Acta Pñdiatr Suppl 445: 55±59.

2004

How common is attention-deficit/hyperactivity disorder? Towards

resolution of the controversy: results from a population-based study
W Barbaresi1, S Katusic2, R Colligan3, A Weaver2, V Pankratz2, D Mrazek3 and S Jacobsen2
Departments of Pediatric and Adolescent Medicine1, Health Sciences Research 2, Psychiatry and Psychology3, Mayo Clinic, Rochester,
USA

Barbaresi W, Katusic S, Colligan R, Weaver A, Pankratz V, Mrazek D, Jacobsen S. How common

is attention-deficit/hyperactivity disorder? Towards resolution of the controversy: results from a
population-based study. Acta Pædiatr 2004; Suppl 445: 55–59. Stockholm. ISSN 0803-5326
Attention-deficit/hyperactivity disorder (AD/HD) is a common behavioral disorder among children,
yet there is uncertainty about many aspects of AD/HD, including its precise frequency of occur-
rence, presence of comorbid conditions, long-term outcomes and the impact of treatment on long-
term outcome. The objectives of the studies described in this paper were to address these important
questions about AD/HD. The study subjects were from a population-based birth cohort, and
included all children born in Rochester, Minnesota, from 1976 to 1982, who remained in the
community after the age of 5 y (n = 5718). Complete medical and school records were available
for all members of the birth cohort, including detailed information about AD/HD symptoms,
psychometric test and questionnaire results, medical and non-medical treatments, and long-term
academic and psychosocial outcomes. This information was used to identify 375 subjects from the
birth cohort with AD/HD, based on well-defined research criteria. The estimated cumulative
incidence of AD/HD at the age of 19 y was 7.5% (95% confidence interval 6.5–8.4). Data from
these 375 subjects with AD/HD will be used in ongoing studies of this disorder.
Key words: Attention-deficit/hyperactivity disorder, comorbidity, incidence, long-term outcome,
medical treatment
WJ Barbaresi, Department of Pediatric and Adolescent Medicine, Mayo Building E931, Mayo
Clinic, 200 First Street SW, Rochester MN 55905-0001, USA, e-mail. Barbaresi.william@mayo.
edu)

Attention-deficit/hyperactivity disorder (AD/HD) is a standing of the rate of occurrence of AD/HD, as well

clinical syndrome and a diagnostic entity in the
Diagnostic and Statistical Manual of Mental Disorders,
4th edition (DSM-IV), which has become the focus of
debate among professionals and a source of confusion
and concern for the lay public. In particular, confusion
about the frequency of occurrence of AD/HD has led to
concern that too many US children are being treated
with stimulant medications. While there is no doubt that
the number of stimulant prescriptions written in the
USA has increased dramatically over the past 20 y, the
available literature fails to provide the information
needed to determine whether this trend reflects over-
treatment, or more complete identification of children
affected by AD/HD (1). This question can only be
answered by first determining precisely the number of
children likely to be affected by AD/HD.
Large-scale epidemiological studies of AD/HD are
complicated by the lack of a definitive marker for case
status (2). The diagnosis of AD/HD requires informa-
tion from a set of detailed questions about symptoms
from multiple settings (3). Previous research efforts
have typically failed to include sufficient detail from
multiple sources to identify AD/HD cases. Under-
as other important information, such as comorbidity,
long-term outcome and the impact of treatment on
outcome, has been limited by studies that have involved
small, referred samples of subjects that cannot be
assumed to be representative of the population of all
children with AD/HD.
This paper describes the findings from a population-
based study of AD/HD, with case identification based
on comprehensive, unique sources of information. In
addition, plans are outlined for a series of studies aimed
at clarifying issues related to the natural history and
treatment of this common developmental and behavior-
al disorder. Recently, the authors published a detailed
description of their methodology and the initial findings
from their studies (4).
Subjects and methods
Subjects
The subjects in this study included all children born
during the years 1976–1982 to mothers residing in the
five townships comprising Independent School District

 2004 Taylor & Francis. ISSN 0803-5326 DOI 10.0180/08035320310021282

56 W Barbaresi et al.
535 (the school district for Rochester, Minnesota), who
remained in Rochester at least until the age of school
entry (age 5 y; n = 5718). Birth certificate data for
subjects included in the study and for those who moved
or died before the age of 5 y (n = 2830) were carefully
analyzed, and only slight differences were found, which
were unlikely to affect the findings of this study (5). The
ability to study the occurrence of AD/HD in this
population-based birth cohort markedly reduces the
biases inherent in studies that involve smaller, clinic-
referred samples.
Study setting and unique sources of information about
attention-deficit/hyperactivity disorder
Another unique aspect of this study is the setting:
Rochester, Minnesota and Olmsted County, in which it
is located. In 1990, the population of Rochester was 70
745, with most residents being white and primarily
middle class. The population of Rochester has uniform
access to high-quality healthcare, with more than 95%
of all inpatient and outpatient care provided locally by
either the Mayo Clinic or the Olmsted Medical Center.
The Rochester Epidemiology Project (REP) is a
resource for population-based research studies on the
residents of Rochester and Olmsted County. The REP
database links the complete medical records of virtually
all residents, including the results from all psychometric
tests, questionnaires, clinical assessments and medical
treatment. Consent to access the REP database for
information related to AD/HD was obtained in accor-
dance with institutional policy and Minnesota law.
In addition, access to the complete school records
from all Rochester public and private schools was
obtained through a contractual research agreement. The
school records are maintained permanently and include
the results of individual assessments for any behavioral
or learning problem, medication reports, results of
group-administered achievement tests, special educa-
tion plans and goals, and notations about school
problems made by school staff, parents and others.
Finally, individual consent was obtained to review
the records of the relatively few birth cohort subjects
who received care at the only private community
psychiatric practice, whose records were not included
in the REP.
Taken together, the information included in the
medical and school records of birth cohort subjects
included detailed descriptions of symptoms, clinical
diagnoses, psychometric test results, questionnaire
results and treatment history for AD/HD. This informa-
tion is unique in its detail, completeness, utilization of
multiple sources (school and medical records) and
availability for all the members of the population-based
birth cohort under study.
The protocol was approved by the Mayo Clinic
institutional review board.
ACTA PÆDIATR SUPPL 445 (2004)
Identification of attention-deficit/hyperactivity disorder
incident cases
First, the complete school record was reviewed for each
of the 5718 subjects, recording any indications of
concern about school performance and/or learning.
For each of the 1951 subjects whose school records
included some notation of concern, four types of
information about AD/HD were then abstracted from
the medical and school records: (i) clinical diagnoses of
AD/HD; (ii) AD/HD symptoms consistent with DSM-
IV criteria; (iii) the results of AD/HD-related ques-
tionnaires and psychometric tests; and (iv) documenta-
tion of treatment with medications that are known to be
used in treating AD/HD. It was found that 1171 subjects
had at least one of these four types of information in
their medical or school records. The computerized
clinical diagnosis database from the REP was then used
to identify possible AD/HD cases from the remaining
group of 3767 subjects, whose school records did not
indicate any concern about school problems. A search
was conducted for all explicit diagnoses of AD/HD,
using both contemporary (e.g. attention-deficit/hyper-
activity disorder, combined type) and historic (e.g.
hyperkinetic syndrome) terms, as well as non-specific
diagnoses that may be related to AD/HD (e.g. hyper-
active behavior). The records of subjects who had
received care at the private psychiatric group were also
reviewed. An additional 173 possible AD/HD cases
were found from these latter two steps, for a total of
1344 possible cases of AD/HD in the birth cohort.
The information collected for these 1344 subjects
was used to construct explicit research criteria for AD/
HD, attempting to develop criteria consistent with the
DSM-IV and with current practice guidelines and
recommendations (6). Using these research criteria,
subjects were placed into four categories: (i) definite
AD/HD (subjects had both a clinical diagnosis of AD/
HD and supporting documentation, either positive
parent and/or teacher AD/HD rating scales, or fulfilled
DSM-IV criteria based on symptoms documented in the
medical and school records); (ii) probable AD/HD
(subjects had either a clinical diagnosis of AD/HD
without any supporting documentation or no clinical
diagnosis, but both forms of supporting documenta-
tion); (iii) questionable AD/HD (subjects had no clinical
diagnosis, but had one type of supporting documenta-
tion); and (iv) not AD/HD (subjects had neither a
clinical diagnosis nor any form of supporting docu-
mentation).
Statistical analyses
Since these AD/HD cases represented the entire
population of AD/HD cases in the birth cohort and
since the authors had access to comprehensive informa-
tion about AD/HD case status from the age of 5 y until
the subject died or moved from Rochester, the method
of Kaplan and Meier was used to estimate the
ACTA PÆDIATR SUPPL 445 (2004)
cumulative incidence of AD/HD between the ages of 5
and 19 y (7). Use of this statistical tool represents
another unique aspect of this study, giving considera-
tion to the various factors that may influence the timing
of AD/HD diagnosis throughout childhood and thus
reflecting variations in diagnostic approaches “as they
occur in the real world of clinical practice” (2).
Results
Cumulative incidence of attention-deficit/hyperactivity
disorder
In the original report, the cumulative incidence of AD/
HD was presented in several ways. First, the combined
cumulative incidence of 16% [95% confidence interval
(95% CI) 14.7–17.3] was reported for the three
research-defined categories (definite plus probable plus
questionable AD/HD). This value represents the highest
estimate of the occurrence of AD/HD in the birth
cohort, and includes subjects who fulfilled the least
stringent criteria (questionable AD/HD) as well as cases
more stringently defined (definite and probable
AD/HD). The intermediate estimate of cumulative
incidence was 9.4% (95% CI 8.3–10.4), including only
those subjects who fulfilled criteria for definite plus
probable AD/HD. The most conservative and, in the
authors’ opinion, probably the most accurate estimate of
the cumulative incidence of AD/HD was 7.5% (95% CI
6.5–8.4), including only those subjects who fulfilled the
most stringent research criteria for definite AD/HD.
Males were far more likely to be identified as AD/HD
incident cases than females, consistent with findings
from previous studies (male vs female relative risk 3.0
for the group of definite plus probable AD/HD, 95% CI
2.3–3.8).
Medical treatment for attention-deficit/hyperactivity
disorder
The prevalence of psychopharmacological treatment
varied across the four research-identified AD/HD
groups (definite, probable, questionable and not
AD/HD). Stimulant medications, in particular, were
prescribed at some point for 86.5% of the subjects with
definite AD/HD, 40.0% of the subjects with probable
AD/HD, 6.6% of those with questionable AD/HD and
only 0.2% of subjects who were not AD/HD.
Discussion
How common is attention-deficit/hyperactivity
disorder? Has the controversy been resolved?
AD/HD is a disruptive behavior disorder, with the
diagnosis established on the basis of symptom docu-
mentation and clinical judgment about whether these
symptoms are severe enough, across settings, to warrant
the diagnosis. In the absence of a biological marker for
How common is AD/HD? 57
AD/HD, some would argue that it is simply not
possible to establish how many children are affected
by this condition (2). Although the current study may
not provide the final answer to this important
question, the authors believe that in this research
project they have used the most objective, comprehen-
sive types of information available, needed to establish
the presence or absence of AD/HD, and applied
research criteria to a population-based birth cohort,
yielding results that reflect the occurrence of AD/HD in
the community.
Previous studies of the occurrence of AD/HD have
typically relied on small, unrepresentative study
samples, such as children referred for assessment of
AD/HD, or single-checklist measures done, for exam-
ple, by teachers. In comparison, the current study, by
including all children born in the community during a
7 y period, avoids the problems of these prior studies.
To the authors’ knowledge, this research represents the
first report on the incidence of AD/HD in a population-
based birth cohort.
In addition to the population-based birth cohort, this
study includes unique, comprehensive sources and
types of information to establish AD/HD incident case
status. By definition, the diagnosis of AD/HD requires
the documentation of complex information from multi-
ple sources. The community of Rochester, Minnesota,
and the resources of the REP provide the ideal setting
for studies of AD/HD (as well as other developmental
and behavioral disorders) (8). Through the REP, the
authors had access to the complete medical records of
all members of the birth cohort. In addition, permission
was obtained to access the complete school records for
all subjects in the birth cohort, regardless of which
school the subjects attended. The medical and school
records include subjective reports of school problems
that allowed an assessment of whether the subject had
symptoms consistent with DSM-IV criteria for AD/HD,
a truly exceptional opportunity considering the size of
the population under study. The records also included
the results of all psychometric tests and questionnaires,
clinical assessments and diagnoses that are needed to
establish AD/HD case status.
The detailed information from medical and school
records for the entire birth cohort was used to develop
well-defined, rigorous, research criteria for AD/HD. To
describe and categorize fully the occurrence of AD/HD
in the birth cohort, three categories were included,
ranging from most stringent (definite AD/HD) through
intermediate (probable AD/HD) to least stringent
(questionable AD/HD). These criteria, in turn, allowed
the cumulative incidence of AD/HD to be estimated,
from a low of 7.5% (i.e. including only those cases of
definite AD/HD) to a high of 16% (definite plus
probable plus questionable AD/HD). These estimates,
applied to the study sample, help to explain the wide
range of prevalence rates reported in previous studies
that used various types of information to establish AD/
58 W Barbaresi et al.
HD case status. The research criteria for definite AD/
HD (requiring a clinical diagnosis, plus supporting
documentation: either evidence that the subject fulfilled
DSM-IV criteria or a positive result on a rating scale of
AD/HD symptoms) approximate the criteria for AD/HD
diagnosis outlined in current practice guidelines (6). As
such, the authors believe that these subjects represent
the patients who most clinicians would agree represent
true cases of AD/HD.
In summary, the large population-based birth cohort,
comprehensive sources and types of information and
well-defined research criteria, have allowed the re-
searchers to provide what they believe to be the most
accurate estimate of the occurrence of AD/HD currently
available.
Are clinicians treating the right number of children for
attention-deficit/hyperactivity disorder and are they
treating the right children?
Many people in the USA are justifiably concerned about
whether children are being inappropriately treated with
psychostimulant medication. Furthermore, recent
studies have raised particular concerns about the use
of multiple medications for treatment of AD/HD in
children who, most experts would agree, are too young
for a diagnosis of AD/HD to be established confidently
(9). In the present study, it is reassuring to be able to
report that the majority, although not all, of the children
with AD/HD received treatment with medications
known to be effective for this condition. It is equally
reassuring to be able to report that less than 1% of the
children in the birth cohort, who did not fulfill research
criteria for AD/HD, were treated with psycho-
stimulants. Thus, in this community, with excellent
access to high-quality healthcare, clinicians appeared
to make good decisions about the use of these
medications.
Future research: understanding the natural history and
treatment outcomes for attention-deficit/hyperactivity
disorder
Understanding about many other aspects of AD/HD,
including response to treatment, comorbidity, long-term
outcome and the impact of treatment on long-term
outcome, has been hindered by the absence of popula-
tion-based follow-up studies of these issues. In their
ongoing research, the authors will continue to study the
group of research-identified incident cases of AD/HD
from the 1976–1982 birth cohort to address these
important questions.
The literature includes numerous studies document-
ing the short-term benefit of treatment with psycho-
stimulants for AD/HD (10). The medical records of the
birth cohort subjects include detailed information about
medical treatment of AD/HD, including medication
doses, dates of treatment, description of clinical
response and documentation of the occurrence of side
ACTA PÆDIATR SUPPL 445 (2004)
effects. Although this information is clearly not com-
parable to the results of randomized clinical trials, the
availability of complete information about treatment of
AD/HD throughout childhood and adolescence offers
an unprecedented opportunity to assess the effective-
ness of medical treatment of AD/HD in the community.
Identification and management of comorbid condi-
tions have increasingly been recognized as key compo-
nents in the successful treatment of AD/HD (6).
Unfortunately, information about AD/HD comorbidi-
ties has most often been derived from clinic-referred
patients. It may be argued that such subjects are more
likely to have psychiatric, learning and behavioral
problems that complicate their care, leading primary
care clinicians to refer them to tertiary care centers. To
obtain the most accurate estimates of comorbidities of
AD/HD, it is essential to study non-referred, popula-
tion-based cohorts of children with and without AD/
HD. Again, the 375 subjects with AD/HD and subjects
not having this condition, all within the 1976–1982
Rochester birth cohort, provide the opportunity to
obtain this information. By reviewing information in
the medical and school records, subjects could be
identified with comorbid learning, behavior and psy-
chiatric comorbidities that developed during childhood
and into early adulthood.
Studies on the long-term psychosocial and academic
outcomes for children with AD/HD are lacking, or are
based on small, non-representative samples. The ab-
sence of substantive information about long-term out-
comes has clearcut implications for clinicians and also
for healthcare and educational policy makers. For
example, the medical and school records will allow
assessment of academic achievement, high school
graduation rates and substance abuse, among other
psychosocial outcomes. By improving the understand-
ing of long-term outcomes, intervention strategies can
be developed to address these outcomes and to provide
appropriate educational support and interventions.
Furthermore, comparisons of comorbidity and long-
term outcome across the three DSM-IV subtypes of AD/
HD, may contribute important empirical data to the
ongoing debate about whether or not these subtypes
should be considered as separate entities.
Numerous studies demonstrate that medical treat-
ment improves virtually all aspects of functioning for
children with AD/HD. However, one of the most vexing
aspects of AD/HD treatment is the absence of data that
demonstrate improvement in long-term outcome (10).
The observational nature of the present study data will
not allow outcomes to be attributed to specific
treatment. Nevertheless, this study population affords
a unique opportunity to explore associations between
treatment received throughout childhood and important
social and behavioral long-term outcomes. The cost and
complexity of obtaining this information from rando-
mized, controlled, long-term studies would be prohibi-
tive.
ACTA PÆDIATR SUPPL 445 (2004)
Conclusion
The initial results of this population-based study of
AD/HD provide what the authors believe to be the most
accurate estimate of the incidence of AD/HD to date.
The nature of the study population, the unique sources
of information about symptoms of AD/HD and the use
of well-defined research criteria allowed identification
of all incident cases of AD/HD in the 1987–1982
Rochester birth cohort. The history of medical treatment
for AD/HD among these subjects indicates that clini-
cians made appropriate decisions about the use of
stimulant medication, and that children who did not
have AD/HD were virtually never treated with stimu-
lants. Furthermore, the AD/HD incident cases from the
initial study offer an unprecedented opportunity to study
the comorbidities, long-term outcome and impact of
treatment on the long-term outcome of children affected
by AD/HD.
Acknowledgements.—This project was supported by research grants
from the Mayo Foundation (Rochester, MN) and HD29745 and
AR30582. Our ongoing studies are supported by a grant from McNeil
Consumer and Specialty Pharmaceuticals. The authors gratefully
acknowledge the contributions of D Siems, study coordinator; S
Daood, computer programmer; S Bass, data analyst; C Klein and
other members of the AD/HD team for data collection; and Inde-
pendent School District 535 for their cooperation and collaboration.
How common is AD/HD? 59
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