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 Center 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.
We propose to conduct an online health questionnaire (i.e., using Survey Monkey) of adults with Down syndrome to study their health status, access to healthcare, and routine medical screenings/care. In addition, we will perform physical examinations and obtain family histories on a subset of individuals from the Columbus area who have completed the online health questionnaire.
An internet-based health questionnaire will be used to collect basic demographic information, current health information using the SF-36 Health Survey and as well as other relevant health information (e.g., weight, height, last physical exam, dental exam, cancer screenings) and access to health care information (e.g., do you have a primary care physician, do you have a regular dentist). The health questionnaire will be completed by a parent, grandparent, adult sibling, or other caregiver who knows well the adult with Down syndrome and his/her health behaviors. The questions on our online health questionnaire will be written in such a manner as to allow us to compare the responses from our anonymous sample to a larger state and national sample of adults with developmental disabilities (e.g., drawn from the National Core Indicators) as well as adults from the general population (e.g., Behavioral Risk Factor Surveillance System; BRFSS). We estimate the online health questionnaire will take approximately 15-20 minutes to complete. All data collected will be anonymous, with no personal health information identifiers attached. Completion of the anonymous health questionnaire implies consent. At the end of the health questionnaire, persons interested in participated in the physical examination and family history portion of our study will be invited to contact our research team via phone or email.
The second component of our project involving a physical examination and obtaining family history will require written informed consent by a legally authorized representative (LAR) to the subject. The physical examination will take approximately 20 minutes and will include: blood pressure, weight, height, hip and waist circumference measurement, family history interview, and blood draw. The blood draw will be used to run analyses to obtain the following medical information: triglycerides, thyroid function, blood glucose, cholesterol levels, DNA, celiac disease, and PSA (men). In addition, medical records if available will be reviewed to capture results from previous sleep studies, bone density measurements, and neurological assessments.
Online Questionnaire: We hope to recruit individuals from primarily Central Ohio but will open the recruitment of participants to complete the online questionnaire to other regions of Ohio as well. Individuals will be contacted through various organizations and activities such as: Down Syndrome Association of Central Ohio (DSACO), DownSyndrome Achieves, Franklin County Board of DD Support Service Administrators, Special Olympics, other County Boards of DD, Down Syndrome Association of Central Ohio Annual Adult Conference (Aug. 2011) and Buddy Walk (Oct. 2011), Ohio DD Council, and Ohio Legal Rights. We will recruit participants for our study through the aforementioned Association/organization newsletters, listserv announcements, blogs, websites, and conferences. These advertisements will provide a URL Link to the health questionnaire. If participants are willing to participate in the research they will click or type in the URL and complete the online health questionnaire.
Physical Examination: The last question of the health questionnaire, which will not be linked to any of the submitted data will ask if participants live in the Columbus area and if they are interested in participating in an in-person physical examination. We are limiting the recruitment to the physical examination to individuals living in the Columbus are to contain travel costs associated with traveling to our clinic and increase the likelihood of follow-through if the travel burden is reasonable. In addition, we will recruit participants for the physical examination at the DSACO Annual Adult Down Syndrome Conference in August as well as at the State Summer Games held at the Ohio State University (June 24-26, 2011).
Health Questionnaire Participants: We will offer the adults with Down syndrome on whom the online health questionnaire is completed a $5.00 gift card from a sporting goods store (e.g., Dick’s or Sports Authority) and an opportunity to be entered into a drawing to win one of three combination Wii + Wii Fit systems. We feel strongly about including incentives that are congruent with the health theme of our study.
Physical Examination Participants: We will offer each adult with Down syndrome completing the physical examination a $50 gift card from a sporting goods store (e.g., Dick’s or Sports Authority) and an opportunity to be entered in a drawing and have the chance of winning one of the 5 combination Wii + Wii Fit systems that will be raffled off. In addition, the accompanying parent/relative or staff will be given a $5.00 gas card to help reimburse them for costs associated with driving the adult with DS to the clinic.
- 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.
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.
If you or someone you know is interested in participating, the following link will take you to the survey: http://www.surveymonkey.com/s/DS_Health_Survey
For questions, contact: Suzanne Davis, Study Coordinator at firstname.lastname@example.org