Public Health Issues in ADHD: Individual, System, and Cost Burden of the Disorder Workshop

May, 17, 1999

Participants:

Stephen Hinshaw, Ph.D., University of California, Berkeley
Pamela Peele, Ph.D., University of Pittsburgh
Louis Danielson, Ph.D., U.S. Department of Education

Little scientific research has addressed the cost of ADHD to the individual or society. Additionally, a framework to address the scope of economic consequences attributable to ADHD has not been adequately formulated to quantify the individual and social burden of ADHD in our society. Because of the many short- and long-term manifestations of the condition, the costs can be both direct and indirect, and can arise in myriad ways. A productive cost analysis of ADHD could be a useful tool in understanding the broader implications of the disorder at the population level, i.e. individual cost/burden of having the disorder, costs to social systems such as education and juvenile justice systems, as well as the areas of individual impairment that pose higher cost burden and/or have potential for prevention.

In an effort to discuss the burden of ADHD in our society as well as generate ideas for areas of needed research or investigation of economic costs as such, the Division of Birth Defects, Child Development, and Disability and Health (proposed)/NCEH hosted a one-day meeting with three researchers with expertise in the individual, social, and economic burden of ADHD and the NCEH ADHD work group comprised of DDB staff. Prior to the meeting Division of Birth Defects, Child Development, and Disability and Health (proposed) had identified and provided to all participants an outline of the specific issues and questions related to the social burden of ADHD. The questions and discussion that ensued resulted in the following points during this one day meeting:

Please note that all answers are the summarized sentiments of the participants invited to this meeting and not those of the CDC. Statements herein are not, in any way, to be interpreted as promissary for inclusion in any ADHD research agenda setting nor are they ADHD policy statements by the Centers for Disease Control and Prevention, National Center for Environmental Health. This meeting was exploratory in nature and the results are provided here in an attempt to share the most information with the public.

Q1a. In order to assess the burden of ADHD in our society, consideration of the individual impairments attributable to the disorder is required. In this framework, what are the physical, social, and long-term deficits that characterize ADHD?

The domains of impairment in ADHD include:

• academic achievement/school performance
• family life, peer/social interactions
• self-esteem/perceptions
• accidental injuries and adaptive functioning

Research Issues in individual impairment should consider the following:

• That a developmental trajectory perspective is appropriate, and that more research needs to be done on the cumulative effects of ADHD across domains.
• That objective measurements of impairment associated with ADHD should be employed.
• That the portion of impairment and social burden associated with ADHD due to comorbidity should be determined.
• That there is little research on the burden of ADHD in adulthood and that more research is needed on long-term outcomes.

Q1b. What are the most impaired areas of functioning and how do they affect individuals, their families, and life learning/functioning?

Individual Impairment (Functioning and Socialization):

• Compromised academic achievement/school performance and adult occupational attainment.
• Inability to socialize optimally; poor self-esteem/self-perceptions.
• Increased risk for accidental injuries and a lack of normal, adaptive functioning
• Increased likelihood that ADHD children will be rejected by their peers.
• The greatest predictor of delinquency, school drop out, and mental health problems in adulthood is peer rejection in the early elementary grades.
• Although the quality of the data is poor, early ADHD is related to both trivial and serious accidents. ADHD children are five times more likely to die by the age of 12 than are non-ADHD children.

Effects on Learning:

• ADHD children do worse on objective measures of achievement such as grades, group tests, and individual achievement tests (large effect size, 1-2 standard deviations). ADHD predicts other school-related impairments, such as special education placements, retention, and suspension. Up to 50% are suspended, 15% have math/reading disabilities, 80-90% are significantly behind in school by fourth, fifth, or sixth grade.
• Children with ADHD have problems applying the knowledge they have. Even those with normal IQ will have difficulty dressing without supervision and doing homework or chores.

Effects on Family Functioning:

• ADHD predicts marital discord, including higher divorce rates.

Q2. Having identified the impairments associated with the disorder, what are the cumulative effects on larger social systems such as education (schools), health care, correctional/juvenile justice, and others?

• The estimated educational cost of ADHD is about $3.5 – 4.0 billion annually although there is no systematic way to calculate the cost of ADHD for the nation; as even this rough estimate accounts only for the ADHD children receiving special education services.
• Additionally, it should be noted that ADHD is not a categorical disability and, therefore, children seeking educational services for this disorder are labeled Other Health Impaired or receive classification for a comorbid condition that is a categorical disability. Potential for a lack of needed service provision exists in this population.
• ADHD has a significant impact on adoptions and on the foster care system. Many adoptive or foster care children have ADHD.
• The effects of ADHD on these children, and on society, as they become adults, is unknown. Studies need to be conducted of labor market participation.
• Although it is not well-documented specifically for ADHD, the juvenile justice system is particularly inundated with juveniles exhibiting disruptive behavior disorder which is inclusive of ADHD.

Q3. What do we know and where are the lacunae in our knowledge regarding the direct costs to individuals/society due to ADHD?

• health and psychological care utilization costs (initial evaluation, referral and follow-up, office therapy, school-based accommodations, and pharmaceuticals)
• direct cost information by age and by other demographic characteristics (sex, family structure, urban/rural, region, race, income, employment of parents, associated medical and behavioral conditions, parents’ level of education, etc.)

There is little information in this area. Further research is recommended.

However, rough estimates using large insurance claims databases suggest the following:

• Using Medicaid managed care figures, including drug costs, the average reimbursement for total treatment costs of a child with ADHD was $1,795, as compared with $1,666 for a child with asthma.
• ADHD was the most common diagnosis for privately insured children (28%; large urban setting). Exclusive of medication, ADHD is inexpensive to treat when compared to other mental health diagnoses ($3.18 per employment costs for ADHD vs. $16.40 for depression).
• ADHD has a high family cost burden. Under private insurance, educational testing is not covered; neither are many of the behavioral treatments known to aid both academic and family functioning for these individuals. Data suggest that if the expenses must be paid out of pocket, parents tend not to bring children in for treatment early or to continue systematically to treat this chronic condition.

Q4. What do we know and where are the lacunae in our knowledge regarding the indirect costs to society due to ADHD?

• costs in school (special ed services, nursing and psych services, teacher training)
• costs outside of school during childhood and adolescence (including those related to delinquency, substance abuse, early childbearing, and injury)
• costs to family (medical, lost productivity, special accommodations)
• costs during adulthood (including reduced productivity and disruptive behaviors resulting in social costs such as–criminal activity, welfare, homelessness and substance abuse)
• There are few data available on family functioning, parenting stress, and parental competence, but existing data suggest that parents of children with ADHD are as highly stressed as parents of autistic children or of children with other disabilities.
• The economic impact of ADHD on the family is not known. Rigorous, long-term studies are needed in which a cohort is developed and followed. Comorbidity, family interactions, divorce, jobs, etc. should be included.
• The impact of ADHD on workforce participation both for parents of ADHD children and for ADHD adults is an area that little research has addressed. An estimation of such costs would illuminate the indirect costs of the disorder in our population.

Q5. Do we know whether, and by how much, treatment or special accommodations (any type) reduce any of the above-listed costs? Do we know enough about the prevention or treatment of ADHD to determine if there are areas that prevention efforts should be directed toward in order to reduce the cost burden associated with the disorder?

• It is hard to measure the developmental toll of ADHD. It is also hard to measure the toll in terms of what problems could have been avoided by intervening earlier with ADHD treatment. ADHD shifts over time, and its devastating impacts can be attenuated, but more research needs to be done on that subject.
• While ADHD alone does not predict delinquency, other things that occur with it, such as failure to bond, early-age aggression, psychiatric comorbidity, and parents with ADHD or psychopathology do.
• Early intervention that helps to engage ADHD children socially and academically in more child-centered environments may, at least partially, prevent the onset of adverse behaviors. ADHD should not and does not have to lead to arrest.
• More community-based interventions and education are needed, but the importance of behavior management is sometimes overlooked as an effective additional or alternative treatment method.