. 2. Kato PM, et al. Pediatrics. 2008;122:e305-e317.

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Quality of Life
Stunning loss of normalcy[1]
Health-related quality of life low at diagnosis, then increases over time[2] Adverse effects of treatment on physical and psychosocial function

1. Stegenga K, et al. J Pediatr Oncol Nurs 2009;26:75-80. 2. Jrngrden A, at al. Eur J Cancer. 2007;43:1952-1958.

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Quality of Life: Physical Function

Body image changes (self-image)
Disfigurement Hair loss

Disability
Sexuality Potential loss of reproductivity

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Quality of Life: Psychosocial Function

Anxiety, depression, and PTSD symptoms
Face own mortality Relationships

Autonomy and independence

Need for meeting others like them Need for information

NCCN. Clinical practice guidelines in oncology: adolescent and young adult oncology. v.1.2012

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Quality of Life: Interventions

Providers
Initial psychosocial assessment Mental health professionals involved throughout treatment and during follow-up Interventions delivered in age-appropriate format Types of interventions found effect with AYA

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Quality of Life: Interventions

Families and friends
Parents intercede Peers provide protection

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Resources for AYA Patients

Stupidcancer.org: http://omgsummit.org/2013/index2.html
Mass Kickers Foundation: http://www.masskickers.org/wp/about-us/erics-welcome Imerman Angels.org: http://www.imermanangels.org/index.php The Ulman Cancer Fund for Young Adults: http://www.ulmanfund.org

LIVESTRONG Young Adult Alliance: http://www.livestrong.org/What-We-Do/OurActions/Programs-Partnerships/LIVESTRONG-YoungAdult-Alliance

Understanding the Needs of Adolescents and Young Adults

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Stupidcancer.org

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Survivorship
Lack adequate follow-up and long-term care
Survival trends are lowest compared with younger and older patients[1]

Factors that can affect survivorship

Age, sex, prognosis, treatment regimen, family, support, spirituality, financial situation, level of knowledge about healthcare system, more mobile

1. Bleyer A, et al. Cancer epidemiology in older adolescents and young adults 15 to 29 years of age, including SEER incidence and survival: 1975-2000. NCI NIH Pub. No. 06-5767; 2006.

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Psychosocial Issues of Survivors

AYAs identified the following[1,2]
Self-image, self-esteem Body image

Disability
Mental health Relationships

Fear
Positive effects
1. Nightingale CL, et al. J Adol Young Adult Oncol. 2011;1:124-132. 2. NCCN. Clinical practice guidelines in oncology: adolescent and young adult oncology. v.1.2012.

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Survivorship Issues: Late Effects

Specific risks for AYA[1]
Secondary cancers: chest radiation in 10- to 30-yr-old females increases risk for breast cancer Cardiovascular complications
Leading cause of nonmalignant deaths in AYA

Pulmonary complications
Lung fibrosis and pleurisy from lung radiation and chemotherapy

Neurological complications
Cranial radiation: risk for negative cognitive effects and lower physical function Adolescents at greater risk for radiation-induced spinal cord dysfunction
1. NCCN. Clinical practice guidelines in oncology: adolescent and young adult oncology. v.1.2012.

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Survivorship Interventions
Transition programs
Survivorship plan
Address financial issues in survivor plan

Mental health supportive services

Health behavior risk issues Information

AYA interventions to improve quality of life

Recapture Life-AYA randomized phase II study[1]
1. Sansom-Daly UM, et al. BMC Cancer. 2012;12:339.

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Conclusions
Nonadherence
Need to know outcomes of nonadherence NOT only chemotherapy

Quality of life
More attention to sexuality, loss of reproductivity, mental health

Survivorship
Adequate long-term care Higher risk for cardiovascular complications Develop and continually reassess survivorship plan

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