INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 2: 59–85 | APRIL 2011

Prevalence of Chronic Health Conditions in Children With

Intellectual Disability: A Systematic Literature Review
Barth Oeseburg, Geke J. Dijkstra, Johan W. Groothoff, Sijmen A. Reijneveld, and
Daniëlle E. M. C. Jansen

Abstract
A systematic review of the prevalence rates of chronic health conditions in populations of children
with intellectual disability was provided. We identified 2,994 relevant studies by searching Medline,
Cinahl, and PsycINFO databases from 1996 to 2008. We included the 31 studies that had sufficient
methodological quality. The 6 most prevalent chronic health conditions in children with
intellectual disability were epilepsy (22.0/100), cerebral palsy (19.8/100), any anxiety disorder
(17.1/100), oppositional defiant disorder (12.4/100), Down syndrome (11.0/100), and autistic
disorder (10.1/100). The reported prevalence rates of chronic health conditions in this population
was much higher than in the general population. However, both the number of studies that were
included and the number of chronic health conditions they reported about were limited. There is an
urgent need for better evidence on the prevalence of chronic health conditions among children
with intellectual disability.

DOI: 10.1352/1934-9556-49.2.59

In the past three decades, there has been an
increase in knowledge about chronic health
conditions in children with intellectual disabilities.
In several studies researchers found that many of
these children have with a range of chronic health
conditions (Emerson & Hatton, 2008; Goddard,
Davidson, Daly, & Mackey, 2008; Sturmey, Lind-
say, & Didden, 2007; Van Schrojenstein Lantman-
de Valk & Walsh, 2008; World Health Organiza-
tion, 2000).
A major difficulty in studies on this subject is
the wide variability of prevalence rates that are
reported for specific chronic health conditions in
children with intellectual disability. This variability
is a result of heterogeneity of several factors, such as
size of the sample, definition of the study popula-
tion, recruitment of the study population, response
rate, method of diagnosis, and the use of different
classification frameworks for diagnosing certain
disorders in children with intellectual disability.
As a result, the validity of prevalence rates has been
disputed (Borthwick-Duffy, 1994; Bradley, Sum-
mers, Wood, & Bryson, 2004; Cooper, Smiley,
Morrison, Williamson, & Allen, 2007; Davis &
Brosco, 2007).
Both policymakers and healthcare professionals
value and need valid prevalence rates. Policymakers
require these data for the planning and financing of
adequate care arrangements (e.g., health, educa-
tion, work) in order to enhance the well-being and
societal participation of children with intellectual
disability and their families. Professionals need
these data for the early detection and adequate
treatment of chronic health conditions and pre-
vention of the burden of these conditions for
children with intellectual disability and their family
(Goddard et al., 2008; Hou, Wang, & Chuang,
1998; Luckasson et al., 2002; McDermott, Durkin,
Schupf, & Stein, 2007; Newacheck, Rising, & Kim,
2006; Strømme & Hagberg, 2000; van der Lee,
Mokkink, Grootenhuis, Heymans, & Offringa,
2007; Yeargin-Allsopp, Boyle, Van Naarden Braun,
& Trevathan, 1997).
Our aim in this study is to provide an overview
of the prevalence rates of chronic health conditions
in populations of children with intellectual disabil-

’American Association on Intellectual and Developmental Disabilities 59

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
Chronic health conditions
ity by presenting a systematic literature review.
This review is part of a research project on chronic
health conditions in a population of children with
intellectual disability in the Netherlands.
Method
Data Sources and Identification of Studies
We searched the following electronic databases
for relevant studies from 1996 to 2008: Medline,
Cinahl, and PsycINFO. Our search terms were
mental retardation, intellectual disability or disabilities,
mentally disabled persons, mental development, intel-
lectual development, developmental disability or disabil-
ities, learning disability or disabilities, or learning
development in Major Medical Subject Headings
Descriptor (MJME), and learning disorders in all
subheadings. We used the International Classification
of Diseases (ICD-9) classification chapter entitled 1
to 16 (World Health Organization, 1977), the ICD-
10 classification chapter entitled I to XVIII (World
Health Organization, 1992), the Diagnostic and
Statistical Manual of Mental Disorders (DSM III and
III-R) classification chapter entitled ‘‘Disorders
Usually First Evident in Infancy, Childhood,
Adolescence’’ (American Psychiatric Association,
1980, 1987), and the DSM IV and IV-TR
classification chapter entitled ‘‘Disorders Usually
First Diagnosed in Infancy, Childhood, or Adoles-
cence’’ (American Psychiatric Association, 1994,
2000) for the selection of chronic health conditions
in children. The diagnostic titles were translated in
Medical Subject Headings with complications,
diagnosis, or epidemiology in all subheadings.
Additional studies were obtained from the refer-
ence lists of the included studies.
Study Selection
In order to be considered for inclusion,
researchers had to report mainly about children
(,19 years) diagnosed with borderline, mild,
moderate, severe, or profound intellectual disability
and with a chronic health condition. Intellectual
disability was ideally established by a validated
intelligence and/or adaptive behavior test and
ideally classified according to the DSM classifica-
tions (American Psychiatric Association, 1980,
1987, 1994, 2000) or the ICD (World Health
Organization, 1977, 1992). Although borderline
intellectual disability has not been an accepted
level for quite a long time, studies in which
60 ’American Association on Intellectual and Developmental Disabilities
VOLUME 49, NUMBER 2: 59–85 | APRIL 2011
B. Oeseburg et al.
researchers reported on children with borderline
intellectual disability were included because this
group faces substantially elevated cognitive and
morbidity risks as well as problems in adaptive
behavior (Ferrari, 2009; Masi, Marcheschi, &
Pfanner, 1998).
A chronic health condition was defined as a
chronic physical, developmental, behavioral, or
emotional condition in children ages 0 to 18 years.
The condition had to be present for longer than
3 months, would probably last longer than 3 months,
or had occurred three times or more during the past
year and would probably recur. The chronic health
condition had to be diagnosed according to profes-
sional standards or extracted from medical case files
or registers and ideally classified according to the
DSM or ICD (Mokkink, van der Lee, Grootenhuis,
Offringa, & Heymans, 2008; van der Lee et al.,
2007).
Eligible studies had to be in English; have a
cohort, patient-control, or cross-sectional design;
and had to be focused on a population of children
with intellectual disability. We excluded studies
that were focused exclusively on subpopulations of
children with a specific biomedical cause of
intellectual disability, such as Down syndrome,
because there are reviews available about the
prevalence of chronic health conditions related to
specific conditions (Merrick, Kandel, & Vardi,
2004; Prasher, 1999; Roizen & Patterson, 2003). In
addition, studies in which participants were all
adults, those with other designs (e.g., case studies),
studies that were not original research (e.g., reviews
or comments), and studies in which the diagnoses
were based on screening instruments were also
excluded.
Three of the authors independently screened
the titles and abstracts of the relevant studies from
1996 to 2008 for eligibility. Each reviewer screened
two thirds of the titles and abstracts; therefore, each
title and abstract was screened by two reviewers.
Any discrepancies between reviewers were resolved
by discussion; if necessary, by obtaining the full text
article; and by consultation of a fourth author.
The interrater reliability statistics were very
good (Cohen, 1960). Cohen’s weighted kappas
were 0.81 (second and last author), 0.82 (first and
last author) and 0.82 (first and second author) for
the screening of titles and abstracts (outcomes:
inclusion, exclusion, or doubt). There was disagree-
ment among the reviewers in 8 to 10% of the 2,994
studies. Most disagreements were resolved by
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 2: 59–85 | APRIL 2011
Chronic health conditions B. Oeseburg et al.

discussion between the reviewers. In 12 unsure
cases, the full text of the article was obtained
because eligibility could not be determined from
the title and abstract alone. In 2 cases of remaining
doubt, the fourth author was consulted.
Data Extraction
We obtained and analyzed full texts of
potentially eligible studies. Teams of two reviewers
independently assessed all studies identified for full-
text analysis; the first author analyzed all the
studies, whereas the second and last author
analyzed about half of these studies. The reviewers
used a structured data form based on Strengthening
the Reporting of Observational Studies in Epide-
miology (STROBE) checklist to extract the key
data for the assessment of the methodological
quality of the included studies (von Elm et al.,
2007).
For 570 studies eligible for methodological
quality assessment (values: low, weak to medium,
good and high), reviewers disagreed on 16% to 17%
of the studies. However, Cohen’s (1960) weighted
kappas were very good .85 (first and last authors)
and .89 (first and second authors) because the
interrater disagreements were smaller compared to
the interrater disagreements when screening titles
and abstracts. All disagreements were resolved by
discussion between the reviewers.
Assessment of Methodological Quality
There is no gold standard for assessing the
quality of observational studies (Mallen, Peat, &
Croft, 2006); therefore, we developed a method
based on the domains that are of importance for the
internal and external validity of the studies. We
assessed the methodological quality of the eligible
studies by examining the following characteristics:
contextual information, population (bias), selec-
tion (bias), outcome measures reliability, results,
and confounders. We assigned weights to each
characteristic, taking into account the importance
of each characteristic for internal and external
validity (Mallen et al., 2006; Nguyen, Bezemer,
Habets, Prahl-Andersen, 1999; Sanderson, Tatt, &
Higgines, 2007). The appraisal of the overall
methodological quality of each study was based on
a total score on the different indicators of these
characteristics (see Table 1).
We calculated the total quality scores for each
study by summing up the score on each indicator
(range from 0 to 11 points) and classified the
quality scale scores into the following ordinal
categories: low quality (score , 6), weak to
medium quality (score 6 and 7), good quality (score
8 and 9), and high quality (score 10 and 11) (El Baz
et al., 2007; Verhagen et al., 2000). We excluded
studies with a low methodological quality from
further analyses.
Analysis and Synthesis
We first assessed interrater reliability by
calculating Cohen’s weighted kappas with MED-
CALC v9.2.0.2. for the screening of titles and
abstracts and for the methodological quality
assessment (Cohen, 1960). Subsequently, we
grouped the prevalence rates of the included studies
by somatic chronic health conditions (epilepsy,
cerebral palsy, visual problems, hearing problems,
and miscellaneous somatic chronic health condi-
tions); congenital malformations (genetic–chromo-
somal/sex-linked malformations and other chromo-

Table 1 Indicators and Score Range of the Methodological Characteristics

Trait Indicator Scorea
Contextual information Description of the study (design, IDb levels, chronic health 0–1
condition, and sociodemographic characteristics)
Population (bias) Inclusion and exclusion criteria 0–3
Response (bias) Response rate 0–3
Outcome measures reliability Diagnosis of ID and chronic health condition according to 0–2
professional standards or extracted from medical case files or
registers
Results Results and control for confounders 0–2
a
Lowest score5 low quality on the indicator; highest score 5 high quality on this indicator. bIntellectual
disability.

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INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
Chronic health conditions
somal, endocrine/metabolic diseases malforma-
tions); pervasive developmental disorder (autistic
disorder, pervasive developmental disorder other
than autistic disorder); attention-deficit/hyperac-
tivity disorder /hyperkinetic disorder; and miscella-
neous psychiatric disorders. The weighted mean
prevalence rate and the 95% confidence intervals
(CIs) were calculated if more than two studies
reported about a disease. The weighted mean was
used to aggregate the prevalence rates of the
different chronic health conditions that we found
in each study to a single resultant score. Studies
with large populations contribute more to the
weighted mean than do smaller ones. The following
equation was the formula weighted mean:
Weighted mean
P epilepsy (n 5 14); cerebral palsy (n 5 11); visual
ðprevalence rate|number of respondentsÞ
~ P
ðnumber of respondentsÞ
Search for Trials
Figure 1 shows the study selection process. The
database search resulted in 3,216 potentially
relevant studies: 2,478 Medline, 510 Cinahl, and
228 PsycINFO; 241 of these were duplicates. The
screening of the reference lists of the included
studies added another 19 studies, resulting in a total
number of 2,994 studies. After screening the titles,
we excluded 2,424 studies because they did not
meet the inclusion criteria. After full-text analysis,
we eliminated another 539 studies because (a) study
exclusively about subpopulations of children with a
specific biomedical cause of intellectual disability
(n 5 170); selective population or low response rate
(n 5 107); did not report about chronic health
condition or intellectual disability (n 5 92);
review, case report, or comment/letter (n 5 82);
Figure 1 Flow diagram of study selection process.
62 ’American Association on Intellectual and Developmental Disabilities
VOLUME 49, NUMBER 2: 59–85 | APRIL 2011
B. Oeseburg et al.
age-range too broad (n 5 65); diagnoses made
based on screening instruments (n 5 23). Finally,
31 studies were included (Table 2).
Results
Description of the Studies
In Table 2, the characteristics of the 31
included studies are presented. Sixteen studies were
classified as high quality methodological studies;
13, as good quality; and 2, as weak to medium
quality. The studies were predominantly conducted
in Europe (n 5 17). Six studies were from North
America; 2, South Africa; 2, Australia, 2, Asia; and
2, Israel. Most of the studies (n 5 22) were focused
on more than one chronic health condition:
problems (n 5 4); hearing problems (n 5 5);
miscellaneous somatic chronic health conditions (n
5 7); congenital malformations genetic–chromo-
somal/sex-linked (n 5 10); congenital malforma-
tions, other chromosomal, endocrine/metabolic
diseases (n 5 9); autistic disorder (n 5 11); pervasive
developmental disorder other than autistic disorder
(n 5 7); attention-deficit/hyperactivity disorder/
hyperkinetic disorder (n 5 8); and miscellaneous
psychiatric disorders (n 5 7). All researchers
reported about children (, 19 years). However, 7
studies also included young adults with a maximum
age of 22 years. There was a huge variation in the size
of the population with intellectual disability sur-
veyed (range: 64 to 11,892). Response rates were
generally high (67% to 100%); only 6 studies had a
response rate below 80%.
In most studies the researchers recruited the
children from special schools and certain health or
social services: special schools and health services
(n 5 8), special schools, health and social
services (n 5 7), special schools (n 5 3), private
households (n 5 3), health and social services (n 5
2), health services (n 5 2), special schools and
social services (n 5 1), special schools day-care and
residential centers (n 5 1), special schools and
training center (n 5 1), residential centers (n 5 1),
community registers (n 5 1), and department of
developmental services (n 5 1).
Methods of Diagnosis and the
Classification Framework
The various methods used in the assessment of
the diagnoses of intellectual disability and of
 Table 2 Characteristics of the Included Studies
No. of
Age subjects Response Recruitment
Study Quality Country Chronic health condition Level of IDa group with ID rate (%) population with ID
Nordin et al. Good Sweden Epilepsy, CP, AD, PDD other Mild–profound 3–18 101 100 Special schools &
(1996) than AD habilitation centers
Steffenburg Good Sweden Epilepsy Mild–profound 8–16 378 100 Pediatric (outpatient)
Chronic health conditions

et al. (1996) clinics, psychiatric

(outpatient) clinics,
and habilitation
center
Van Good Netherlands Epilepsy, CP, visual Mild–profound 0–19 1,026 72 Residential centers
Schrojenstein problems, hearing
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

Lantman problems, miscellaneous

et al. (1997) somatic chronic health
conditions, miscellaneous
psychiatric disorders
Yeargin-Allsop High USA Miscellaneous somatic Mild–profound 10–12 715 95 Schools, health and
et al. (1997) chronic, congenital social services
malformations

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Hou et al. High Taiwan Miscellaneous somatic Mild–profound 6–18 11,892 100 Schools, outpatient
(1998) chronic, congenital clinic, and
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malformations institutions
49,

Fernell (1998) Good Sweden Epilepsy, CP, hearing Moderate–profound 3–16 64 100 Pediatric (outpatient)
problems, congenital clinic and social
malformations, AD, PDD services
NUMBER

other than AD
Cans et al. Good France CP, miscellaneous somatic Moderate–profound 7–16 1,150 100 Special schools
(1999) chronic health conditions,
2: 59–85

congenital malformations
|

Airaksinen High Finland Epilepsy, CP, congenital Mild–profound 0–18 151 85 Schools and social
et al. (2000) malformations, PDD other services
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63
Table 2 continues
 Table 2 Continued

64
No. of
Age subjects Response Recruitment
Study Quality Country Chronic health condition Level of IDa group with ID rate (%) population with ID
Lewis et al. Good Australia Epilepsy Mild–profound 8–22 392 100 Schools, health and
(2000) social services
Merrick et al. Good Israel HIV Mild–profound 0–18 1,321 100 Schools, health and
Chronic health conditions

(2000) social services

Strømme & High Norway AD, PDD other than AD, Mild–profound 8–13 178 96 Special schools and
Diseth hyperkinetic disorder, health services
(2000) miscellaneous psychiatric
disorders
Strømme & High Norway Epilepsy, CP, miscellaneous Mild–profound 8–13 178 96 Special schools and
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

Hagberg somatic chronic health health services

(2000) conditions, congenital
malformations
Magnusson Weak to Iceland AD, PDD other than AD Mild–profound 5–14 Not given Hospital and
et al. medium diagnostic center
(2001) for PDD
Molteno et al. Weak to South Epilepsy, CP, AD, ADHD Mild–profound 6–18 355 100 Special schools &
(2001) medium Africa training center
Christianson High South Epilepsy, CP, hearing Borderline– 2–9 238 100 Private households
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et al. (2002) Africa problems, congenital profound

49,

malformations
Koskentausta High Finland Epilepsy, AD, PDD other than Mild–profound 6–13 155 100 Special schools,
et al. (2002) AD, hyperkinetic disorder, hospitals and
NUMBER

miscellaneous psychiatric rehabilitation

disorders center
Dekker et al. Good Netherlands Epilepsy, congenital Borderline– 6–18 474 87 Special schools
2: 59–85

(2003) malformations, ADHD, moderate

|

miscellaneous psychiatric
disorders
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Table 2 continues

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2011
 Table 2 Continued

No. of
Age subjects Response Recruitment
Study Quality Country Chronic health condition Level of IDa group with ID rate (%) population with ID
Emerson (2003) High UK Hyperkinetic disorder, Not given 5–15 264 83b Private households
miscellaneous psychiatric
disorders
Chronic health conditions

Jeliffe- High USA Epilepsy, CP Mild–profound 7–9 613 100 Department of

Pawlowski developmental
et al. (2003) services
Morgan et al. High UK Epilepsy Mild–profound 0–19 258 100c Hospitals and
(2003) outpatient clinics
and social services
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

de Bildt et al. High Netherlands AD, PDD other than AD Mild–profound 4–18 825 78 Special schools, day
(2005) care, and residential
centers
Zhang (2005) High China CP, visual problems, hearing Mild–profound 2–6 79 100 Community registers
problems, miscellaneous
somatic chronic health
conditions, congenital

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malformation, AD
Bradley et al. Good Canada AD Mild–profound 14–20 171 67 Schools, health and
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(2006a) social services

49,

Bradley et al. Good Canada AD Mild–profound 14–20 171 67 See Bradley et al.
(2006b) (2006a)
Voigt et al. Good USA ADHD Borderline–mild 6–18 70 100 Schools and primary
NUMBER

(2006) and special medical

care providers
Emerson et al. High UK Hyperkinetic disorder, Not given 5–16 641 76b See Emerson, 2003
2: 59–85

(2007) miscellaneous psychiatric

|

disorders
Nielsen et al. High Denmark Visual problems Mild–profound 4–15 923 82 Schools and pediatric
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(2007a) clinics
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Table 2 continues
66
Chronic health conditions

Table 2 Continued

No. of
Age subjects Response Recruitment
Study Quality Country Chronic health condition Level of IDa group with ID rate (%) population with ID
Nielsen et al. High Denmark Epilepsy, CP, visual Mild–profound 4–15 923 82 See Nielsen et al.
(2007b) problems, hearing (2007a)
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

problems
Petterson et al. High Australia Congenital malformations Mild–profound 1–18 6,106 100 Schools, health and
(2007) social services
Bryson et al. Good Canada AD Mild–profound 14–20 171 67 See Bradley et al.
(2008) (2006a)
Gothelf et al. Good Israel ADHD, miscellaneous Mild–moderate 12–21 87 87 Special schools
(2008) psychiatric disorders
Note. AD 5 autistic disorder, ADHD 5 attention deficit/hyperactivity disorder, CP 5 cerebral palsy, HIV 5 human immunodefiency virus, PDD 5 pervasive
developmental disorder.
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a
Intellectual disability. bResponse rate in the subsample of children and adolescents with intellectual disability is not available; instead, we used the
49,

response rate of the total population of children and adolescents in the survey. cWe used a subset of the data that was provided to us by the authors.
NUMBER
2: 59–85
|
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INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
Chronic health conditions
chronic health conditions are presented in Table 3
in addition to their classification frameworks.
Intellectual disabilities. In 20 studies intellectual
disability was assessed with intelligence tests; in 14
studies, in combination with developmental tests.
Six studies included children and adolescents who
were eligible for health, education, and social
services for people with intellectual disability. In
2 studies the diagnosis of intellectual disability was
based on primary caregiver and/or teacher reports.
One study included children and adolescents
eligible for social services for people with intellec-
tual disability or diagnosed with intellectual
disability by school achievement and/psychological
tests, researchers in one study used developmental
tests for establishing intellectual disability, and in
one study the intellectual disability diagnosis was
extracted from the family history and medical
records.
Chronic health conditions. In 17 studies the
diagnoses of chronic health conditions was made by
clinical examination or extracted from registers,
medical files, or from blood samples. In 14 studies
investigators used multiple methods of diagnosis, in
different combinations, for establishing the diag-
nosis. In most studies that were focused on somatic
chronic health conditions or congenital malforma-
tions, the researchers did not use a classification
system for the diagnoses they reported. The
International League Against Epilepsy criteria were
used in 3 of the 14 studies about epilepsy. The
International Association for Prevention of Blind-
ness criteria were used in 1 of the 4 studies in which
researchers reported about visual problems. Only 3
studies used the ICD 9 or 10 as a classification
system for different somatic chronic health condi-
tions or congenital malformations. The DSM or the
ICD was used in most studies about pervasive
developmental disorder or psychiatric disorders. In
4 studies, the investigators did not use a classifica-
tion system for the pervasive developmental
disorder or psychiatric disorders diagnoses they
reported.
Chronic Health Conditions
Table 3 presents the prevalence rates of
chronic health conditions in the included studies
and the methods of diagnosis and classification
framework that were used by the researchers. The
weighted mean prevalence rate and the 95% CI of
the chronic health conditions that were reported by
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B. Oeseburg et al.
investigators in more than 2 studies are presented in
Table 4.
Epilepsy. Prevalence rates of epilepsy were
reported in 14 studies and ranged from 5.5% to
35.0%. The weighted mean prevalence rate was
22.0/100 (CI 20.8–23.2).
Cerebral palsy. Prevalence rates of cerebral
palsy were reported in 11 studies and ranged from
8.4% to 33.8%. The weighted mean prevalence rate
was 19.8/100 (CI 18.6–21.1).
Visual problems. In 4 studies researchers report-
ed about visual problems such as refractive errors,
strabismus, visual acuity, visual field, or visual
impairment in general. Prevalence rates ranged
from 2.2% to 26.8%. We were not able to calculate
a weighted mean prevalence rate for the different
visual problems because of the variability between
the studies regarding outcomes.
Hearing problems. Five studies were about
hearing impairment or disability in general. Prev-
alence rates ranged from 0.0% to 7.1%. The
weighted mean prevalence rate was 4.5/100 (CI
3.4–5.7).
Miscellaneous somatic chronic health conditions.
Researchers in 7 studies reported prevalence rates
of miscellaneous somatic chronic health condi-
tions, such as chronic obstructive pulmonary
disease (8.9%), gastric and esophageal diseases
(6.9%), back and neck disorders (6.9%), osteoar-
thropathia (2.5%), cerebrovascular accident (range:
0.3% to 2.5%), Reye syndrome (0.3%), human
immunodeficiency virus (0.0%), and other chronic
health conditions (4%). The weighted mean
prevalence rate for cerebrovascular accident was
2.0/100 (CI 1.8–2.3). We were not able to calculate
a weighted mean prevalence rate for the other
chronic health conditions.
Congenital malformations genetic–chromosomal
and sex-linked disorders. Ten studies were focused
on congenital chromosomal malformation. Preva-
lence rates of Down syndrome, fragile X, cri-du-
chat, and disorders other than Down syndrome
chromosomal malformation and prevalence ranged
from 0.1% to 20.3% for the different disorders. The
weighted mean prevalence rate for Down syndrome
was 11.0/100 (CI 5 10.5–11.4); for fragile X, 1.9/
100 (CI 5 1.6–2.1); for cri-du-chat, 0.2/100 (CI 5
0.2–0.3); and for malformations other than Down
syndrome, 3.1/100 (CI 5 2.9– 3.3).
Congenital malformations other chromosomal, en-
docrine/metabolic diseases. Prevalence rates of congen-
ital malformations other chromosomal, endocrine/
67
68
Table 3 Prevalence Rates of Chronic Health Conditions (CHC), Methods of Diagnosis, and Classification Framework
Method of Classification Method of Classification
Study % n Disorder diagnosis ID framework ID diagnosis CHC framework CHC
Epilepsy
Nordin et al. (1996) 22.0 22/101 – Intell. test Not given Medical files Not given
Steffenburg et al. 26.0 98/378 – Intell. & devel. tests Not given Register ILAE
(1996)
Chronic health conditions

Van Schrojenstein 27.0 27/101 – Eligibility for Not given Medical files ICD 9
Lantman et al. (1997) residential centers
Fernell (1998) 26.6 17/64 – Intell. & devel. tests Not given Medical files Not given
Airaksinen et al. (2000) 21.0 32/151a – School achievement/ ICD 10 Clinical exam ILAE
psychological tests
or eligibility for
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

social services
Lewis et al. (2000) 29.0 115/392 – Intell. tests DSM IV Clinical exam Not given
Strømme et al. (2000b) 19.7 35/178 Intell. & devel. tests DSM IV Clinical exam ILAE/ICD 10
Molteno et al. (2001) 23.7 84/355 – Eligibility for special Not given Not given Not given
schools
Christianson et al. 15.5 37/238 – Intell. & devel. tests Not given Clinical exam Not given
(2002)
Koskentausta et al. 35.0 55/155 – Intell. & devel. tests ICD 10 Medical files Not given
(2002)
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Dekker et al. (2003) 5.5 26/474 – Eligibility for special Not given Not given Not given
49,

schools
Jeliffe-Pawlowski et al. 26.1 160/613 – Intell. & devel. tests Not given Medical files Not given
(2003)
NUMBER

Morgan et al. (2003) 27.9 72/258b – Eligibility for social ICD 9/ICD 10 Register ICD 9 or 10
services
2: 59–85

Nielsen et al. (2007b) 19.5 163/838 – Intell. & devel. tests Not given Register Not given
|

Cerebral palsy
Nordin et al. (1996) 8.9 9/101 – Intell. test Not given Medical files Not given
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 Table 3 Continued

Method of Classification Method of Classification

Study % n Disorder diagnosis ID framework ID diagnosis CHC framework CHC
Van Schrojenstein 29.0 29/101 – Eligibility for Not given Medical files ICD 9
Lantman et al. (1997) residential centers
Fernell (1998) 23.4 15/64 – Intell. & devel. tests Not given Medical files Not given
Cans et al. (1999) 23.4 269/1150 – Intell. test ICD 10 Medical files Not given
Chronic health conditions

Airaksinen et al. (2000) 10.6 16/151 – School achievement/ ICD 10 Clinical exam Not given
psychological tests
or eligibility for
social services
Stromme et al. (2000b) 14.0 25/178 – Intell. & devel. tests DSM IV Clinical exam ICD 10
Molteno et al. (2001) 33.8 120/355 – Eligibility for special Not given Not given Not given
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

schools
Christianson et al. 8.4 20/238 – Intell. & devel. tests Not given Clinical exam Not given
(2002)
Jeliffe-Pawlowski et al. 18.4 113/613 – Intell. & devel. tests Not given Medical files Not given
(2003)
Zhang (2005) 20.3 16/79 – Devel. tests ICD 10 Clinical exam Not given
Nielsen et al. (2007b) 15.9 133/838 – Intell. & devel. tests Not given Register Not given

’American Association on Intellectual and Developmental Disabilities

Visual problems
Van Schrojenstein 15.2 15/101 Visual impairment Eligibility for Not given Medical files ICD 9
VOLUME

Lantman et al. (1997) residential centers

49,

Zhang (2005) 5.1 4/78 Visual impairment Devel. tests ICD 10 Clinical exam Not given
Nielsen et al. (2007a) 10.5 97/923 Visual acuity Intell. & devel. tests Not given Clinical exam IAPB
impairment
NUMBER

2.2 20/923 Visual field

affected
2: 59–85

Nielsen et al. (2007b) 15.3 136/886 Hyperopia Intell. & devel. tests Not given Clinical exam IAPB
|

10.8 96/886 Myopia

20.6 182/886 Astigmatism
7.2 64/886 Anisometropia
APRIL

26.8 224/915 Strabismus

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Table 3 continues
 Table 3 Continued

70
Method of Classification Method of Classification
Study % n Disorder diagnosis ID framework ID diagnosis CHC framework CHC

Hearing problems
Van Schrojenstein 6.9 7/101 Hearing Eligibility for Not given Medical files ICD 9
Lantman et al. (1997) impairment residential centers
Chronic health conditions

Fernell (1998) 4.7 3/64 Hearing Intell. & devel. tests Not given Medical files Not given
impairment
Christianson et al. (2002) 7.1 17/238 Auditory disability Intell. & devel. tests Not given Clinical exam Not given
Zhang (2005) 0.0 0/79 Hearing disability Devel. tests Not given Clinical exam Not given
Nielsen et al. (2007b) 3.8 32/838 Hearing Intell. & devel. tests Not given Register Not given
impairment
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

Miscellaneous somatic CHC

Van Schrojenstein 8.9 9/101 COPD Eligibility for Not given Medical files ICD 9
Lantman et al. (1997) 6.9 7/101 Gastric & residential centers
esophageal
diseases
6.9 7/101 Back & neck
4.0 4/101 Other chronic
health
Yeargin-Allsop et al. 0.3 2/715 Cerebrovascular Intell. test DSM III Medical files Not given
VOLUME

(1997) accident
49,

Hou et al. (1998) 2.2 263/11892 Cerebral/ Family history, Not given Clinical Not given
intracranial medical records, evaluation,
hemorrhage blood and urine blood sample
NUMBER

0.3 41/11892 Reye syndrome tests

Cans et al. (1999) 1.5 17/1150 Cerebral Intell. test ICD 10 Medical files Not given
hemorrhage
2: 59–85

Merrick et al. (2000) 0.0 0/1321 HIV Eligibility for social Not given Blood sample Not given
|

and educational
services for ID
APRIL

Table 3 continues

’American Association on Intellectual and Developmental Disabilities

B. Oeseburg et al.
2011
 Table 3 Continued

Method of Classification Method of Classification

Study % n Disorder diagnosis ID framework ID diagnosis CHC framework CHC
Strømme et al. (2000b) 0.6 1/178 Cerebrovascular Intell. & devel. tests DSM IV Medical files Not given
accident
Zhang (2005) 2.5 2/79 Cerebrovascular Devel. tests ICD 10 Clinical exam Not given
Chronic health conditions

accident
2.5 2/79 Osteoarthropathia
Congenital malformations
genetic-chromosomal and
sex-linked
Yeargin-Allsop et al. 4.8 34/715 DS Intell. test DSM III Medical files Not given
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

(1997) 0.1 1/715 Fragile X

0.1 1/715 Cri-du-chat
0.3 2/715 Other than DS
Hou et al. (1998) 13.1 1557/11892 DS Family history, Not given Clinical Not given
2.0 233/11892 Fragile X medical records, evaluation,
0.2 26/11892 Cri-du-chat blood & urine tests blood sample
3.3 398/11892 Other than DS

’American Association on Intellectual and Developmental Disabilities

Fernell (1998) 20.3 13/64 DS Intell. & devel. tests Not given Medical files Not given
Cans et al. (1999) 16.1 185/1150 DS Intell. test ICD 10 Medical files Not given
2.3 26/1150 Other than DS
VOLUME

Airaksinen et al. (2000) 17.2 26/151 All chromosomal School achievement, ICD 10 Clinical exam Not given
49,

psychological tests
or eligibility for
NUMBER

social services
Strømme et al. (2000b) 9.6 17/178 DS Intell. and devel. DSM IV Medical files Not given
1.7 3/178 Fragile X tests
2: 59–85

1.1 2/178 Cri-du-chat

|

3.9 7/178 Other than DS

Christianson et al. (2002) 2.1 5/238 DS Intell. and devel. Not given Clinical exam Not given
APRIL

tests
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Table 3 continues
 Table 3 Continued

Method of Classification Method of Classification

72
Study % n Disorder diagnosis ID framework ID diagnosis CHC framework CHC
Dekker et al. (2003) 5.3 25/474 DS Eligibility for special Not given Not given Not given
schools
Zhang (2005) 2.5 2/79 All chromosomal Devel. tests ICD 10 Clinical exam Not given
Petterson et al. (2007) 7.3 446/6106 DS Eligibility for social Not given Register British
3.0 182/6106 Other than DS and educational Pediatric
Chronic health conditions

services Association,
ICD-9
Congenital malformation other
chromosomal, endocrine/
metabolic diseases
Yeargin-Allsop et al. 1.3 9/715 Malformations of Intell. test DSM III Medical files Not given
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

(1997) the nervous

systemc
2.0 14/715 Other
malformationsd
0.8 6/715 Metabolic,
endocrine-/
thyroid-glande
Hou et al. (1998) 2.7 322/11892 Other Family history, Not given Clinical Not given
malformations medical records, evaluation,
VOLUME

0.2 41/11892 Metabolic, blood and urine blood sample

endocrine-/ tests
49,

thyroid-gland
disorders
NUMBER

Fernell (1998) 14.1 9/64 Malformations of Intell. & devel. tests Not given Medical files Not given
the nervous
system
2: 59–85

7.8 5/64 Other

|

malformations
1.6 1/64 Metabolic,
APRIL

endocrine-/

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B. Oeseburg et al.
2011

thyroid-gland
Table 3 continues
 Table 3 Continued

Method of Classification Method of Classification

Study % n Disorder diagnosis ID framework ID diagnosis CHC framework CHC
Cans et al. (1999) 2.2 25/1150 Malformations of Intell. test ICD 10 Medical files Not given
nervous system
6.4 74/1150 Other
malformations
Chronic health conditions

1.8 21/1150 Metabolic,

endocrine-/
thyroid-gland
disorders
Airaksinen et al. (2000) 12.0 18/151 Malformations of School achievement, ICD 10 Clinical exam Not given
nervous system psychological tests
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

11.3 17/151 Other or eligibility for

malformations social services
Strømme et al. (2000b) 7.3 13/178 Malformations of Intell. & devel. tests DSM IV Medical files Not given
nervous system
6.7 12/178 Other
malformations
5.2 4/178 Metabolic,

’American Association on Intellectual and Developmental Disabilities

endocrine-/
thyroid-gland
Christianson et al. (2002) 8.4 20/238 Malformations of Intell. & devel. tests Not given Clinical exam Not given
VOLUME

nervous system
49,

0.8 2/238 Other

malformations
NUMBER

Zhang (2005) 2.5 2/79 Other Devel. tests ICD 10 Clinical exam Not given
malformations
Petterson et al. (2007) 5.6 342/6106 Malformations of Eligibility for social Not given Register British
2: 59–85

the nervous and educational Pediatric

|

system services Association,

ICD-9
APRIL

13.1 799/6106 Other

malformations
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Table 3 continues
 Table 3 Continued

74
Method of Classification Method of Classification
Study % n Disorder diagnosis ID framework ID diagnosis CHC framework CHC

Autistic disorder
Nordin et al. (1996) 8.9 9/101 Autistic disorder Intell. tests Not given ABC, CARS, DSM III R
clinical exam
Fernell (1998) 17.2 11/64 Autism Intell. & devel. tests Not given Medical files Not given
Chronic health conditions

Strømme et al. (2000a) 4.5 8/178 Childhood autism Intell. & devel. tests DSM IV Clinical exam ICD 10
Magnusson et al. (2001) Not 32 Childhood autism Intell. & devel. tests Not given ADI-R, CARS, ICD 9 or 10
given clinical exam
Molteno et al. (2001) 9.4 12/128 Autism Eligibility for special Not given DBC-T and CSI, Not given
schools clinical exam
Koskentausta et al. 5.2 8/155 Childhood autism Intell. & devel. tests ICD 10 Medical files ICD 10
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

(2002)
de Bildt et al. (2005) 8.8 Weighted AD Intell. & devel. tests DSM IV-TR PDD-MRS, DSM IV TR
score/ ADI-R,
825 ADO-G:
clinical exam
Zhang (2005) 10.1 8/79 AD Devel. tests ICD 10 CABS, CARS, DSM IV
clinical exam
Bradley et al. (2006a,b), 25.1 43/171 Autism Intell. & devel. tests Not given ADI-R, clinical DSM IV
Bryson et al. (2008) exam
VOLUME

PDD/AD
49,

Nordin et al. (1996) 3.0 3/101 Autistic-like Intell. tests Not given ABC, CARS, DSM III R
disorder clinical exam
NUMBER

7.9 8/101 Autistic

disorder-NOS
Fernell (1998) 6.3 4/64 Autistic symptoms Intell. & devel. tests Not given Medical files Not given
2: 59–85

Airaksinen et al. (2000) 0.6 1/151 Rett School achievement, ICD 10 Clinical exam Not given
|

psychological tests,
or eligibility for
APRIL

social services

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B. Oeseburg et al.
2011

Table 3 continues
 Table 3 Continued

Method of Classification Method of Classification

Study % n Disorder diagnosis ID framework ID diagnosis CHC framework CHC
Strømme et al (2000a) 0.6 1/178 Rett syndrome Intell. & devel. tests DSM IV Clinical exam ICD 10
0.6 1/178 Asperger
2.5 4/178 PDD unspecified
Chronic health conditions

Magnusson et al. (2001) Not 13/Not Atypical autism Intell. & devel. tests Not given ADI-R, CARS, ICD 9 or 10
given given clinical exam
Koskentausta et al. 7.7 12/155 Atypical autism Intell. & devel. tests ICD 10 Medical files ICD 10
(2002)
de Bildt et al. (2005) 7.9 Weighted PDD-NOS Intell. & devel. tests DSM IV TR PDD-MRS, DSM IV TR
score/ ADI-R,
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

825 ADOS-G,
clinical exam
ADHD/hyperkinetic disorder
Strømme et al. (2000a) 16.0 28/178 Hyperkinetic Intell. & devel. tests DSM IV Clinical exam ICD 10
Molteno et al. (2001) 6.3 8/128 ADHD Eligibility for special Not given DBC-T en CSI: Not given
schools clinical exam

’American Association on Intellectual and Developmental Disabilities

Koskentausta et al. 6.5 10/155 Hyperkinetic Intell. & devel. tests ICD 10 Medical files ICD 10
(2002)
Dekker et al. (2003) 5.9 28/474 ADHD Eligibility for special Not given DISC-IV-P, DSM IV
VOLUME

schools clinical exam

49,

Emerson (2003); Emerson 8.3 53/641 Hyperkinetic Primary caregiver Not given DAWBA, clinical ICD 10
et al. (2007) and/or teacher exam
NUMBER

reported
Voigt et al. (2006) 30.0 21/70 ADHD Intell. test Not given ADHD question- DSM IV
naires,
2: 59–85

clinical exam
|

Gothelf et al. (2008) 18.3 16/87 ADHD Intell. test Not given K-SADS-PL, DSM IV TR
clinical exam
APRIL

Table 3 continues
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76
Table 3 Continued

Method of Classification Method of Classification

Study % n Disorder diagnosis ID framework ID diagnosis CHC framework CHC

Psychiatric disorders
Chronic health conditions

Van Schrojenstein 2.0 2/101 Affective Eligibility for Not given Medical files ICD 9
Lantman et al. (1997) 9.9 10/101 Other psychiatric residential centers
Strømme et al. (2000a) 3.0 6/178 Conduct Intell. & devel. tests DSM IV Clinical exam ICD 10
6.0 10/178 Other behavioral/
emotional
3.0 5/178 Anxiety/phobic/
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

OCD
1.0 1/178 Tic
Koskentausta et al. 0.6 1/155 Conduct Intell. & devel. tests ICD 10 Medical files ICD 10
(2002) 0.6 1/155 Recurrent
depressive
1.3 2/155 Emotional
Dekker et al. (2003) 3.0 14/474 Conduct Eligibility for special Not given DISC-IV-P: DSM IV
13.9 66/474 ODD schools clinical
21.9 103/474 Any anxiety exam
4.4 21/474 Any mood
VOLUME

Emerson (2003) Emerson 8.4 54/641 Conduct Primary caregiver Not given DAWBA, ICD 10
49,

et al. (2007) 11.1 71/641 ODD and/or teacher clinical exam

1.4 9/641 Any depressive reported
NUMBER

12.0 77/641 Any emotional

11.4 73/641 Any anxiety
0.8 5/641 Tic
2: 59–85

0.2 1/641 Eating

|

Table 3 continues
APRIL

’American Association on Intellectual and Developmental Disabilities

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2011
 Table 3 Continued

Method of Classification Method of Classification

Study % n Disorder diagnosis ID framework ID diagnosis CHC framework CHC
Gothelf et al. (2008) 4.6 4/87 Conduct Intell. test Not given K-SADS-PL, DSM IV TR
Chronic health conditions

13.8 12/87 ODD CY-BOCS,

14.0 12/87 Any mood SBS, clinical
39.0 30/87 Any anxiety exam
2.2 2/87 Any psychotic
4.6 4/87 Tic disorder
3.4 3/87 Eating disorder
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

8.0 7/87 Impulse control

disorder
4.6 4/87 Somatoform disorder
17.2 15/87 Enuresis/encopresis
Note. Abbreviations for diseases: CHC 5 chronic health conditions, ID 5 intellectual disabilities, COPD 5 chronic obstructive pulmonary disease, NOS 5
not otherwise specified, ODD 5 oppositional defiant disorder, PDD 5 pervasive developmental disorder, OCD 5 obsessive compulsive disorder.

’American Association on Intellectual and Developmental Disabilities

Abbreviations for classification framework: DSM 5 Diagnostic and Statistical Manual of Mental Disorders, IAPB 5 International Association for Prevention of
Blindness, ILAE 5 International League Against Epilepsy, ICD 5 International Statistical Classification of Diseases. Abbreviations method of diagnosis: ABC
5 Autism Behavior Scale, ASQ 5 Autism Screening Questionnaire, ADI-R 5 Autism Diagnostic Interview-Revised, ADOS-G 5 Autism Diagnostic
VOLUME

Observation Schedule-Generic, CABS 5 Clancy Autism Behavior Scale, CARS 5 Children Autism Rating Scale, CSI 5 Child Symptom Inventory, CY-BOCS 5
49,

Children’s Yale-Brown Obsessive Compulsive Scale, DAWBA 5 Development and Well-Being Assessment, DBC-T 5 Developmental Behavior Checklist-
Teacher version, DISC-IV-P 5 Diagnostic Schedule for Children-Parent version, Devel. 5 developmental, Intell. 5 intelligence, K-SADS-PL 5 Kiddie
Schedule for Affective Disorders and Schizophrenia for School Age Children Present and Lifetime Version, PDD-MRS 5 Pervasive Developmental Disorder in
NUMBER

Mentally Retarded Scale, SBS 5 Stereotyped Behavior Scale, VABS 5 Vineland Adaptive Behavior Scales.
a
The result is based on a cohort study when the respondents were 22 years. In a figure about the cumulative probability of developing epilepsy in the
2: 59–85

article, we had the possibility to make an eyeball estimation when the respondents were 18 years. There was no difference between the values at 18 and
|

22 years. bWe used a subset of the data that was provided to us by the authors. cSpina bifida, hydrocephaly. dFor example, Prader-Willi, tuberous sclerosis,
Smith-Lemli-Opit, malformations musculoskeletal system, genital/urinary digestive circulatory system. eFor example, phenylketonuria, hypothyroidism.
APRIL
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INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 49, NUMBER 2: 59–85 | APRIL 2011
Chronic health conditions B. Oeseburg et al.

Table 4 Prevalence Rates Range, Weighted Mean Prevalence Rates, and 95% Confidence Interval (CI) of
Chronic Health Conditions
Prevalence rates Weighted mean
Chronic health condition range (in %) prevalence ratea 95% CI
Somatic
Epilepsy 5.5–35.0 22.0/100 (943/4296) 20.8–23.2
Cerebral palsy 8.4–33.8 19.8/100 (765/3868) 18.6–21.1
Hearing problems 0.0–7.1 4.5/100 (59/1320) 3.4–5.7
Cerebrovascular accident 0.3–2.5 2.0/100 (285/14014) 1.8–2.3
Congenital malformations
Down syndrome 2.1–20.3 11.0/100 (2282/20817) 10.5–11.4
Fragile X 0.1–2.4 1.9/100 (237/12785) 1.6–2.1
Cri du chat 0.1–1.1 0.2/100 (29/12785) 0.2–0.3
Other than Down syndrome 0.3–8.5 3.1/100 (615/20041) 2.9–3.3
Malformation of the nervous system 1.3–14.1 5.1/100 (436/8602) 4.6–5.6
Other malformations 0.8–13.1 6.1/100 (1247/20573) 5.7–6.4
Metabolic or endocrine/thyroid gland disorders 0.2–5.2 0.5/100 (73/13999) 0.4–0.7
Mental
Autistic disorder (AD) 4.5–25.1 10.1/100 (172/1701) 8.8–11.6
PDD categories that are not otherwise specified 2.5–7.9 7.1/100 (89/1259) 5.8–8.6
ADHD/hyperkinetic disorder 5.9–30.0 9.5/100 (164/1733) 8.2–10.9
Conduct disorder 0.6–8.4 5.1/100 (79/1535) 4.1–6.4
Oppositional defiant disorder 11.1–13.9 12.4/100 (149/1202) 10.7–14.4
Any anxiety disorder 11.4–39.0 17.1/100 (206/1202) 15.1–19.4
Tic disorder 0.8–4.6 1.1/100 (10/906) 0.6–2.0
a
n/N 5 number of children with chronic health condition (e.g., epilespy)/total number of children in the
studies concerning this chronic health condition in parentheses.

metabolic diseases were reported in 9 studies.
Researchers reported prevalence rates of malforma-
tions of the nervous system (e.g., spina bifida,
hydrocephaly), other malformations (e.g., Prader-
Willi, tuberous sclerosis, malformations of the
musculoskeletal, genital/urinary, digestive, or circu-
latory system) and metabolic, endocrine/thyroid
gland disorders (e.g., phenylketonuria, hypothyroi-
dis) (range 5 0.8% to 13.1% for the different
disorders). The weighted mean prevalence rate for
malformations of the nervous system was 5.1/100
(CI 5 4.6–5.6); for other malformations, 6.1/100
(CI 5 5.7–6.4); and for metabolic, endocrine/
thyroid gland disorders, 0.5/100 (CI 5 0.4–0.7).
Autistic disorder. Prevalence rates of autistic
disorder were reported in 11 studies and ranged
from 4.5% to 25.1%. The weighted mean preva-
lence rate was 10.1/100 (CI 5 8.8–11.6).
Pervasive developmental disorders other than
autistic disorder. Prevalence rates of this disorder,
including Rett syndrome, Asperger syndrome,
atypical autism, pervasive developmental disor-
der–not otherwise specified (NOS), autistic
symptoms, autistic-like disorder and autistic
disorder-NOS, were reported in 7 studies and
ranged from 0.6% to 7.9% for the different
disorders. Prevalence rates of the pervasive
developmental disorder categories that are NOS,
such as pervasive developmental disorder-NOS,
atypical autism, and autistic disorder–NOS, were
reported in 4 studies and ranged from 2.5% to
7.9%. The weighted mean prevalence rate for
pervasive developmental disorder categories–
NOS was 7.1/100 (CI 5 5.8–8.6). We were not
able to calculate a weighted mean prevalence
rate for the other diseases.
Attention-deficit hyperactivity disorder/Hyperki-
netic disorder. Prevalence rates were reported in 8
studies (range 5 5.9% to 30.0%. The weighted
mean prevalence rate was 9.5/100 (CI 5 8.2–10.9).

78 ’American Association on Intellectual and Developmental Disabilities

INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
Chronic health conditions
Miscellaneous psychiatric disorders. Researchers
in 7 studies reported prevalence rates of miscella-
neous psychiatric disorders. Most frequently men-
tioned were conduct disorder, with prevalence rates
ranging from 0.6% to 8.4%; oppositional defiant
disorder, with prevalence rates ranging from 11.1%
to 13.9%; any anxiety disorder, with prevalence
rates ranging from 11.4% to 39.0%; and tic
disorder, with prevalence rates ranging from 0.8%
to 4.6%. The weighted mean prevalence rate for
conduct disorder was 5.1/100 (CI 5 4.1–6.4); for
oppositional defiant disorder, 12.4/100 (CI 5 10.7–
14.4); for any anxiety disorder, 17.1/100 (CI 5
15.1–19.4); and for tic disorder, 1.1/100 (CI 5 0.6–
2.0). Prevalence rates of enuresis/encopresis, affec-
tive, behavioral/emotional, anxiety/phobic/obses-
sive-compulsive, depressive, emotional, mood, psy-
chotic, eating, impulse control, and somatoform
disorders were also reported, ranging from 0.6% to
17.2% for the different disorders. We were not able
to calculate a weighted mean prevalence rate for
these disorders.
Discussion
This systematic literature review shows high
prevalence rates of a wide range of chronic health
conditions in children with intellectual disability.
We included 31 studies that were focused on a
limited number of chronic health conditions that
had a sufficient methodological quality. In general,
the quality of these studies was good to high.
However, the prevalence rates for most chronic
health conditions varied among the included
studies. The characteristics of the sample, recruit-
ment of the study population, method of diagnosis,
classification framework used, and factors not
examined and appraised in this study, such as the
quality of registers, diagnostic overshadowing, or
the accessibility of healthcare for children with
intellectual disability in different countries, can
contribute to this variation (Borthwick-Duffy,
1994; Bradley et al., 2004; Cooper et al., 2007;
Fletcher & Fletcher, 2005; Jopp & Keys, 2001).
Nevertheless, the prevalence rates of chronic
health conditions in children with intellectual
disability are higher than the prevalence rates
reported in studies of children without intellectual
disability (Bowley & Kerr, 2000; Dykens, 2000;
Fombonne, 2003, 2005; Froehlich et al., 2007;
Hastings, Beck, Daley, & Hill, 2005; Jansen, Krol,
Groothoff, & Post, 2004; Sillanpaa, 1999; Simon-
’American Association on Intellectual and Developmental Disabilities
VOLUME 49, NUMBER 2: 59–85 | APRIL 2011
B. Oeseburg et al.
off, Pickles, Wood, Gringras, & Chadwick, 2007;
Volkmar, Lord, Bailey, Schultz, & Klin, 2004;
Yeargin-Allsopp, Boyle, Van Naarden Braun, &
Trevathan, 2008). We note that in contrast to the
reviews of Fombonne (2003, 2005, 2009), we found
higher prevalence rates of autistic disorder com-
pared to pervasive developmental disorders other
than autistic disorder. An explanation could be the
inclusion of studies in Fombonne’s reviews in which
the researchers reported findings about children
who do not have intellectual disability. Children
with autistic disorder are more likely to have
intellectual disability compared with children who
have pervasive developmental disorder other than
autistic disorder (Yeargin-Allsopp et al., 2003).
However, Bertrand et al. (2001) and Williams,
Thomas, Sidebotham, and Emond (2008) also
reported higher prevalence rates of autistic disorder
compared to pervasive developmental disorder-
NOS in population studies with children with
and without intellectual disability.
Fit With Previous Studies
To our knowledge this is the first systematic
review on chronic health conditions in children
with intellectual disability. Comparison of our
results with other reviews on chronic health
conditions in children with intellectual disability
(Dykens, 2000; Kerker, Owens, Zigler, & Horwitz,
2004; Lhatoo & Sander, 2001; Masi, 1998; Owens,
Kerker, Zigler, & Horwitz, 2006; Roizen & Patter-
son, 2003; Van Schrojenstein Lantman-de Valk &
Walsh, 2008; Whitaker & Read, 2006) is difficult. In
contrast to traditional narrative reviews, we ap-
praised the studies on methodological characteristics
reflecting the internal and external validity.
Strengths and Limitations
A major strength of our study is the very
thorough search strategy that covered all relevant
literature databases and included a check of the
references of the papers that were found. Despite
this, we may still have missed some publications
(e.g., studies that are not indexed well in the
databases). Another strength is that we used a
consensus on chronic health conditions and health
conditions in childhood (0–18 years of age) to
define chronic health condition (Mokkink et al.,
2008), which is operationalized in a list of chronic
health conditions in the ICD (World Health
Organization, 1977, 1992) and the DSM (Ameri-
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INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
Chronic health conditions
can Psychiatric Association, 1980; American Psy-
chiatric Association, 1987, 1994, 2000).
We limit the generalization of the results to the
chronic health conditions reported in the studies
included in our systematic review and to the
particular European ‘‘industrialized countries.’’ We
did not find many studies from the less industrial-
ized countries.
Another limitation is our focus on studies in
which researchers reported about chronic health
conditions in children with intellectual disability
in general. By excluding studies that were focused
exclusively on subpopulations of children with a
specific biomedical cause of intellectual disability,
such as Down syndrome, we are not addressing the
prevalence of syndrome-related health problems
that are associated with these conditions. Al-
though diseases such as congenital heart disorders,
obesity, celiac disease, and thyroid disorders are
very prevalent in children with Down syndrome,
these authors did not sufficiently address them.
Inclusion of studies on children with Down
syndrome in the present study would increase the
prevalence of these conditions for the population
with intellectual disability. However, there are
already reviews available about the prevalence of
chronic health conditions in Down syndrome
(Merrick et al., 2004; Prasher, 1999; Roizen &
Patterson, 2003).
Implications for Clinicians
The high prevalence rates of chronic health
conditions in children with intellectual disability
should alert clinicians, who are crucial in the
identification and registration of chronic health
conditions. Identification begins with a complete
history, including a pre-, peri-. and postnatal
medical history, physical examination, and psycho-
logical and social evaluation (Hou et al., 1998;
Luckasson et al., 2002; Ru, 2008; van Schrojenstein
Lantman-de Valk et al., 2008). Early detection and
adequate treatment of chronic health conditions is
important because these conditions have a signif-
icant negative impact on the well-being and social
participation of children with intellectual disability
and their families (Goddard et al., 2008; Hou et al.,
1998; Luckasson et al., 2002; McDermott et al.,
2007; Newacheck et al., 2006; Strømme & Hag-
berg, 2000; van der Lee et al., 2007; Yeargin-
Allsopp et al., 1997). Moreover, a good diagnostic
work-up according to professional standards accom-
80 ’American Association on Intellectual and Developmental Disabilities
VOLUME 49, NUMBER 2: 59–85 | APRIL 2011
B. Oeseburg et al.
panied with a good registration system are useful
tools to delineate (probable) causes (Strømme &
Diseth, 2000). Evidence on the association between
intellectual disability and chronic health condi-
tions may identify etiologic clues that are necessary
for the early identification of these conditions and
the development and implementation of effective
programs to increase opportunities for children with
intellectual disability (Cans et al., 1999; Kirby,
2002; Luckasson et al., 2002; Petterson, Bourke,
Leonard, Jacoby, & Bower, 2007).
Implications for Research
To validate evidence on the prevalence of
chronic health conditions in children with
intellectual disability, researchers should first
reach consensus about the classification frame-
work that should be used in prevalence studies for
psychiatric disorders in children with intellectual
disability. A promising development is the future
alignment of the DSM-V with the ICD-11, which
will present an opportunity to unify and strength-
en knowledge of global mental health. However,
the debate about the validity of both classification
systems as clinical and research tools has not yet
been resolved (Banzato, 2004; First & Westen,
2007; Kupfer, Regier, & Kuhl, 2008; Moller,
2008). Other developments in this area that
could be used are the Diagnostic Criteria for
Psychiatric Disorders for Use With Adults With
Learning Disabilities/Mental Retardation, devel-
oped by the Royal College of Psychiatrists
(Cooper, Melville, & Einfeld, 2003; Royal College
of Psychiatrists, 2001) or the Developmental
Psychiatric Assessment (Dosen, 2005a, 2005b).
Second, the use of multiple data sources, in
contrast to the one data source strategy used in
most studies, will improve the validity of the
prevalence rates (Yeargin-Allsopp et al., 1997).
Third, transnational comparative population stud-
ies are needed that include less industrialized
countries. Fourth, researchers should improve the
way they report their studies to enable a proper
assessment of internal and external validity. This
may be accomplished by using the recently
developed STROBE guidelines (von Elm et al.,
2007).
Our review shows that caring for children with
intellectual disability could be improved by the
availability of better evidence on the occurrence of
chronic health conditions.
INTELLECTUAL AND DEVELOPMENTAL DISABILITIES
Chronic health conditions
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Received 4/23/09, first decision 1/20/10, accepted 5/7/
10.
Editor-in-Charge: Steven J. Taylor
Authors:
Barth Oeseburg, PhD (e-mail: b.oeseburg@med.
umcg.nl), Researcher; Geke J. Dijkstra, PhD,
Researcher; Johan W. Groothoff, PhD, Professor;
Sijmen A. Reijneveld, PhD, Professor; Daniëlle E.
M. C. Jansen, PhD, Researcher, Department of
Health Sciences and Graduate School for Health
Research (SHARE), PO Box 30.001, University of
Groningen, Groningen 9700 RB, The Netherlands.
The first author is also affiliated with the
Wenckebach Institute and the last author, with
the Department of Sociology, University of
Groningen.
85