The development of a health status for self report by people with intellectual disabilities

Background Health status is an important domain of quality of life of people with intellectual disabilities. This paper describes the development of a self-report health status measure for use with people with intellectual disabilities living in staffed community-based accommodation, and reports preliminary reliability data for the schedule. Method Question and response items were adapted from a well-established measure (SF-36) used in the general population incorporating subscales such as General Health, Physical Functioning, Bodily Pain, Vitality, Mental Health, and Sensory Functioning. A variety of closed and open response formats were used based on the growing literature examining methods for interviewing people with intellectual disabilities. Results Internal reliability and response consistency were investigated. Reliability for Physical Functioning, General Health and Bodily Pain was reasonable, but was unsatisfactory for Sensory Functioning, and Mental Health. Conclusions The findings are discussed in light of the challenge of eliciting reliable responses from people with intellectual disabilities. Question methodologies can be built upon in further research.