ARTICLE

Incidence and Age-Specific Presentation

of Restrictive Eating Disorders in Children
A Canadian Paediatric Surveillance Program Study
Leora Pinhas, MD, FRCPC; Anne Morris, MBBS, MPH, FRACP; Ross D. Crosby, PhD; Debra K. Katzman, MD, FRCPC

Objectives: To document and describe the incidence
and age-specific presentation of early-onset restrictive eat-
ing disorders in children across Canada.
Design: Surveillance study. Cases were ascertained through
the Canadian Paediatric Surveillance Program by survey-
ing approximately 2453 Canadian pediatricians (a 95%
participation rate) monthly during a 2-year period.
Setting: Canadian pediatric practices.
tricians was 2.6 cases per 100 000 person-years. The ra-
tio of girls to boys was 6:1, and 47.1% of girls and 54.5%
of boys showed signs of growth delay. Forty-six percent
of children were below the 10th percentile for body mass
index, 34.2% were initially seen with unstable vital signs,
and 47.2% required hospital admission. Only 62.1% of
children met criteria for anorexia nervosa. Although chil-
dren with anorexia nervosa were more likely to be medi-
cally compromised, some children who did not meet cri-
teria for anorexia nervosa were equally medically unstable.

Participants: Pediatricians and pediatric subspecialists.
Main Outcome Measures: A description of clinical
presentations and characteristics of eating disorders in
this population and the incidence of restrictive eating dis-
orders in children.
Results: The incidence of early-onset restrictive eating
disorders in children aged 5 to 12 years seen by pedia-
Conclusions: Young children are seen with clinically sig-
nificant restrictive eating disorders, with the incidence
exceeding that of type 2 diabetes mellitus. These eating
disturbances can result in serious medical conse-
quences, ranging from growth delay to unstable vital signs,
which can occur in the absence of weight loss or other
restrictive eating disorder symptoms.
Arch Pediatr Adolesc Med. 2011;165(10):895-899

Author Affiliations: Eating
Disorders Program, Department
of Psychiatry (Drs Pinhas) and
Division of Adolescent
Medicine, Department of
Paediatrics (Dr Katzman),
University of Toronto, The
Hospital for Sick Children,
Toronto, Ontario, Canada;
Department of Pediatrics and
Child Health, Children’s
Hospital at Westmead,
Westmead, Australia
(Dr Morris); and
Neuropsychiatric Research
Institute, School of Medicine
and Health Sciences, University
of North Dakota, Fargo
(Dr Crosby).
L
ITTLE INFORMATION EXISTS
about restrictive eating dis-
orders (EDs) in children and
adolescents, despite onset
occurring most commonly
between the ages of 10 and 20 years1 and
EDs reported in children as young as 5
years old.2 Subsyndromal presentations of
anorexia nervosa (AN), typically referred
to as EDs not otherwise specified, have
higher rates of occurrence but often are
underreported or misdiagnosed in chil-
dren.3 Adequate data documenting the in-
cidence and presentation of EDs among
children in North America are lacking.
Policy makers and health care profession-
als need epidemiologic information in chil-
dren with EDs to improve treatment plan-
ning and resource allocation.4
The incidence and prevalence of men-
tal health disorders are often estimated using
large community surveys involving inter-
viewing for specific diagnoses.5-9 Represen-
tative population-based studies yield more
valid estimates of rates in the population
than clinical case series or registries. How-
ever, the ability of a study to estimate inci-
dence and prevalence is dependent on the
number of cases detected. Less common or
concealed disorders, such as EDs, can pre-
sent particular challenges. Many population-
based mental health surveys have failed to
identify or report any child or adolescent
cases of EDs; investigators typically have not
attempted to estimate the occurrence of
EDs.10-13
Therefore, North American data fre-
quently originate in clinical registries from
individual specialized ED treatment pro-
grams. These designs are challenged by se-
lection bias, whereby nonidentification can
result from failure to seek treatment. Re-
gardless of method used, studies14-18 have
found few cases of EDs in children; re-
searchers using a clinical registry in a
United Kingdom database of primary care
settings reported in 1996 that the inci-
dence of AN in girls younger than 10 years

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 was 0.4 cases per 100 000 person-years.16 More re-
cently, a prospective study2 in Australia documented the
incidence of restrictive EDs as 1.4 cases per 100 000 chil-
dren aged 5 to 13 years. Such data are unavailable for
North America, and the only similar (although non-
equivalent) information is provided by health services use
hospitalization data in children with EDs. American data
comparing estimates from 1999-2000 vs 2005-2006 in-
dicate that 4% of admissions (n = 1126) for an ED
(n=28 155) in 2005-2006 were among children younger
than 12 years; compared with 1999-2000, this repre-
sented a 119% increase.19 In Canada, the hospitalization
rate among girls aged 10 to 14 years with EDs was 22
admissions per 100 000 person-years.20 These numbers
indicate that EDs exist among younger children.
From a diagnostic standpoint, the presentation of EDs
among youth can differ significantly depending on age,
and there is no clear picture of restrictive EDs in young
children.21-23 Although some studies24-26 have described
children with early AN, they represent small case series
in single specialized treatment centers collected over a
period of years. This method has limited generalizabil-
ity of results and does not provide meaningful informa-
tion on initial presentation of EDs. A recent retrospec-
tive study21 had a larger sample size and compared the
presentation of EDs in young patients (⬍13 years) vs older
adolescents (ⱖ13 years). In that study, younger chil-
dren were more likely to weigh less, be diagnosed as hav-
ing EDs not otherwise specified, and have a shorter du-
ration of disease. Children diagnosed as having AN were
less likely to endorse cognitions related to weight and
shape. As in the study2 from Australia, there was a large
proportion of boys in the sample, as well as high rates of
psychiatric comorbidity.21 Other studies2,3,27 have re-
ported that children with EDs have a high incidence of
comorbid psychiatric diagnoses.
The objectives of this study were to document and de-
scribe the incidence and age-specific clinical presenta-
tion of early-onset EDs in children (aged ⬍13 years) with
significant food restriction or weight loss seen in pedi-
atric practices. This study was approved by the Re-
search Ethics Board at The Hospital for Sick Children,
Toronto, Ontario, Canada.
METHODS
Cases were ascertained between March 1, 2003, and February 28,
2005, through the Canadian Paediatric Surveillance Program
(CPSP).28 Surveillance studies are used internationally to de-
scribe and track rare conditions, including EDs.2 The CPSP, a na-
tional initiative, is designed to collect data about rare conditions
in pediatric populations. Approximately 2453 Canadian pedia-
tricians (95%) in clinical practice participate in this program. Vali-
dation studies28,29 of the CPSP indicate an initial reporting rate of
82%, with a 96% response rate for detailed questionnaire comple-
tion. Pediatricians were surveyed monthly and were asked to re-
port any new cases meeting criteria for this study.
CASE DEFINITION
Cases were defined as any child aged 5 to 12 years seen in the
previous month with newly identified restrictive ED symp-
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toms.29 In this study, the word restrictive refers to intentional
limitation or avoidance of nutrition. A broad definition of EDs
was used, which included any disordered eating behavior suf-
ficient to cause a disruption, weight gain, or actual loss of weight.
Obese children in a supervised program were excluded from
the study.
PROTOCOL
The symptom questionnaire was developed in consultation with
pediatric researchers in Canada, Australia, and the United King-
dom.2 Once a pediatrician reported a case using the initial re-
porting form, he or she was mailed a secondary detailed ques-
tionnaire to report the presence or absence of restrictive ED
symptoms. The pediatrician was also asked to report associ-
ated physical findings, including unstable vital signs (systolic
blood pressure ⬍80 mm Hg, heart rate ⬍50 or ⬎100 beats/
min, or body temperature ⬍35.5°C), and on social and psy-
chiatric history, psychiatric comorbidity (Axis I diagnoses), and
any planned follow-up ED treatment. The completed question-
naires were forwarded to us by the CPSP.
STATISTICAL ANALYSIS
Data were analyzed using commercially available statistical soft-
ware (SPSS, version 15.0; SPSS, Inc, Chicago, Illinois).30 Ini-
tially, descriptive analyses were performed. Differences among
the sexes, those hospitalized, and children with unstable vital
signs were explored using t test and ␹2 analysis. Anorexia ner-
vosa was operationally defined in children who lost weight or
failed to make expected weight gains, with restriction de-
scribed as determined food avoidance, fear of getting fat or gain-
ing weight, and misperception of body size or denial of symp-
tom severity. For this study, amenorrhea was waived as irrelevant
because many girls in this age group are premenarchal. Using
t test and ␹2 analysis, children who met criteria for AN were
compared with those who did not.
RESULTS
INCIDENCE OF EDs
The incidence of early-onset restrictive EDs in children aged
5 to 12 years seen by pediatricians was 2.6 (95% confi-
dence interval [CI], 2.1-3.2) cases per 100 000 person-
years. The lowest incidence was 0.4 (95% CI, 0.1-1.1) cases
per 100 000 person-years, observed in boys aged 5 to 9 years,
while the incidence in girls aged 5 to 9 years was 1.3 ( 0.7-
2.3) cases per 100 000 person-years. The highest inci-
dence was 9.4 (95% CI, 7.2-12.2) cases per 100 000 person-
years, observed in girls aged 10 to 12 years, while the
incidence in boys aged 10 to 12 years was 1.3 (0.5-2.5) cases
per 100 000 person-years.
CHARACTERISTICS OF THE STUDY SAMPLE
In total, 161 children younger than 13 years from across
Canada were included in the study. The ratio of girls to
boys was 6:1 (138 girls and 22 boys) with 1 case not speci-
fying sex. The mean (SD) age was 11.0 (1.5) years, and
the mean (SD) duration of symptoms before ED identi-
fication was 28 (28) weeks. Most identified children of
white race/ethnicity (91.2%), followed by Asian (4.4%);
the remaining 4.4% of children were Latin American,
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 Table 1. Frequencies of Restrictive Eating Disorder
Symptoms and Associated Characteristics
No. (%)
Variable (n=161)
Food avoidance 156 (96.9)
Preoccupation with food 133 (82.6)
Fear of getting fat or gaining weight 118 (73.3)
Preoccupation with weight 115 (71.4)
Denial of symptom severity 100 (62.1)
Misperception that body is larger than it is 91 (56.5)
Overexercising 82 (50.9)
Family history of psychiatric disorder 59 (36.6)
Unstable vital signs 55 (34.2)
Somatic complaints 50 (31.1)
Comorbid anxiety disorder 44 (27.3)
Depression 25 (15.5)
Self-induced vomiting 18 (11.2)
Obsessive-compulsive disorder 14 (8.7)
Laxative or diuretic use 0 mitted (Table 2).
black, Middle Eastern, or of mixed race/ethnicity. The
frequencies of symptoms and associated characteristics
are given in Table 1.
The mean (SD) weight loss among the children was
7.4 (10.0) kg, representing a mean loss of 20.9% in body
mass. One boy (4.5%) and 26 girls (18.8%) had ED symp-
toms unaccompanied by weight loss. One hundred six
girls (77.5%) had not reached menarche; among those
who had, 14 of 27 (51.9%) had secondary amenorrhea
(loss of menses for ⱖ3 months). Data were missing for
5 other girls’ forms. Most girls (83.2%) were ineligible
for the amenorrhea criterion, and 91.3% of the study
sample did not or could not have secondary amenor-
rhea. Based on available growth curves, 33 of 70 girls
(47.1%) and 6 of 11 boys (54.5%) had no growth in height
during the previous 6 months. Among children who had
not lost weight and for whom previous height was avail-
able, 6 of 20 (30.0%) had not grown in height in the pre-
vious 6 months. Seventy-four children (46.0%) were be-
low the 10th percentile for body mass index, and 55
children (34.2%) had unstable vital signs.
All children had been seen by a pediatrician, and 89
children (55.3%) were seen by a psychiatrist, 92 (57.1%)
by a psychologist, 92 (57.1%) by a social worker, and 128
(79.5%) by a dietician. Seventy-one children (44.1%) had
at least 1 comorbid psychiatric diagnosis. Almost one-
fifth (18.6%) had received a psychotropic medication,
most commonly a selective serotonin reuptake inhibi-
tor (54.8%) or an atypical antipsychotic (19.4%).
About half (47.2%) of the sample had been hospital-
ized, with a mean stay of 32.2 days (range, 2-109 days).
Many children (61.0%) were admitted to a general pe-
diatric unit, with the remaining admitted to a specialty
ED unit (31.3%) or a child psychiatry unit (7.8%). Of
those admitted, 18.4% were treated with a nasogastric
tube, and 25.7% were treated with a psychotropic medi-
cation.
Unstable vital signs or body mass index below the 10th
percentile was correlated with hospital admission, and
children with both unstable vital signs and body mass
index below the 10th percentile were most likely to be
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Table 2. Comparison Between Children Who Were
Hospitalized vs Not Hospitalized a
No. (%)
Not
Variable Hospitalized Hospitalized
Unstable vital signs (n = 55) 46 (83.6) 9 (16.4)
BMI below 10th percentile (n = 73) 50 (68.5) 23 (31.5)
Both unstable vital signs and BMI below 35 (92.1) 3 (7.9)
10th percentile (n = 38)
Abbreviation: BMI, body mass index.
a Two sided P ⬍ .001 by ␹2 analysis for all comparisons.
admitted. Nine children (16.4%) with unstable vital signs
and 3 children (7.9%) with both unstable vital signs and
body mass index below the 10th percentile were not ad-
One hundred children (62.1%) met criteria for AN.
Forty-one children (25.5%) had EDs not otherwise speci-
fied.6 Data were unavailable for 20 children. Symptoms
and associated characteristics of the 2 groups are given
in Table 3. Children meeting criteria for AN were more
likely to be hospitalized and to have unstable vital signs.
Children who did not endorse a fear of getting fat or gain-
ing weight, misperception of body size, or preoccupa-
tion with weight were equally likely to have lost weight
and were more likely to endorse somatic complaints and
to have a comorbid anxiety disorder.
COMMENT
To our knowledge, this is the first cross-country study
in North America to describe the presentation and inci-
dence of restrictive EDs among children. The incidence
reported in this study reflects children identified by pe-
diatricians but does not include cases that were not
brought to medical attention or children who were seen
by other physicians. Although the reported rates in this
study are likely an underestimate of incidence, it repre-
sents one of few descriptions of this population in North
America.31 There is no cost-effective way to screen the
general population or family physicians to yield more com-
prehensive results. Extrapolating from the adult litera-
ture that suggests only 25% to 50% of patients with EDs
access treatment,1,8,9 it is feasible that the true incidence
in this population is 2 to 4 times greater than that re-
ported herein. This study describes an incidence that is
twice that of a similar study in Australia.2 Some of this
difference can be explained by variation in study de-
sign. Rather than focusing on inpatients, the present study
identified children who were admitted to the hospital and
children who were treated as outpatients. The Austra-
lian study2 reported only on inpatients for the first 2 years
of the study.
Comparing the incidence of restrictive EDs with the rate
of other better-known disorders with potentially grave out-
comes in morbidity and mortality, such as type 2 diabetes
mellitus, helps contextualize the data. The American Dia-
betes Association has described type 2 diabetes mellitus in
young people as a “new epidemic.”32,33 Using the same study
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 Table 3. Differences in Symptom Endorsement Between Children Who Met Criteria for Anorexia Nervosa (AN) vs Eating Disorders
Not Otherwise Specified (EDs NOS) a

AN EDs NOS Two-Sided

Variable (n = 100) (n = 41) P Value
Age, mean (SD) [range], y 11.5 (1.4) [5-12] 10.9 (1.5) [5-12] .046
Food avoidance, % 100.0 90.2 ⬍.01
Fear of getting fat or gaining weight, % 100.0 26.8 ⬍.001
Misperception that body is larger than it is, % 86.0 7.3 ⬍.001
Preoccupation with weight, % 92.0 31.7 ⬍.001
Preoccupation with food, % 90.0 61.0 ⬍.001
Overexercising, % 67.0 22.0 ⬍.001
Denial of symptom severity, % 77.0 39.0 ⬍.001
Self-induced vomiting, % 14.1 4.9 .15
Somatic complaints, % 22.2 43.9 ⬍.05
Comorbid anxiety disorder, % 41.5 25.0 .07
Weight loss
% 86.6 72.5 .08
Mean (SD), kg 7.9 (5.5) 5.6 (3.7) .05
Unstable vital signs, % 43.2 22.0 ⬍.05
Hospitalized, % 56.0 31.7 ⬍.05

a Data were unavailable for 20 children.

methods as herein, Canadian data on diabetes indicate an
annual incidence of 1.54 cases per 100 000 person-years
in those younger than 18 years and 0.27 cases per 100 000
person-years in children younger than 10 years.34 The in-
cidence of restrictive EDs among children is 2 times greater
than the incidence of type 2 diabetes mellitus among all
children younger than 18 years.
In addition, this study confirms that children with clini-
cally significant restrictive EDs are seen by pediatri-
cians. Children in this study demonstrated food avoid-
ance, and some showed signs of growth delay even without
weight loss. They also had unstable vital signs and in-
terruption of their normal growth trajectory. Almost half
of the sample were hospitalized because of medical in-
stability; however, a concerning finding is the number
of underweight or medically unstable children who were
not admitted to the hospital. Although EDs in children
may seem mild, they can be as severe as in adolescents.
Caution should be exercised when assessing a child with
food avoidance of any kind, especially with associated
weight loss or growth delay, regardless of whether he or
she expresses the spectrum of typical psychological find-
ings commonly seen in adolescents and adults. Pediatri-
cians need to be vigilant about EDs, even if they seem
minor, and respond accordingly.
Although most cases looked like typical AN, some chil-
dren lacked cardinal AN symptoms and would typically
be classified as having EDs not otherwise specified. The
changes proposed for the Diagnostic and Statistical Manual
of Mental Disorders (Fifth Edition) reflect recognition that
the diagnostic categories for EDs are limited for early-
onset EDs.23,35 Children identified in this study and oth-
ers2,22,23 would likely meet criteria for the newly pro-
posed category of food avoidant or restrictive disorder
of childhood, which recognizes alternate underlying
causes of food restriction other than weight and shape
concerns.
The national sampling strategy used by the CPSP for
this study is unique among pediatric EDs in North
America and is a major strength. It allows for sampling
of most clinical practices and is not limited to a single
setting. A limitation of the study is the omission of binge-
ing as a symptom in the questionnaire. This was done
purposefully to avoid confusion with bulimia nervosa,
with the primary focus being on restrictive behaviors. As
such, the study provides no information on bingeing be-
havior in this population. However, a current ongoing
study on bingeing, using the same methods as those
herein, has failed to identify this behavior in any chil-
dren younger than 13 years, suggesting that bingeing is
not prominent in this age group.36 Finally, previous lit-
erature has described additional eating disturbances of
childhood. Cooper et al30 described other restrictive EDs
unaccounted for by either of the 2 forms seen herein (AN
and EDs not otherwise specified). The focus of the present
study did not include questions that would allow for iden-
tification of these other diagnoses.
Restrictive EDs, although uncommon in children, oc-
cur more often than some other chronic illnesses and at
presentation often require multidisciplinary treatment or
hospitalization. The use of strict categories for diagnosis
can limit true appreciation of the severity and differing
manifestations of pathologic EDs in different popula-
tions. Current epidemiologic data on children with EDs
are inconsistent and inadequate. It will be crucial for in-
vestigators to devise strategies that maximize case identi-
fication and to develop standardized means to capture and
report data. This will improve comparisons across samples
and enhance our understanding of EDs in children.
Accepted for Publication: April 1, 2011.
Correspondence: Leora Pinhas, MD, FRCPC, Eating Dis-
orders Program, Department of Psychiatry, University of
Toronto, The Hospital for Sick Children, 555 Univer-
sity Ave, Toronto, ON M5G 1X8, Canada (leora.pinhas
@sickkids.ca).
Author Contributions: Study concept and design: Pinhas,
Morris, and Katzman. Acquisition of data: Pinhas, Mor-

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 ris, Crosby, and Katzman. Analysis and interpretation of
data: Pinhas and Crosby. Drafting of the manuscript: Pinhas,
Crosby, and Katzman. Critical revision of the manuscript
for important intellectual content: Pinhas, Morris, Crosby,
and Katzman. Statistical analysis: Pinhas. Obtained fund-
ing: Pinhas and Morris. Administrative, technical, and ma-
terial support: Pinhas and Katzman. Study supervision:
Pinhas and Katzman.
Financial Disclosure: None reported.
Funding/Support: This study was supported by Health
Canada.
Role of the Sponsor: Health Canada was not involved
in any aspect of the study.
Additional Contributions: Danielle Grenier, MD, FRCPC,
assisted with the study. Reva Schachter, MSc, and Blake
Woodside, MD, FRCPC, provided study support. We
would like to acknowledge the members of the Adoles-
cent Health Committee at the Canadian Pediatric Soci-
ety and all the pediatricians across Canada who have con-
tributed to this work.
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