Ascertaining Health‐Related Information on Adults With Intellectual Disabilities: Development and Field Testing of the Rochester Health Status Survey
In: Journal of policy and practice in intellectual disabilities: official journal of the International Association for the Scientific Study of Intellectual Disabilities, Band 5, Heft 1, S. 12-23
ISSN: 1741-1130
Abstract There is a growing need for researchers and service providers to ascertain and track health status and health care utilization among adults with intellectual disabilities as they pass through the lifespan. This paper reports the development and field testing of the Rochester Health Status Survey (RHSS), a survey instrument that identifies incidence, lifetime prevalence, and point prevalence of diseases common in adults, as well as functional abilities and medication usage. The instrument also provides information about health system access and utilization. The survey is designed to be completed from chart review. An initial version of the survey was developed in 1998, revised in 2003, and then validated on a cohort of adults ages 21 to 73 years living in supervised community residences in the U.S. The RHSS includes 51 questions and requires about 45 min to complete. In the present study, data were collected on each subject by 3 different respondents (a service coordinator, a nurse, and when available, a family member). Their responses were compared item by item with the responses of the second author, a developmental disabilities geriatrician, who also completed the survey on each subject. Correlations and Kappa statistics confirmed that the highest agreement scores occurred between nurses and the geriatrician.