Health Surveillance of People with Cognitive Disabilities

The Behavioral Risk Factor Surveillance System (BRFSS), while an effective tool for health surveillance of the general population, does not typically survey people with cognitive impairments. Finlay and Lyons (2001) identified a number of methodological issues in interviewing and using questionnaires with people who have cognitive disabilities. These include: question content, phrasing, response format, and psychometric properties. A change in the philosophy of services which promotes self-determination and independent living makes it more important to collect health information directly from people with disabilities, regardless of the type of disability.

To address this need for health behavior information, the authors adapted the BRFSS for use by people with cognitive disabilities. Strategies suggested by Finlay and Lyons (2001) and common practices in adapting educational curriculum were used. Primary approaches included: reduction in the number of questions asked; lowered language level; pictures/symbols to illustrate ideas; and dichotomous response sets. Face to face interviews were conducted by professionals who have experience in communicating with people who have cognitive disabilities. Upon completion of interview, interviewers rated the perceived validity of the information obtained.

155 participants age 18 and older, with cognitive disabilities, completed the survey. 71% reported a chronic health condition and 44% reported more than one condition. The Arkansas BRFSS indicates that the rate for chronic disease among people aged 18 and older without disability is 24% and the rate of co-morbidity among this group is 7%. Additional data will be presented regarding risk factors (smoking, obesity/overweight, activity levels) and response validity.