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RESEARCH UPDATE REVIEW

10-Year Research Update Review: The Epidemiology of


Child and Adolescent Psychiatric Disorders: I. Methods
and Public Health Burden
E. JANE COSTELLO, PH.D., HELEN EGGER, M.D., AND ADRIAN ANGOLD, M.R.C.PSYCH.

ABSTRACT
Objective: To review recent progress in child and adolescent psychiatric epidemiology in the area of prevalence and
burden. Method: The literature published in the past decade was reviewed under two headings: methods and findings.
Results: Methods for assessing the prevalence and community burden of child and adolescent psychiatric disorders have
improved dramatically in the past decade. There are now available a broad range of interviews that generate DSM and ICD
diagnoses with good reliability and validity. Clinicians and researchers can choose among interview styles (respondent
based, interviewer based, best estimate) and methods of data collection (paper and pencil, computer assisted, interviewer
or self-completion) that best meet their needs. Work is also in progress to develop brief screens to identify children in need
of more detailed assessment, for use by teachers, pediatricians, and other professionals. The median prevalence estimate
of functionally impairing child and adolescent psychiatric disorders is 12%, although the range of estimates is wide.
Disorders that often appear first in childhood or adolescence are among those ranked highest in the World Health
Organization’s estimates of the global burden of disease. Conclusions: There is mounting evidence that many, if not
most, lifetime psychiatric disorders will first appear in childhood or adolescence. Methods are now available to monitor
youths and to make early intervention feasible. J. Am. Acad. Child Adolesc. Psychiatry, 2005;44(10):972–986. Key Words:
epidemiology, services, methods.

The focus of these two 10-year reviews is, unlike most in diabetes. Here we discuss how epidemiology in the past
this series, not on a disorder or treatment but on an ap- decade has increased our understanding of psychiatric
proach to thinking about disease. Many years ago, Tony disorders of childhood and adolescence.
Earls (1979) defined epidemiology as ‘‘an exact and ba- Child and adolescent psychiatry came late to epide-
sic science of social medicine and public health.’’ Epi- miological research, and in one respect this is fortunate
demiology provides the scientific underpinnings for the because a tremendous amount of empirical, theoretical,
prevention and control of disease across the spectrum and statistical work has been done in other branches of
of medicine, from infectious diseases like acquired medicine and psychology, from which we have been
immunodeficiency syndrome to chronic conditions like able to benefit. In the past 30 years, and outstandingly
in the past decade, research in our area has caught up,
and even, as in the innovative use of longitudinal epi-
Accepted April 25, 2005.
All of the authors are with the Center for Developmental Epidemiology, Duke demiological samples to study gene–environment inter-
University Medical School, Durham, NC. actions (Caspi et al., 2002, 2003; Foley et al., 2004),
Work on this paper was supported in part by grants 06937, 01002, and moved to the forefront of epidemiological research.
01167 from the National Institute of Mental Health, grants 011301 and
016977 from the National Institute on Drug Abuse, and a Pfizer Faculty Scholar
First, we explain what an epidemiological approach
Award in Clinical Epidemiology to Dr. Egger. to child and adolescent psychiatry can offer, making
Correspondence to Dr. E. Jane Costello, Box 3454, Duke University Health clear Earls’s distinction between ‘‘public health epidemi-
Systems, Durham NC 27710; e-mail: elizabeth.costello@duke.edu. ology,’’ whose task is to monitor and reduce the burden
0890-8567/05/4410–0972Ó2005 by the American Academy of Child
and Adolescent Psychiatry. of disease on the community, and ‘‘scientific epidemi-
DOI: 10.1097/01.chi.0000172552.41596.6f ology,’’ which uses epidemiological methods to

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EP IDEMI OL OGY I: PUB LIC H EA LTH

understand the causes of mental illness (Earls, 1979). in using two methods of attack on disease: tactical meth-
Then, we review how far epidemiology has progressed ods, concerned with the practical and administrative
in its ‘‘public health’’ task of monitoring the burden of problems of disease control at the day-to-day level, and
child and adolescent psychiatric disorder in the past de- strategic methods, concerned with finding out what
cade. In Part II, we focus on epidemiology’s other task: causes disease so that new weapons of prevention and
to build a body of scientific information about what control can be engineered (Earls, 1980; Susser, 1973).
causes psychiatric disorders to occur when and where Thus, for example, in their tactical or public health role,
they do. We describe a major paradigm shift that epidemiologists can be found reporting on the preva-
has occurred in recent years: like child and adolescent lence of adolescent drug abuse and advising on how
psychiatry in general, epidemiology is beginning to in- to control its spread, whereas others working at the stra-
corporate developmental psychopathology into a new tegic level may be exploring the science underlying en-
approach with a new name: developmental epidemiology. vironmental constraints on gene expression.
Epidemiology diverges from clinical medicine to the
extent that it concentrates on understanding and con-
WHAT IS EPIDEMIOLOGY?
trolling disease processes in the context of the popula-
Epidemiology is the study of patterns of disease in tion at risk, whereas the primary focus of clinical medicine
human populations (Kleinbaum et al., 1982). Patterns is the individual patient. This does not mean that ep-
are nonrandom distributions, and patterns of disease idemiology is not concerned with the individual; on the
distribution occur in both time and space. Whenever contrary, it is very much concerned with understanding
we observe a nonrandom distribution, we have the op- the individual s illness and the causes of that illness. The
portunity to identify causal factors that influence who difference lies in the frame of reference. Put crudely,
gets a disease and who does not. For example, we ob- clinical medicine asks, ‘‘What is wrong with this person
serve that depression rises rapidly after puberty in girls, and how should I treat him or her?’’ Epidemiology asks,
but not to the same extent in boys (Angold and Worth- ‘‘What is wrong with this person and what is it about
man, 1993). This nonrandom distribution in time him or her that has resulted in this illness?’’ Why is this
suggests that there may be something about puberty child depressed, but not her brother? If her mother is
in girls that is causally related to depression (Angold also depressed, then is the child’s depression a cause,
et al., 1998a). An example of disease distribution in a consequence, or an unrelated, chance co-occurrence?
space can be seen in the Methods for the Epidemiology Such questions immediately set the individual child
of Child and Adolescent Mental Disorders (MECA) within a frame of reference of other children, or other
study of five sites in the United States and Puerto Rico family members, or other people of the same sex or race
(Shaffer et al., 1996). Although the prevalence of psy- or social class.
chiatric disorders was fairly similar across sites, the like- As the study of patterns of disease distribution in time
lihood that a psychiatric diagnosis was accompanied by and space, epidemiology encompasses a great deal more
significant functional impairment was much higher in than simply counting noses. ‘‘Epidemiology counts’’
children at the mainland sites than in Puerto Rico. This (Freedman, 1984), but it does far more than that. This
offers the opportunity to study between-site differences review of the past decade shows just how much more
that may result in differences in the level of impairment epidemiology has begun to do in one of its final fron-
caused by psychiatric disorders. The task of epidemiol- tiers: child and adolescent psychiatric disorder.
ogy is to understand these observed patterns in time and
space and to use this understanding as a basis for the
EPIDEMIOLOGICAL METHODS: ASSESSING CHILD
prevention and control of disease.
AND ADOLESCENT PSYCHIATRIC DISORDERS IN
Epidemiology has similarities to and differences from
NONCLINICAL SAMPLES
clinical medicine. Like clinical medicine, epidemiology
is an action-oriented discipline whose goal is interven- Counting cases is an important first step toward measuring the
tions to prevent and control disease. Scientific knowledge social burden caused by a disease and the effectiveness of prevention.
For most diseases, simply counting the number of individuals pre-
about the cause and course of disease is another com- senting for treatment will produce estimates that are seriously biased
mon goal. Epidemiology also reflects clinical medicine by referral practices, ability to pay, and other factors; a particular

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COSTELLO ET AL.

problem in child psychiatry because parents, teachers, and pediatri- severity of symptoms and are less likely to overidentify rare symp-
cians all serve as ‘‘gatekeepers’’ to treatment (Horwitz et al., 1998). toms, such as those of psychosis (Breslau, 1987).
Community surveys are needed to measure the extent of need and Are clinically qualified ‘‘best estimators’’ available to make a final
unmet need for prevention or treatment. judgment if the fixed questions leave the interviewer unsure of how
A major task facing child and adolescent psychiatric epidemiol- to code a symptom? If so, then it is feasible to use an interview such
ogists is to develop assessment measures that accurately identify as the Development and Well-Being Assessment (DAWBA; Good-
‘‘true’’ cases. In recent decades, this task has been understood as man et al., 2000), which combines highly structured questions with
one of translating the disease taxonomies in current use (in practice, additional material, if necessary.
the ICD [World Health Organization, 1978, 1987] and the DSM Do the Study Questions Require Categorical Diagnoses or Symp-
[American Psychiatric Association, 1980, 1987, 1994]) into ques- tom Scales or Both? All of the interviews described here generate
tionnaires, interviews, and other means for collecting the relevant diagnoses. Most also produce symptom scales created by adding
information from individuals and coding it into diagnostic categories. the number of positive symptoms. These can be useful provided that
A decade ago, child and adolescent psychiatric epidemiology was still the focus is on the symptoms that go into a formal diagnosis and not
struggling with the task of developing measures that accurately per- on any other related symptoms, or on the frequency, duration, or
formed this task for nonclinical samples, preferably for reasons of intensity of symptoms. If this kind of information is needed, how-
cost, measures that could be administered without long-term clinical ever, the choice is between instruments such as the CAPA, which
training. The process was made more challenging by the rapid re- incorporate these features, and interviews designed for clinicians,
visions of the taxonomies, which kept moving the target, and by such as the Schedule for Affective Disorders and Schizophrenia
a lack of clarity in many areas of the symptom criteria. Several kinds for School-Age Children (Ambrosini, 2000; Shanee et al., 1997).
of measures were needed, ranging in detail from those that mirrored
best-practice clinical diagnosis as closely as possible to shorter screen-
ing questionnaires for use in the many settings in which full diag- Extensions of Psychiatric Interviews
nostic assessments were not feasible. A great deal of progress has been made in expanding the range of
instruments and modalities available for making formal psychiatric
diagnoses. Here, we describe some of these developments.
Diagnostic Interviews
Assessing Psychiatric Disorders in Preschool Children. Just as the in
The decade since DSM-IV appeared has been marked by what the 1980s, child and adolescent psychiatrists discovered that it was
could be seen either as surrender in the face of an insoluble problem possible to generate reliable diagnostic information from structured
or as a more mature approach to assessment. It became clear that (1) interviews with school-age children, so in the past decade, they have
there is a limit to the degree of test-retest reliability achievable in discovered that structured interviews with parents of children 2 to 5
psychiatric interviews, caused to a considerable extent by problems years old yield reliable responses that map onto DSM-IV diagnostic
at the level of the taxonomy (what does ‘‘often loses temper’’ really categories.
mean?); (2) diagnostic instruments now available, whether for Major efforts have been made to create a clear taxonomy of early
parents, adolescents, or children older than 8 years, match the test- childhood disorders (Angold and Egger, 2004; Boris et al., 2004;
retest reliability of comparable instruments for adults (Angold and Luby et al., 2003; Scheeringa et al., 2003; Stafford et al., 2003).
Fisher, 1999; Shaffer et al., 1999); (3) different informants will dis- Several new instruments have been developed for this age group
agree not because the measuring instrument is faulty but because (Carter et al., 2003; Egger and Angold, 2004; Wakschlag et al.,
they really do see different aspects of a child (Kraemer et al., 2002). A young child version of the DISC is under development
2003); (4) there is no single best way to identify psychiatric disorders (see http://www.c-disc.com). Work is also going on at several sites
using face-to-face psychiatric interviews. All of the various types of to integrate these parent measures with reliable assessments of affect
diagnostic interview (e.g., respondent-based interviews, interviewer- and behavior that can be used directly with young children, such as
based interviews, best-estimate diagnostic interviews) have shown the MacArthur Story-Stem Battery (Emde et al., 2003) and the
similar levels of test-retest reliability and validity (Angold and Fisher, Berkeley Puppet Interview (Ablow and Measelle, 1993; Measelle
1999). Statistical methods are being developed for optimally com- et al., 1998).
bining data from multiple informants (Kraemer et al., 2003) and Assessing Psychiatric Disorders in Young Adults. When participants
across studies (Festa et al., 2000). in a longitudinal study are interviewed with a measure designed for
A result of these developments is that the National Institute of children one year and one designed for adults the next, year-to-year
Mental Health (NIMH) has ended its period of special support differences may reflect changes in method as much as developmental
for the development of a single psychiatric interview (the Diagnostic changes. Two diagnostic interviews for children and adolescents
Interview Schedule for Children (DISC; Shaffer et al., 2000). Re- have developed instruments relevant to adolescents moving out
searchers should decide which diagnostic interview to use based on of the home and into independent lives. The DISC has a young
the core questions that they want to answer in their study and the adult version in preparation (see http://www.c-disc.com) and the
resources available; for example, will the interviewers come from CAPA has a version available for adolescents living away from home
a survey research company or will they be trained and supervised and for young adults (the Young Adult Psychiatric Assessment
by the research team? [Angold et al., 1999]). Both are designed to be used with the par-
The former tend to be good at conducting respondent-based in- ticipant alone, without supporting information from a parent, as is
terviews such as the DISC, in which each question is fixed. When customary with younger individuals.
more intensive training and supervision of interviewers are possible, Alternative Methods of Data Collection. The standard method of
it has been shown that lay interviewers using a structured interview data collection until recently has been, as in the clinical field, the
such as the Child and Adolescent Psychiatric Assessment (CAPA; face-to-face interview with the child and/or parent. The interviewer
Angold and Costello, 2000) are capable of making what would once usually asked questions from a printed schedule and recorded re-
have been called ‘‘clinical judgments’’ about the presence and sponses the same way; the latter were then entered into computer

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EP IDEMI OL OGY I: PUB LIC H EA LTH

files and coded using specially written algorithms that followed the studies,’’ discussed later in this section. They may be completed by
logic of the diagnostic taxonomy (DSM or ICD). Many alternatives parent, teacher, or child or some combination of these. When chil-
are being developed and tested. First, most interviews have or are dren themselves have completed such questionnaires in school set-
developing computerized versions of the standard interview. These tings, these have tended to be anonymous surveys (e.g., Alcohol and
may simply transfer the paper-and-pencil interview to a laptop com- Drug Defense Program, 1991; Johnston et al., 1996; Stevens et al.,
puter, so that the interviewer reads the same questions from the 1995; Swanson et al., 1992).
screen as he or she would from the paper schedule and keys in Screening or ‘‘indicator’’ measures may be used in several ways in
the responses. The advantage here is that the data are entered directly studies of representative population samples. They may be used as
into a database, cutting out an expensive and error-prone phase in a substitute for, or approximation of, psychiatric interviews, in stud-
data collection. These programs may also prevent the interviewer ies short on time or trained staff. If the sensitivity (proportion of true
from entering out-of-range information and guide him or her cases identified) and specificity (proportion of true noncases iden-
through sets of branching questions. Examples of computerized in- tified) of the screen in relationship to an accepted criterion, such as
terviews are the DISC, a version of the Diagnostic Interview for a psychiatric interview, are acceptable, then it can be used to estimate
Children and Adolescents (Reich, 2000), and the Preschool Age Psy- population prevalence rates. Screens are used in this way, for exam-
chiatric Assessment (Egger and Angold, 2004). ple, in the National Longitudinal Survey of Children and Youth
A second development has been to provide the child or parent with (Bennett and Offord, 2001) and the Dutch national survey (Ver-
direct access to the computerized interview, cutting out the inter- hulst et al., 1997). Work to develop a screen for use in conjunction
viewer. The respondent may read the questions on the screen or listen with the National Health Interview Survey in the United States is in
to them through earphones, or both. Examples of this approach are progress (Bourdon et al., 2005). They may be used as the first stage
the ‘‘voice DISC’’ (see http://www.c-disc.com), and the audio-CASI in a multistage protocol designed to increase the number of likely
(computer-assisted self-completed interviewing) sections of the CA- ‘‘cases’’ for more detailed assessment at a later stage, e.g., Isle of
PA (see http://devepi.mc.duke.edu). There is evidence that respond- Wight study (Rutter et al., 1970), the Great Smoky Mountains
ents will report more information, particularly about sensitive topics Study (Costello et al., 1996b), Caring for Children in the Commu-
such as abuse and drug use, than they will face to face with an inter- nity (Angold et al., 2002), the Pittsburgh Youth Study (Loeber et al.,
viewer (Des Jarles et al., 1999; Metzger et al., 2000; Taylor et al., 1999). 2001). They may be used for follow-up of subjects in longitudinal
Third, investigators have been working on adding visual cues to protocols where frequent contact is required (Farmer et al., 1999)
the verbal forms of questioning in the hope that this will improve the and where change in symptom levels may be more important than
validity of psychiatric interviewing with younger children or those change in diagnostic status.
with lower levels of cognitive development. Picture interviews based Screening instruments make two sorts of errors: they identify
on earlier versions of the DISC have been developed by a group in children as cases when they are not (false positives) and they miss
Quebec (Valla et al., 1994, 1997, 2000). There are various versions, true cases (false negatives). Nevertheless, when a screening instru-
using both African American and white boys and girls in the pic- ment has good test-retest reliability and validity relative to the cri-
tures. Reliability appears to be comparable to that of the verbal terion measure, it can do three useful things:
version.
Other Languages. Most of the major assessment instruments have 1. It can provide a useful approximation of population prevalence,
now been translated into Spanish. The DAWBA, which was used for even when it makes errors, provided that the false-positive and
the recent national survey of British children, has online versions in false-negative errors are reasonably balanced.
English, Norwegian, Portuguese, and Spanish (http://www.dawba.- 2. Screens tend to be inexpensive and intensive interviews expen-
com/b0.html), and the DISC is available in at least 10 languages sive. It is sometimes possible to screen a large sample and ran-
(Web site under construction), whereas the CAPA and Preschool domly select a certain proportion with different screen scores
Age Psychiatric Assessment also exist in several languages, including for detailed assessment. With the right sampling design, this
Spanish and French. International comparisons are becoming a real can help to reduce sample size (and cost) without too great an
possibility. increase in variance; indeed, if correctly used it can reduce var-
iance and increase power (Erkanli et al., 1997, 1998, 1999).
3. A screening questionnaire can reduce subject burden, which
Screening for Psychiatric Disorder is particularly important in nonclinical and longitudinal studies.
Brief lists of questions or questionnaires completed by the child,
teacher, parent, and/or clinician are widely used to assess psychopa- In short, screens can be useful epidemiological tools, if carefully
thology, much more so than are full psychiatric interviews. Screen- used.
ing instruments are often used in schools, primary care pediatric Screens as Tools for Identifying High-Risk Children. Physicians, so-
offices, and with high-risk groups such as children in juvenile justice cial workers, teachers, and other professionals working with a broad
settings, as well as in national surveys. Thus, it is important to review range of children are anxious for epidemiologists to use their exper-
progress in this field. tise in instrument development to produce ‘‘indicators’’ for service
Screens have two main types of use: to estimate prevalence rates of use (Kohler and Rigby, 2003). The idea is that primary care profes-
a given problem at the level of the population and to identify in- sionals and others can use a brief measure to identify children who
dividual children as being at high risk of a disorder so that they should be offered treatment or referred for specialist evaluation.
can be selected for further evaluation, clinical services, or preventive Screens are often used by nonpsychiatric professionals who have a re-
interventions. Evidence from the past decade has shown that there sponsibility, whether legal (mandatory) or professional (ethical), to
are important differences in the utility of brief screens, depending on identify children who they believe could be helped by psychiatric or
the purpose for which they are used. social work treatment. Front-line professionals are uniquely well
Screens as Epidemiological Tools. Brief screening measures are placed to serve as gatekeepers to specialty care (Gardner et al.,
widely used as components of nationally representative ‘‘surveillance 2004; Sayal and Taylor, 2004). They deserve all of the help that

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COSTELLO ET AL.

we can give them. Surprisingly little work has been done recently to serious doubts on our ability at present to use brief screens to identify
examine the validity of the measures that they most often use to individual children at risk, however useful they may be at the level of
identify high-risk children or the decisions that they may base on population estimates. This is a critical area of work for epidemiology
them (Armbruster and Kazdin, 1994; Cassidy and Jellinek, 1998; in the next decade.
Farrington et al., 1996; Horwitz et al., 1998; Stancin and Palermo,
1997) or to develop new, more sensitive instruments for them.
Different traditions of screening have grown up in school and pri- SURVEILLANCE FOR CHILD AND ADOLESCENT
mary care clinics. Screens in schools tend to use a teacher as informant PSYCHIATRIC DISORDERS: ESTIMATING THE
(e.g., Teacher’s Report Form [Achenbach, 1991], Rutter B Scale
BURDEN OF DISEASE
[McGee et al., 1985], Conners Teacher Rating Scale [Conners
et al., 1998], or to use child self-report, as for example in screening
for suicidality [Shaffer et al., 2004]). On the whole, teachers have done
In the past decade, progress has been made not only
better at identifying children with behavioral problems than children in epidemiological methods but also in using them to
with emotional problems (Kolko and Kazdin, 1993; Verhulst et al., assess the prevalence of child psychiatric disorder. In
1994). The evidence that suicide screens are adequate for case iden- a world of scarce healthcare resources, it is important
tification is not encouraging (Patton et al., 1997; Pfeffer et al., 2000;
Shaffer et al., 2004). For example, using the Columbia Suicide Screen, to understand the size of the burden to the community
of 100 youths identified as high risk on this screen, only 7 met the caused by these disorders. Burden, in terms of numbers
DISC criterion of suicidal ideation or attempt, plus depression or dys- affected, have an impact on the individual, and cost to
thymia or substance abuse/dependence (Shaffer et al., 2004).
Primary care research, in contrast, has tended to employ parents the community is a crucial factor in the battle for resour-
as informants (Campo et al., 1999; Horwitz et al., 1992; Jellinek ces for treatment and prevention. One of the most im-
et al., 1999; Lavigne et al., 1993; Merritt et al., 1995;Riekert portant developments in epidemiology in the past
et al., 1999; Simonian et al., 1991). Some pediatricians are begin- decade is not specific to child and adolescent psychiatry
ning to experiment with adolescent screens for drug or alcohol
abuse, and, less frequently, depression (Ellen et al., 1998; Middle- but extends to the way the burden of illness in general is
man et al., 1995; Schwartz and Wirtz, 1990). perceived and measured. In 1996, the World Health
The usefulness of available brief questionnaires as ‘‘indicators’’ of Organization (WHO), together with the World Bank
service need is under review in an NIMH-funded study (A. Erkanli,
personal communication). An NIH work group is exploring the fea- and the Harvard School of Public Health, published
sibility of using analyses of existing data sets to develop a brief set of the first volume of The Global Burden of Disease
‘‘indicators’’ of need for mental health referral, for use by parents, (Murray and Lopez, 1996), whose subtitle is A Compre-
teachers, or primary care providers (Jensen, personal communication).
The demands on screening measures used to identify individuals
hensive Assessment of Mortality and Disability From Dis-
are much higher than the demands on those used for prevalence eases, Injuries, and Risk Factors in 1990 and Projected to
studies. They must accurately indicate that this particular child is 2020. Until this publication, diseases tended to be
at high risk. False positives and false negatives do not cancel out ranked in public health importance in terms of their im-
in this case but do compound the inaccuracy of the screen.
Evidence about the value of available screens for identifying high- pact on mortality rates. The WHO project has under-
risk individuals is depressing. As would be expected when the task is taken the task of weighing the impact of diseases in
to identify uncommon disorders in the general population, most terms of nonfatal as well as fatal health outcomes. The
measures show good ability to select out noncases (i.e., good pre-
dictive value negative), but they identify far too many children as unit of measurement adopted is disability-adjusted life-
potential cases who do not meet full diagnostic criteria at interview years (DALYs), which measure the number of expect-
(poor predictive value positive). They also miss a substantial propor- able years of life lost (to death) or lived with disability.
tion of those with the disorder (poor sensitivity), even when they are
good at identifying those who do not have the disorder (good spec-
Using this unit of measurement has revealed a drasti-
ificity). However, even good specificity can be dangerous if it is not cally different picture of the global burden of disease
good enough. If a disorder is rare, then most of the cases identified from that seen when only mortality is counted. Above
by even a pretty good screen will be false positives. There are finan- all, it has demonstrated the public health burden of psy-
cial, emotional, ethical, and possibly legal costs to both false positives
and false negatives. chiatric disorders. For example, Table 1 shows the 10
An example of the pitfalls of screens as indicators at the individual leading causes of DALYs in developed regions of the
level is presented by Patton et al. (1999), who screened adolescents world, for the age range 15–44 (data for children older
for depression using modules of a self-completion computerized ver-
sion of the Clinical Interview Schedule, a structured psychiatric in-
than age 4 years are not available separately). Unipolar
terview (Monck et al., 1994). The criterion measure was the widely major depression has the highest number of DALYs as-
used Composite International Diagnostic Interview (Wittchen sociated with it, and all but one (osteoarthritis) of the 10
et al., 1991). Even using a highly detailed screen, only 49% of those leading causes of DALYs is either a psychiatric disorder
identified were true cases, whereas the screen missed 82% of the
adolescents with diagnosed with depression by the Composite In- (schizophrenia, bipolar disorder, obsessive-compulsive dis-
ternational Diagnostic Interview. This level of accuracy throws orders) or strongly associated with psychiatric disorder

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EP IDEMI OL OGY I: PUB LIC H EA LTH

TABLE 1
Ten Leading Causes of DALYs at 15–44 Years Old, Developed Regions, 1990
Both Sexes Males Females
Disease or DALYs Cumulative Disease or DALYs Cumulative Disease or DALYs Cumulative
Rank Injury (thousands) % Injury (thousands) % Injury (thousands) %
All causes 61,707 All causes 36,943 All causes 24,764
1 Unipolar major 7,574 12.3 Alcohol use 4,677 12.7 Unipolar major 4,910 19.8
depression depression
2 Alcohol use 5,477 21.2 Road traffic 4,167 23.9 Schizophrenia 1,450 25.7
accidents
3 Road traffic 5,304 29.7 Unipolar major 2,664 31.1 Road traffic 1,137 30.3
accidents depression accidents
4 Schizophrenia 3,028 34.7 Self-inflicted 2,072 36.8 Bipolar disorder 1,106 34.7
injuries
5 Self-inflicted 2,641 38.9 Schizophrenia 1,578 41.0 OCDs 933 38.5
injuries
6 Bipolar disorder 2,241 42.6 Drug use 1,404 44.8 Alcohol use 801 41.7
7 Drug use 1,829 45.5 Violence 1,196 48.1 Osteoarthritis 783 44.9
8 OCDs 1,652 48.2 Ischemia heart 1,160 51.2 Chlamydia 599 47.3
disease
9 Osteoarthritis 1,634 50.9 Bipolar disorder 1,135 54.3 Self-inflicted injuries 569 49.6
10 Violence 1,507 53.3 HIV 911 56.7 Rheumatoid arthritis 549 51.8

in the epidemiological literature (alcohol use, road traf- Public Health Surveillance of Child and Adolescent
fic accidents, self-inflicted injuries, drug use, violence). Psychiatric Disorder
Together the nine psychiatry-related conditions cause For most medical conditions, it is the public health
more than 50% of all DALYs. Thus, policymakers agencies, chiefly the Centers for Disease Control and
are being forced to pay serious attention to psychiatric Prevention (CDC), who keep tabs on the impact of dis-
disorders as leading causes of suffering, lost opportu- eases on the public health. CDC is the surveillance arm
nity, and economic cost to their communities. of medicine, producing regular reports on morbidity,
As we discuss in Part II, there is ever-increasing ev- mortality, and, in some cases, risk factors. In the past
idence that many psychiatric disorders are already pres- 10 years, and especially after the publication of the
ent, or nascent, in childhood and adolescence. Attempts
Global Burden of Disease, the CDC has paid a great deal
to reduce the burden of mental illness must out of ne-
more attention to child and adolescent mental disorder.
cessity pay attention to the early years. It is also clear
Since 1991, the CDC’s Youth Risk Behavior Surveil-
from the population-based studies reviewed later in this
lance System has surveyed suicidality, drug use, and
article that a large number of children and adolescents
risk-taking behaviors, using anonymous questionnaires
suffer from psychiatrically induced disability. This has
become a focus of much research in the past decade administered in schools. The data are useful for tracking
(Canino et al., 1999; Costello et al., 1996a; Ezpeleta rises and falls of these problems, at least as reported by
et al., 2000; Foley et al., 2003; Giaconia et al., 2001; youths attending school. On the whole, rates have been
Hodges and Gust, 1995; Pickles et al., 2001), especially fairly steady since 1991 (see http://www.cdc.gov/
since WHO published the International Classification HealthyYouth/yrbs/factsheets.htm). For example, rates
of Functioning (World Health Organization, 2001), of physical violence have decreased somewhat, and 12-
a radical revision of its 1980 International Classification month rates of attempted suicide have remained con-
of Impairments, Disabilities, and Handicaps (World stant at around 8%, whereas rates of contemplating
Health Organization, 1980). Work is progressing on or planning suicide have fallen. Reported cigarette
a screening questionnaire for children and adolescents use has fallen steadily, use of marijuana rose through
to accompany WHO’s brief Disability Assessment 1997 and has since fallen, whereas use of cocaine dou-
Schedule for adults (Janca et al., 1996). bled through 1999 and has since held steady. This kind

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COSTELLO ET AL.

of tracking is important for deciding whether a problem study (Ford et al., 2003; Meltzer et al., 2003b), and it
is becoming more or less of a public health burden and deserves attention as a first for child and adolescent
can also be used on occasion to check the effects of a pre- psychiatry.
ventive intervention. Other sources of information for The British survey was conducted by the Office for
tracking risk behaviors are CDC’s National Health In- National Statistics, with funding from the Department
terview Survey and the National Health and Nutrition of Education and other agencies. The primary purpose
Examination Survey, both of which are seeking ways to was to produce prevalence estimates of conduct, emo-
incorporate more information about psychiatric disor- tional, and hyperkinetic disorders as well as pervasive
ders into their surveillance of the national burden of dis- developmental disorders, eating disorders, and tic dis-
ease. The National Health Interview Survey is using orders, using both ICD-10 and DSM-IV criteria. The
a psychiatric screening questionnaire for children 4– second aim was ‘‘to determine the impact or burden
17 years old in its national household surveys of health of children’s mental health. Impact covers the conse-
and service use. The Strengths and Difficulties Ques- quences for the child; burden reflects the consequences
tionnaire (Goodman, 1999) is widely used in the United for others’’ (Meltzer et al., 1999). Third, the study mea-
Kingdom and many other countries. The full Strengths sured service use. A stratified random sampling plan for
and Difficulties Questionnaire was used in the National England, Scotland, and Wales produced a sample of
Health Interview Survey in 2001, 2003, and 2004, and 10,438 children ages 5–15 years. Parent and child were
CDC developed a brief (six-item) version for use in interviewed using the DAWBA (Goodman et al.,
2002 and in future years (Bourdon et al., 2005). Pre- 2000), a computer-assisted lay interview that uses
liminary results extrapolated from interviews of 9,878 a ‘‘best-estimate’’ approach to diagnosis. The first inter-
families in 2002 show that 5.5% of U.S. children 4– view wave, conducted in 1999, was followed by a mailed
17 years old were reported by a parent to have definite questionnaire 18 months later and a second interview
or severe difficulties with emotions, concentration, be- 3 years after the first.
havior, or being able to get along with other people. Nationally representative data on older adolescents can
Twice as many boys as girls (7.5% versus 3.5%) were also be extrapolated from the 479 15- to 17-year-olds in-
reported to have ‘‘mental health problems.’’ The per- cluded in the first U.S. National Comorbidity Survey
centage of children with mental health problems was (NCS; Kessler, 1994). Although publications from the
higher in families with incomes below the federal pov- NCS have not focused much on the adolescents (Kessler
erty level (11%). and Walters, 1998; Miller et al., 2000), the data set is
These estimates are much lower than those from de- publicly available for analysis of this subgroup, and
tailed psychiatric interview studies and need to be vali- the NCS replication study in progress will oversample
dated against full psychiatric assessments. Data should adolescents ages 13 and older. Other studies have carried
be available soon from studies around the world using out similar single-wave surveys of child and adolescent
both the Strengths and Difficulties Questionnaire and psychiatric disorders based on smaller geographic areas,
detailed psychiatric interviews, including the latest round and some updates from longitudinal epidemiological
of the National Comorbidity Study in the United States, studies have also been published in the past decade (re-
which includes a sample of some 3,000 adolescents (Ron viewed in Costello et al., 2004). Figure 1 presents a sum-
Kessler, personal communication), a study of 300 pre- mary of data from these studies.
school children (Egger and Angold, 2004), and a sample A few general conclusions can be drawn from the
of 1500 9–17 year olds recruited from a primary care data. First, between 3% and 18% of children have a psy-
pediatric setting (A. Erkanli, personal communication). chiatric disorder causing significant functional impair-
ment (the federal definition of serious emotional
disturbance [Federal Register, 1993]). The median es-
Other Surveys of Prevalence and Burden timate of serious emotional disturbance is 12%, more
There has never been a nationally representative sur- than twice that generated from the National Health In-
vey of the prevalence and burden of child and adolescent terview Survey screen. The implication for clinicians
psychiatric disorder in the United States. The United and policymakers is that at any time one child in eight
Kingdom has recently carried out a national prevalence has an impairing psychiatric disorder.

978 J. AM . ACAD. CHILD ADOLESC. PSYCHIATRY , 44:10, OCTOB ER 2005


EP IDEMI OL OGY I: PUB LIC H EA LTH

Fig. 1 Summary of results of prevalence studies since 1993: highest, lowest, and median estimates for ages 5–17.

Research in the past decade has made it clear that Additional studies in the past decade have only served
prevalence rates are highly dependent on the extent to confirm this (Briggs-Gowan et al., 2000; Burns et al.,
to which the algorithms used to make the diagnosis 1995; Horwitz et al., 1998; Leaf et al., 1996; Sawyer
include or ignore functional impairment. The DSM-IV et al., 2001; Wu et al., 1999). They have, however,
itself is somewhat inconsistent on this topic: Some symp- added depth to our understanding of who receives serv-
toms and diagnoses require impaired functioning to be ices and why.
present, and others do not. It is clear from two papers that Evidence has accumulated for child mental health
present prevalence estimates with and without impair- care disparities associated with age (Olfson et al.,
ment (Canino et al., 2004; Shaffer et al., 1996) that rates 1998), income (Witt et al., 2003), insurance status
can be dramatically affected by this; for example, in the (Briggs-Gowan et al., 2000), geographical location
Methods for the Epidemiology of Child and Adolescent (Sturm et al., 2003), and family characteristics (Angold
Mental Disorders study, the prevalence of DSM-III-R et al., 1998b). The NCS and the Ontario Health Survey
simple phobias varied 30-fold, from 0.7% to 21.6%, de- both showed that the likelihood of receiving treatment
pending on how impairment criteria were applied. during the year of onset of a depressive disorder was 14
to 15 times higher for adults 30–54 years old than it was
Use of Mental Health Services for children 0–12 years old (Olfson et al., 1998). A sim-
Serious emotional disturbance is the federal criterion ilar, though somewhat smaller, disparity in likelihood of
for who should receive services, including income sup- prompt treatment was seen for many other disorders.
port and mental health care. Another job of public Family income has a confused relationship with access
health epidemiology is to monitor the extent to which to care. The National Health Interview Survey Disabil-
those who need care are receiving it and to help with the ity Supplements showed family financial burden as
complex task of measuring the effectiveness of treatment a barrier to care (Witt et al., 2003), but the survey study
and prevention programs in the ‘‘real world’’ outside the of Horwitz et al. of public assistance in Connecticut
research laboratory. showed no association with use of mental health care
Since the first studies of mental health service use in for children (Briggs-Gowan et al., 2000). Whereas
the 1980s, it has been clear that most children who need health insurance would be expected to mediate access
care are not getting it (Costello et al., 1988; Dulcan to care, there is growing evidence that children with pri-
et al., 1990; Leaf et al., 1990; Horwitz et al., 1992). vate insurance are at a disadvantage as compared with

J. AM. ACAD. CH ILD ADO LESC. PSY CH IAT RY, 44:10, O CT OBER 2005 979
COSTELLO ET AL.

publicly insured children in obtaining access to needed age groups. We know enough from prevalence studies
care (Burns et al., 1997; Weller et al., 2003; Witt et al., to be able to say with some confidence that the propor-
2003). The gap between need and use is seen not only tion of children having a psychiatric disorder, with or
in the United States but also in countries with more without impairment, is remarkably similar to that esti-
comprehensive healthcare systems (John et al., 1995; mated for adults (Costello et al., 1998; Kessler et al.,
Meltzer et al., 2003a; Sawyer et al., 2001; Waddell 1994, 1996; U.S. Public Health Service, 1999). A recent
et al., 2002). Within the United States, geographical study of national spending for mental health and sub-
disparities in access to services have also been docu- stance abuse (MH/SA) treatment (Harwood et al.,
mented (Sturm et al., 2003), often outweighing the ef- 2003) shows the following distribution of expenditures:
fects of race/ethnicity or income. Thomas and Holzer 11% on those younger than age 18 and 89% on the rest
(1999) have pointed out that in the United States, the of the population. Another way to look at the picture is
distribution of child and adolescent psychiatrists is in- to estimate spending on MH/SA treatment as a propor-
versely proportional to that of children living in poverty. tion of all healthcare spending. Harwood and colleagues
An important consideration in children’s access to estimate that 9% of the healthcare spending on children
mental health care is their dependence on others, pri- and adolescents went to MH/SA treatment ($9.6 bil-
marily parents, to negotiate the system, make appoint- lion), compared with 11% of the healthcare spending
ments, physically transport them, and pay for treatment. on adults ($65.2 billion). It should be noted, however,
Characteristics of the family such as the perceived burden that these figures do not include counseling and psycho-
of the child’s problems (Angold et al., 1998b; Teagle, logical treatment provided through the educational sys-
2002) and family history of mental illness (Johnson tem, which provides mental health care to more children
et al., 2001) have been shown to have a major impact (although not necessarily more treatment sessions) than
on a child’s chance of receiving needed care in the spe- do medical or specialty mental health services (Burns
cialty mental health system. Only when school-based et al., 1995; Farmer et al., 1999; Wu et al., 1999).
services are available are children sometimes able to seek The fact remains that one ninth of the money devoted
help for themselves (Farmer et al., 1999, 2003). to MH/SA treatment in the United States is being de-
A worrisome finding from epidemiological studies of voted to the youngest one fourth of the population.
mental health service use is the race/ethnic disparities in There have been major changes during the past decade
access to needed care. A review of the literature (Elster in the conditions under which mental health services are
et al., 2003) found that in six of nine studies, African being provided and the settings in which they are pro-
American adolescents received fewer mental health serv- vided. The dramatic move from inpatient to outpatient
ices than did white youths, whereas the other three treatment of young people was already under way in the
showed no differences. In three of six studies, Hispanic late 1980s (Kiesler and Simpkins, 1991), whereas a move
youths received fewer mental health services, whereas to managed behavioral health is more recent, and an
the other three studies showed no differences. Two increase in pharmacologic treatments occurred in the
studies of rural youths in North Carolina found that 1990s for two of the most common disorders, attention-
African American youths were as likely as white youths deficit/hyperactivity disorder and depression. Probably as
to receive mental health services through schools, juve- a result of this, the extent to which mental health con-
nile justice, child welfare, or pediatric primary care pro- ditions are diagnosed and treated in pediatric primary
viders, but were only half as likely to receive care from care settings has risen dramatically: from 1.1 million
psychiatrists or psychologists in specialty mental health visits in the mid-1980s to 4.5 million visits in the late
settings (Angold et al., 2002). Another study compared 1990s (Glied and Cuellar, 2003).
white with Native American youths (Costello et al.,
1997). There was no overall difference in the likelihood
of receiving mental health care, but Native American Effectiveness of Interventions to Prevent and Treat
youths were more than twice as likely as white youths Child Psychiatric Disorder
to have used inpatient services at some time. It may be argued that the reason for the gap between
Another index of access to care is the distribution of need for and use of mental health services is the
spending on mental health treatment across different lack of effective MH/SA treatments for children and

980 J. AM . ACAD. CHILD ADOLESC. PSYCHIATRY , 44:10, OCTOB ER 2005


EP IDEMI OL OGY I: PUB LIC H EA LTH

adolescents. The topic of how effective child mental No effect of treatment on secondary psychosocial im-
health treatments are, how far they have improved in pairment or parental impact was identified, however.
the past decade, and how the perception that treatment Psychotropic Medication. Monitoring the use of men-
is appropriate and effective influences service use, is too tal health care also requires monitoring the use of psy-
unwieldy for this review (Kazdin, 1996). There is no chotropic medications, and this has been an area of
doubt, as recent surveys have shown (Burns et al., growing concern. A review of two Medicaid databases
1999), that treatments that work are available for a wide and a large health maintenance organization, published
range of child and adolescent disorders. The question in 2003 but referring to 1987–1996, found that the 1-
for epidemiology is whether interventions of known ef- year period prevalence of psychotropic medication use
fect are really having an impact at the community level. grew to 6% of youths younger than 20 years old, a two-
Since the 1980s, John Weisz’s meta-analytic reviews to almost a threefold increase over 10 years. Most of the
of the effectiveness of psychotherapy have shown that temporal change occurred between 1991 and 1996
even treatments that worked well in the controlled en- (Zito et al., 2003). Medication rates for children are ap-
vironment of a research clinic had minimal effects in the proaching those of adults. For example, the 1996 federal
real world (Weisz and Jensen, 1999). In the past decade, Medical Expenditure Panel Survey showed a 4.1% psy-
controlled trials in real-world settings, such as the Fort chotropic medication rate for 6–17 year olds and a
Bragg experiment (Bickman et al., 1995) have shown 5.0% rate for 18–44 year olds (Zuvekas and Taliaferro,
disappointing outcomes using traditional data analytic 2003), and Stein et al. (2001) found that in a population
methods (Salzer et al., 1999). with private insurance in 1998, there was a 4.3% psycho-
A major methodological problem with observational tropic medication rate for 1–17 year olds as compared
studies of real-world treatment settings is that children with 4.7% for adults. There is no evidence that the use
who receive needed care may be different in many ways of psychotropic medications for children and adoles-
from those who do not receive treatment. The usual cents is falling since these papers were published.
method for dealing with this problem—random alloca- Recent research has begun to document a worrisome
tion to treatment and control status—is often impossi- aspect of the treatment of psychiatric disorders in chil-
ble in the real world. Two recent studies have found dren and adolescents—its lack of consistency with treat-
ways to overcome the problem to some extent. Foster ment guidelines. Olfson (2003) used the Medical
(2003) reanalyzed the Fort Bragg data using propensity Expenditure Panel Survey data to show that whereas
score modeling (Rosenbaum and Rubin, 1983), many children with depression (especially uninsured
a method that matches cases and controls using a com- and African American youths) did not receive treat-
posite score of potential confounders of the treatment- ment, ‘‘antidepressant medications were used far more
outcome relationship. Foster found a dose-response re- commonly than would be expected on the basis of pub-
lationship between number of treatment sessions and lished treatment recommendations.’’ In a study of the
children’s level of functioning, but no dose-response ef- use of stimulant medication in the general population,
fect on symptoms (measured using the Child Behavior Angold et al. (2000b) found that ‘‘stimulant treatment
Checklist). Taking a different approach, Angold et al. was being used in ways substantially inconsistent with
(2000a) suggested that treated and untreated children current diagnostic guidelines.’’ Whereas three fourths of
with psychiatric symptoms may differ in the trajectory children with attention-deficit/hyperactivity disorder
of their symptoms before entering treatment. They received stimulants, the majority of children receiving
found that treated individuals were more severely dis- stimulants was never, during a 3-year period, reported
turbed and showed deterioration in their clinical status, by parents to have any impairing attention-deficit/hy-
even before they received treatment, indicating that peractivity disorder symptoms.
comparisons with untreated individuals required con- There is no question that many psychiatric disorders
trols not only for pretreatment clinical status but also impose a huge social burden in terms of disability and
for pretreatment clinical trajectory. A significant dose- public and private expenditures (e.g., Cohen et al., 1994;
response relationship was found between the number Glied and Neufeld, 2001; Harwood et al., 1998; Kind
of specialty mental health treatment sessions received and Sorensen, 1993; Scott et al., 2001). There is also evi-
and improvement in symptomatology at follow-up. dence that improved treatment and/or case management

J. AM. ACAD. CH ILD ADO LESC. PSY CH IAT RY, 44:10, O CT OBER 2005 981
COSTELLO ET AL.

can reduce these costs (Dubowitz, 1990; Lave et al., functionally impairing psychiatric disorder receive
1998). For example, Foster et al. (2004) used data from treatment. Once upon a time, when effective treatments
two evaluation studies to show that better mental health for child and adolescent psychiatric disorders were rare,
services reduced the risk of involvement with the juve- this was regrettable but not a major public health issue.
nile justice system by around 30%. Furthermore, effects Now it is. The tragedy is compounded by powerful ev-
were more pronounced for the more serious offenses. idence that most psychiatric disorders have their origins
One of the tasks of epidemiology in the next decade will early in life: risk even for adult-onset disorders is often
be to monitor trends in treatment and prevention and increased by childhood adversities, and disorders man-
the impact on the prevalence and burden of child and ifesting themselves in the early years often recur in
adolescent mental illness. adulthood. So the public health directive to intervene
early is clear (Insel and Fenton, 2005), but the reality
is different. The youngest one fourth of the population
CONCLUSIONS: WHAT HAVE WE LEARNED IN THE
receives one ninth of the treatment dollars. A review of
PAST DECADE ABOUT THE BURDEN OF CHILD AND
NIMH research funding shows that research on chil-
ADOLESCENT PSYCHIATRIC DISORDERS?
dren is seriously underfunded. The role of primary
From the public health viewpoint, child and adoles- and secondary prevention in child and adolescent men-
cent psychiatric epidemiology in the past decade can be tal health has never been the focus of serious planning at
said to have come to terms with reality. It has stopped the federal level. The WHO has made it inescapably
agonizing over how many children have this or that dis- clear that psychiatric disorders with their origins in
order as if there were a ‘‘true’’ answer to the question. It childhood are a major contributor to the ‘‘global burden
is now clear that measures of psychopathology, whether of disease.’’ The task of the next decade is to develop
they take the form of interviews, questionnaires, or so- national and international policies to move research,
called objective tests, can be set to generate a wide range prevention, and treatment resources to where they are
of prevalence estimates, depending on the severity of the most needed. The task of child and adolescent psychi-
scoring criteria used. Also, they can only be as good as atric epidemiology, in its public health role, is to mon-
the taxonomy that they are designed to operationalize. itor that process.
Given the status of our taxonomies (currently DSM-IV
and ICD-10), the highly structured psychiatric inter- Disclosure: Dr. Egger holds a Pfizer Foundation Faculty Scholar Award
views developed by epidemiologists are the closest that in Clinical Epidemiology. The other authors have no financial relation-
we are going to get to a gold standard for diagnosis. As ships to disclose.
was established decades ago for adults, structured inter-
views are infinitely more reliable than clinical judgment
and have high validity vis-à-vis clinicians (Robins et al., REFERENCES
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