Health Characteristics and Access to Healthcare Services of Adults with Down Syndrome

This project is made possible with funding from The Columbus Foundation Grant # TFB11-0357 TG

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Persons with intellectual and developmental disabilities experience a different level of health than typically developing peers. This health differential is often described in terms of health disparities – which refers to differences caused or facilitated by social or access issues. In a seminal paper, Whitehead (1992) asserted the importance of health disparities noting that disadvantage in health was closely linked to poor outcome across a range of health measures – not least mortality.

Following growing concerns regarding the health status of people with intellectual disability, the US Surgeon General commissioned a national conference and report that examined the health disparities of persons with intellectual disability. The US Surgeon General’s report concluded the following: “Like other Americans, persons with mental retardation [now referred to as intellectual disability] grow up, grow old, and need good health and health care services in their communities. But people with MR, their families, and their advocates report exceptional challenges in staying healthy and getting appropriate health services when they are sick. They feel excluded from public campaigns to promote wellness. They describe shortages of health care professionals who are willing to accept them as patients and who know how to meet their specialized needs.” (U.S. Surgeon General’s Office, 2002: Closing the Gap: Report of the Surgeon General’s Conference on Health Disparities and Mental Retardation; p. xi).

Research has shown that individuals with intellectual disability receive fewer routine and preventative services such as blood pressure checks, and cholesterol and cancer screenings (Kirschner, Breslin, & Iezzoni, 2007; Havercamp, Scandlin, & Roth, 2004). It has been reported that individuals with intellectual disability must contact on average 50 physicians before they can find one who has been trained to treat persons with disabilities (Corbin, Holder, & Engstrom, 2005). There is clearly an increasing need to better train medical and dental students on issues related to oral and healthcare needs of individuals with intellectual and developmental disabilities (Holder, Waldman, & Hood, 2009).

Down syndrome is the most frequent genetic condition associated with intellectual disability. The Centers for Disease Control and Prevention (CDC) reported a slight increase in the prevalence of Down syndrome over the past decade. Down syndrome occurs in approximately 1 in 690 births. Because of associated congenital health issues, life expectancy of individuals with Down syndrome is generally lower than the general population. However, according to the CDC, people with Down syndrome in the United States live much longer now than 30 years ago. Current average life expectancy of individuals with Down syndrome is approximately 55 years of age, with many living well into their 60s and 70s.

Adults with Down syndrome have significantly higher tendency of being overweight than the adults from the general population (Rubin, Rimmer, Chocoine, Braddock, & McGuire, 1998). Being overweight is a major risk factor for many chronic diseases, including heart disease, Type II diabetes, and arthritis (Leon, Koupilova, Lithell, & McKeigue, 1996). Being overweight also exacerbates other health problems, such as high blood pressure and high blood cholesterol.

Partners

  • The Ohio State University, Nisonger Center – University Center for Excellence in Developmental Disabilities
  • The Ohio State University – Adult Down Syndrome Clinic
  • Down Syndrome Association of Central Ohio
  • DownSyndrome Achieves
  • Franklin County Board of Developmental Disabilities

Interdisciplinary Project Team

  • Marc J. Tassé, PhD, Director Nisonger Center, Professor of Psychology and Psychiatry. OSU.
  • Susan M. Havercamp, PhD, Director of Health Promotion and Healthcare Disparities at the Nisonger, Center, Associate Professor of Psychiatry and Psychology. OSU.
  • Betsey A. Benson, PhD, Director of Adult Behavior Support Services at the Nisonger Center, Associate Professor of Clinical Psychiatry and Psychology. OSU.
  • Kandamurugu Manickam, MD, Assistant Professor, Department of Clinical Medicine/Division of Human Genetics, OSU Medical Center.
  • Dawn C. Allain, MS, CGC, Certified Genetic Counselor, Assistant Professor, Division of Human Genetics, Department of Clinical Internal Medicine, OSU Medical Center.
  • Suzanne Davis, BA, Student Research Assistant, Nisonger Center, OSU.

References

Corbin S., Holder M., Engstrom K. (2005). Changing attitudes, changing the world: the health and health care of people with intellectual disabilities. Washington, D.C.: Special Olympics International.
Havercamp, S. M., Scandlin, D., & Roth, M. (2004). Health disparities among adults with developmental disabilities, adults with other disabilities, and adults not reporting disability in North Carolina. Public Health Reports, 119, 428-426.
Holder, M., Waldman, H. B., & Hood, H. (2009). Preparing Health Professionals to Provide Care to Individuals with Disabilities. International Journal of Oral Science, 1, 66–71.
Kirschner K. L., Breslin, M L., & Iezzoni, L I., (2007). Structural impairments that limit access to health care for patients with disabilities. Journal of American Medical Association, 297, 1121-1125.
Leon, D. A., Koupilova, I., Lithell, H.O., & McKeigue, P. M. (1996). Failure to realize growth potential in utero and adult obesity in relation to blood pressure in 50 year old Swedish men. British Medical Journal, 312, 401-406.
Rubin, S. S., Rimmer, J. H., Chicoine, B., Braddock, D., & McGuire, D. E. (1998). Overweight Prevalence in Persons with Down Syndrome. Mental Retardation, 36, 175-181.
US Department of Health and Social Services (2002) The Report on the Surgeon General’s Conference on Health Disparities and Mental Retardation. US Department of Health and Social Services, Washington.
Whitehead M. (1992) The concepts and principles of equity and health. International Journal of Health Services, 22, 429–445.