Agenda | Abstracts |
Speakers | What is Public
Health? | Research |
Conclusions
Conclusions
In order to further define and develop
a public health research agenda for ADHD, a conference
delineating the multitude of public health concerns surrounding
the disorder and potential directions for needed research was held in Atlanta, Georgia,
September 23-24, 1999.
The conclusions from the conference are presented below.
Lesesne, C.,
Abramowitz, A., Perou, R., & Brann, E. Attention
deficit/hyperactivity disorder: A public health research agenda. [2000,
March 15]
Attention-Deficit/Hyperactivity
Disorder:
A Public
Health Research Agenda
Attention-Deficit/Hyperactivity
Disorder (ADHD) is a serious public health problem because of the large
estimated prevalence1 of the disorder; significant impairment in the areas
of school performance and socialization; the chronicity of the disorder;
the limited effectiveness of current interventions to attend to all the
impairments associated with ADHD; and the inability to demonstrate that
intervention provides substantial benefits for long-term outcomes.
However, because of the evolution of the case definition and differences
in how the case definition is operationalized, there is disagreement as to
prevalence and precise characteristics of children with the disorder.
Because of the lack of
a single, consistent, and standard research protocol for case
identification, variable and disparate findings have been noted in the
literature. Consequently, relatively little is known about the etiology of
ADHD, although genetic factors are believed to be important contributors.
The basic epidemiology of ADHD needs further research to include the basic
prevalence and identification of risk factors for ADHD.
The Division of Birth
Defects, Child Development, and Disability and Health (proposed) hosted a
conference September 23-24, 1999, entitled, "Attention Deficit
Hyperactivity Disorder: A Public Health Perspective". The meeting
gathered over 150 individuals from a variety of research, consumer,
academic, medical, and mental health disciplines to discuss the public
health issues related to this disorder and potential future research. The
conference presentations and material from the breakout sessions have been
used to help prepare a public health research agenda for ADHD. This
document delineates that plan.
Public health issues in
ADHD can be divided into three areas: the burden of ADHD in the
population, epidemiologic research issues in ADHD, and concerns related to
interventions for ADHD. These three topical areas were identified by CDC
as crucial for examining ADHD, and necessary to address public health
concerns and opportunities for action. The Division of Birth Defects,
Child Development, and Disability and Health (proposed) has used the
information and suggestions from the conference and highlighted the key
issues for each topic as well as the necessary actions to address these
public health needs. The formal topical areas are:
Social
and Economic Burden of ADHD through the Lifespan
Issues
Given the nature of the
disorder, ADHD is believed to have a noticeable impact on social,
economic, educational, and health care delivery systems. Additionally, it
is reasonable to assume the condition affects those socially associated
with an ADHD individual, including his/her family members, peers, and
co-workers. However, the magnitude of the social and economic burden in
these areas has not been systematically documented.
In general, small,
clinic-based studies have shown that adults with ADHD consistently exhibit
problems with interpersonal relationships, often have difficulty with
employment, and frequently have comorbid or secondary conditions that
further debilitate. Perhaps many of the disabilities and poorer outcomes
associated with ADHD actually are more strongly associated with conditions
that are highly comorbid with ADHD (such as Conduct Disorder) and result
in significantly higher economic consequences to society. However, this
hypothesis has not been tested.
In understanding the
full nature of the disorder, it is imperative to understand the effect it
has on the families of children with ADHD. These families may be more
prone to conflict and increased levels of familial stress. The child with
ADHD may also reduce the parents= productive participation in activities
outside the family (work and community life). Many parents of children
with ADHD themselves have the disorder or considerable levels of the
symptomatology. However, the impact this disorder has on the family unit
and in adult life needs considerable research effort to clarify what
aspects of family it impacts and in what ways.
In addition, there is
little concrete knowledge of the degree to which interventions can or do
improve the outcome of children with ADHD. Developing ways to improve
outcomes must begin with consistent and standardized measures of the
impact of the disorder. Such methodical surveying has not occurred.
Development of standardized burden measures is critical to beginning this
process.
Action to Address
Public Health Needs
-
Conduct analyses of
ADHD public health burden in a way that estimates a broad array of
costs outside of those exclusively associated with medical treatment.
The burden should be studied from a broad perspective to include
estimations of cost to society in a monetary sense as well as to
individual-level indicators of well-being such as family functioning
and social relationships.
-
Develop a
standardized way to measure burden associated with ADHD and promote
its use across studies. This would enable cross-study comparisons such
as meta-analysis to be undertaken. This standardized measure should
account for medical/treatment costs, educational costs, family costs,
and adult functioning variables.
-
Incorporate
information on ADHD in efforts to study and prevent unintentional
injuries, alcohol and drug abuse, sexual risk-taking, disability, and
other health risk behaviors in which ADHD may play an important role.
-
Include standardized
measurements of burden in all public health research of ADHD. Future
efforts to measure the impact of ADHD across a cohort should be a
priority. Understanding if current interventions or future prevention
strategies result in burden reduction will depend largely on
consistent and accurate estimation of these burdens.
-
Efforts must be made
to estimate the prevalence and cost of this disorder in adult
populations to understand the strict monetary costs as well as to
better understand the areas of impairment for adults with ADHD.
-
Conduct
population-based ADHD research that includes information on comorbid
conditions and the burden with which they are associated. Much of our
current evidence regarding comorbid conditions comes from clinical
studies rather than population-based studies.
-
Explore mechanisms
to append economic and social burden studies on other ongoing or
completed studies in order to quantify the burden of ADHD.
-
Foster
collaborations across Federal agencies in order to include information
on ADHD in data collection efforts.
-
Establish a resource
for both professionals and the public regarding what is known about
the impact of ADHD.
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Epidemiologic
Issues in ADHD
Issues
Although investigation
of ADHD has been quite extensive over the past 30 years, the scientific
process has been significantly slowed by the lack of a single, consistent,
and standard research protocol for case identification. Variable and
disparate findings have been noted throughout the literature even on basic
issues such as prevalence. As a consequence, speculation regarding
possible increases in ADHD prevalence cannot currently be evaluated.
Additionally, we do not
have demographic and descriptive statistics for children and adults with
the disorder; therefore, there are disparities in identification, access
to treatment, and reports of the manifestation of ADHD and its
comorbidities. Risk factors for ADHD have not been thoroughly investigated
although some clinical samples have identified possible factors that may
contribute to ADHD. Some of these related factors are prenatal alcohol
use, prenatal smoking, and low birth weight. Genetic predisposition or
family history of ADHD has been noted consistently among clinical samples
as a risk factor for the development of ADHD.
Unfortunately, many
fundamental etiologic questions remain for ADHD. Identifying and
understanding etiologic factors will enhance prevention efforts and
treatment for both children and adults with ADHD.
Action to Address
Public Health Needs
-
Develop standard
case identification protocols for use in research projects.
-
Conduct etiologic
studies of ADHD using population-based approaches to identify
important risk factors and opportunities for prevention activities and
research.
-
Use observational
epidemiologic methods to describe the impact of ADHD, its impact, and
its intervention patterns at the population level.
-
Utilize scientific
findings to develop, design, and implement ADHD prevention efforts
where possible.
-
Identify current
national or regional surveys where adding ADHD questions would provide
particularly useful information regarding the magnitude of the
disorder, the nature of common comorbidity and/or secondary
conditions, as well as data on health risk behaviors and long-term
outcomes for those with ADHD.
-
Establish a Federal
interagency workgroup to pool research expertise and resources in
order to launch epidemiologic research efforts that address the public
health research needs in ADHD. Such collaborations should be
multi-disciplinary and include professionals in epidemiology,
mental/physical health, risk behavior prevention, and health
communication for example.
-
Establish a resource
for both professionals and the public regarding what is known about
the epidemiology of ADHD.
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Interventions
for ADHD
Issues
ADHD is a chronic
condition of high prevalence that requires long-term intervention. Because
ADHD is an impairing condition and can have lifelong consequences,
interventions designed to reduce negative outcomes and increase capacities
should be carefully considered at the national level. One key public
health concern is the safety of pharmacological interventions. A second
key concern is the effectiveness of current interventions to reduce the
impairment associated with ADHD thereby improving health and functioning
for ADHD individuals over time. A third public health concern is access to
appropriate interventions for individuals and families affected by the
disorder.
There are several
public health concerns relative to pharmacotherapy. Pharmacologic
treatment is extremely prevalent. Assessing the health risks and benefits
to young children, particularly preschoolers, is a high priority. Children
who begin medication therapies very early and receive treatment on a
long-term basis may have unknown risks associated with current treatments.
Additionally, pharmacologic interventions often do not normalize behavior.
Research, albeit limited, suggests that even with long-term treatment,
children and adults with ADHD experience substantial problems in the
school, home, workplace, and community settings. This raises questions
about the effectiveness of pharmacologic interventions as a long-term
approach.
Another intervention
option to treat ADHD is behavior modification. It is clear that behavior
modification therapies, for youth in particular, have been tested and
shown beneficial for the treatment of behavioral disorders including ADHD.
However, the majority of youth receiving psychological interventions for
ADHD are probably receiving treatments that have not been shown to be
effective, such as individual therapy and/or play therapy. The
effectiveness of behavioral interventions must be further studied in the
treatment of ADHD, to better understand their potential to normalize the
behavior and functioning of those with the disorder, especially when
combined with pharmacotherapy.
Access to interventions
is a critical public health concern. ADHD affects a person=s ability to
learn and be socialized to his/her potential; therefore access to
diagnosis and intervention is a necessity. Common barriers to services
include lack of insurance coverage for mental health problems, exclusion
of behavior disorders, including ADHD, from mental health coverage, and
under-identification or mis-identification. Community practice with
respect to the diagnosis of ADHD fails to uniformly employ accepted
methods for establishing cross-situational symptomatology, measurement of
functional impairment, and diagnosis of comorbid conditions. Nationally,
we must begin to look at a wide variety of intervention issues surrounding
ADHD, including how current interventions impact individuals and systems
over time, as well as problems with access to appropriate services.
Action to Address
Public Health Needs
-
Disseminate
educational materials relating to the diagnosis of and intervention
opportunities for ADHD. Recipients should include but would not be
limited to primary care physicians, physician extenders (NP=s and
PA=s), mental health professionals, and educators.
-
Promote the
necessity of careful case identification using standardized
instruments and the employment of the most effective interventions in
common practice by disseminating useful information to professionals
and the public related evidence-based interventions for ADHD.
-
Conduct
population-based studies of ADHD intervention practices to examine
such variables as age of initiation of treatment, type(s) of
treatment, duration of treatment, and barriers to receipt of services.
-
Establish a
mechanism (possibly a registry) of treated individuals to monitor the
health effects and potential benefits of long-term treatment for ADHD,
particularly among pre-school age children. Additionally collect other
related outcomes such as school attainment, interface with judicial
system, work performance, and other pertinent variables.
-
Collaborate with
other organizations to educate and promote what is known about ADHD
interventions, appropriate standards of practice, their effectiveness,
and their safety.
-
Establish a resource
to the public for accurate and valid information about ADHD and
evidence-based interventions.
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Footnote
1
Although the DSM-IV (1994) cites a prevalence rate of 3-5% of school
age children, methodological issues in epidemiological research and the
evolving dynamics of the disorder have led to wide variations of reported
prevalence estimates that range from approximately one percent to nearly 20
percent of school age children.
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