Project Description:
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. The overall goal of our project is to assess the health characteristics and access to healthcare services of adults with Down syndrome. We hope to achieve this goal by getting health information on 300 adults with Down syndrome. In addition to getting information on 300 adults with Down syndrome on our online health questionnaire, our second objective is to collect more specific and detailed health metrics on 75 adults with Down syndrome through a complete physical examination and family history.
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.
Keyword(s):
Down syndrome, health status, healthcare, disparities
Unserved or Under-served Populations:
Disadvantaged Circumstances, Geographic Areas, Urban, Specific Groups
