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| Attention-Deficit / Hyperactivity Disorder (ADHD) |
Agenda | Abstracts |
Speakers | Research |
Conclusions
 Abstracts
Individual, Social,
and Economic Burden of ADHD Through the Lifespan
Stephen P. Hinshaw, Ph.D., University of California,
Berkeley
Although the diagnostic category of
Attention-Deficit/Hyperactivity Disorder (ADHD) has received increasing
amounts of scientific inquiry and media scrutiny in recent years, there is
still considerable debate as to its impact on society and to the need for
national policy initiatives regarding the disorder. The burden associated
with ADHD may take place at the levels of (a) individuals who display
pertinent symptomatology, (b) family members and other caregivers, (c)
social and peer groups, (d) school systems (and public education in
general), (e) employers (and the job market in general), and (f) systems of
care (e.g., medical and mental health providers and insurers, juvenile
justice systems). The burden may be associated with both excesses of
behavior and their ramifications (e.g., costs of behavioral acting-out) and
deficits in skill acquisition and implications for ultimate productivity
(e.g., school failure, underemployment). Overall, there are few valid data
to estimate total societal costs (psychological, social, and economic) of
the disorder. This presentation, therefore, addresses the following issues:
Is ADHD a matter for serious public
health concern? Answering this question first involves inquiring as to
whether ADHD yields significant impairment in domains of functioning that
are salient for development and optimal functioning. A systematic review of
relevant literature reveals that, in childhood and adolescence, ADHD is
clearly associated with the following: (a) impaired school performance and
academic achievement (even when coexisting learning disabilities are taken
into account), (b) indicators of family disharmony and discord (most of
which appear to follow from and interact with, rather than precede, ADHD),
(c) marked difficulties with social relationships (i.e., ADHD is associated
with extremely high levels of peer rejection), (d) lowered self-esteem
(which predicts subsequent functioning), (e) risk for accidental injury, and
(f) deficits in performance of independent life skills and overall adaptive
functioning. Second, across development, ADHD is associated with increased
risk for antisocial behavior, substance abuse, early school termination,
underemployment, and continuing social problems. Methodologically, the
above-noted impairment and developmental risks apply to definitions of ADHD
that do not include functional impairment in the diagnostic
criteria--eliminating the potential for circular reasoning--and largely hold
with control of disorders that are often comorbid with ADHD. In this regard,
it is important to note that although associated aggression and antisocial
behavior may be the more potent predictors of delinquency and substance
abuse, (a) ADHD fuels an early onset of aggressive behavior and, (b)
ADHD-related symptomatology adds to the prediction of delinquent and
substance-abusing outcomes even when levels of aggression are controlled. In
all, there is strong evidence that ADHD must be considered a key public
health concern, but far more understanding of the mechanisms (genetic,
neuropsychological, relational) by which ADHD yields such clear impairment
and predicts such negative outcomes is needed.
Is the burden (individual, social, and
economic) related to ADHD understood at a population level? Quite
simply, the answer here is "no." The primary reason is that the United
States has few epidemiologic-scale data relevant to ADHD, making inference
to population-level impact nearly impossible to ascertain. The limitations
of clinical samples for making general population estimates are well known.
Calculation of such important indicators as the costs to school districts of
educating children with ADHD, the costs to families of coping with children
with marked behavioral dyscontrol, and the costs to society of ADHD-related
propensity for delinquent activity in adolescence--to name just
three--requires thorough, population-based screening, plus valid measures of
social and economic cost.
What public-health-related efforts are
needed? First, following from the above points, epidemiologic-scale data
are required. Survey methodology is well-suited to tracking ADHD-related
symptomatology--a needed supplement to ongoing clinical investigations.
Second, experts in psychopathology need to interact with experts in such
fields as health economics in order to calculate not only the immediate but
also the long-term financial impact of ADHD on such indicators as employment
status, need for ancillary services or public assistance, difficulties with
parenting when youth with ADHD themselves become adults, and ADHD-related
substance abuse and antisocial behavior. Third, whereas prevention is a
mainstay of public health, preventive efforts regarding ADHD are in their
infancy. These efforts might include targeting such known risk factors as
maternal smoking and substance abuse, low birth weight, and poor "match"
between parenting style and temperamental difficulties in young children.
Furthermore, far more needs to be done regarding the remolding of public
education to accommodate children with attentional and impulse-control
problems in order to avoid costly reliance on exclusionary special
educational approaches.
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Louis
C. Danielson, Ph.D, U.S. Department of Education
This presentation will focus on the
burden that ADHD poses for the educational system. In the early 1990s,
parents of children with ADHD began to advocate national educational
policies that would help ensure that their children would receive the
educational supports and accommodations that their children required.
Parents expressed their frustration with their inability to obtain supports
and services from schools. Since ADHD had not been listed specifically as a
one of the disability categories under the Individuals with Disabilities
Education Act (IDEA), school personnel would often refuse to develop
individualized education plans and to provide any specialized services for
these children. Among the results of efforts of these parents was a joint
policy interpretation from the Office for Special Programs (OSEP) and the
Office for Civil Rights (OCR) that clarified the responsibilities of
educational agencies under the IDEA and Section 504 of the Rehabilitation
Act. Briefly, this interpretation, issued in the form of a letter to the
Chief State School Officers, requires that schools meet the educational
needs of students with ADHD.
The impact of this policy interpretation
is difficult to assess precisely. We know that an increasing number of
states have developed specific requirements for schools related to the
education of children with ADHD. However, the national data collections on
the implementation of IDEA and Section 504 have not included questions on
the number of students with ADHD who are receiving specialized services or
accommodations. However, this session will provide estimates using data from
a number of small-scale studies and will discuss relevant trends in
large-scale databases.
Little is known at a population level
about the nature or intensity of educational interventions that are provided
to students with ADHD. Estimates of the burden to the educational system for
children with ADHD can be derived by examining the costs of services for
children with specific learning disabilities (LD), since the nature of
interventions received by children with ADHD in the schools is probably most
similar to LD students.
The rate of identification and treatment
of ADHD by health providers appears to so substantial that it justifies
treatment of ADHD as a public health concern. If we accept that many of
these students need accommodations for their disabilities in schools, then
there is also a substantial educational burden. However, only crude
estimates of the relative magnitude of this burden can be established at the
population level since the number of students, the nature of services, and
the cost per unit of service are not known. Large-scale population studies
are needed to assess each of these factors. A second set of studies is
needed to examine the long-term benefits of various educational
interventions for ADHD students that should also consider the medical and
mental health services that are provided. OSEP is currently designing a
nationally representative longitudinal study of a sample of students with
disabilities which will attempt to determine the number of students with
ADHD that receive special education. The study will also obtain information
from parents on other services provided to these children and will conduct
direct assessments of students to measure the outcomes of the interventions
that have been provided. The Office is also conducting a nationally
representative study to assess, per pupil, expenditures for special
education. This will provide data for students with ADHD. Together these
studies will substantially advance the knowledge concerning the educational
burden of and benefit to children with ADHD.
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Stephen V. Faraone, Ph.D., General Massachusetts Hospital
and Harvard Medical School
This presentation takes up three public
health questions about Attention-Deficit/Hyperactivity Disorder (ADHD):
1) Is ADHD a serious public health concern? 2) Has the individual and social
burden of ADHD been adequately estimated and understood at the population
level? and 3) What types of public health research could shed further light
on the burden posed by ADHD?
Because many diseases and disorders
compete for public health funding, we must consider the magnitude of the
public health problem posed by ADHD. Ideally, we would have a formal
definition of what does and does not constitute a serious disorder but,
lacking that, we can proceed with a model that views four components:
prevalence, impairment, treatment effectiveness and chronicity.
By any standard, ADHD has a high
prevalence among children: about three to ten percent in most studies of
DSM-III-R ADHD and somewhat higher for DSM-IV ADHD. The many impairments
associated with ADHD in childhood are well established. These include
psychiatric comorbidity, substance use, school failure, and social
disability. Treatment studies have demonstrated efficacy in acute studies of
children, but less is known about long-term effects. Although current
treatments may mitigate the course and outcome of the disorder, many treated
children retain a considerable amount of residual disability. Notably,
despite the availability of efficacious treatments, treatment delivery is
often sub-optimal.
Currently, there is much debate about the
degree to which ADHD is a chronic disorder. Some follow-up studies suggest
that the disorder essentially remits in adulthood. Others have documented
the persistence of impairing ADHD symptoms in many adults who were diagnosed
with ADHD in childhood. Clinical studies of ADHD adults show them to be
impaired in the same domains as ADHD children. Moreover, their ADHD leads to
occupational failure, legal difficulties, and traffic accidents.
There are many gaps in our knowledge
about the individual and social burdens of both treated and untreated ADHD.
Here are several of the many questions in need of answers: How does ADHD
affect the quality of life of ADHD children and their families? What
long-term losses in educational attainment, occupational achievement,
productivity and income can we attribute to ADHD? What impact does ADHD in
children have on the quality of life of their parents? Does ADHD in children
impact parental productivity and competitiveness in the workplace? What are
the costs of treating ADHD and associated features? What are the costs of
not treating ADHD and associated features?
Two priority areas of public health
research emerge from the considerations discussed above. First, because
there is much debate about the persistence of ADHD into adulthood, future
work needs to assess the validity of adult ADHD and the degree of
seriousness of adult ADHD from a public health perspective. This work also
needs to determine the best diagnostic criteria for identifying ADHD in
adults.
Second, because ADHD appears to be
under-identified and, therefore, under-treated in the community, the
resulting individual, family, and social costs should be estimated.
Moreover, we need to study the reasons for under-treatment and determine if
public health interventions and outreach can successfully help parents,
teachers, and primary care providers identify and treat clinically
significant cases of ADHD.
Date: September 20, 2005
Content source: National Center on Birth Defects and Developmental
Disabilities
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