The Development of a Health Status Measure for Self‐report by People with Intellectual Disabilities

Abstract

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.

Ageing and health status in adults with intellectual disabilities: Results of the European POMONA II study

“…Several approaches have been developed to encourage regular health checks that are targeted to the health needs of young and old adults with ID such as the Cardiff Checklist (Baxter et al, 2006), Comprehensive Health Assessment Program (CHAP, Lennox, & Eastgate, 2004), the Self-Report Health Status Measure (Ruddick & Oliver, 2005), and the Health Assessment Instrument (Fender, Marsden, & Starr, 2007;Starr & Marsden, 2008). In countries without regular and comprehensive health assessments for older people with ID, the implementation of such systematic methods are highly recommended to detect any health condition at a very early stage for treatment.…”

Quality of life assessment in intellectual disabilities: The Escala Pessoal de Resultados versus the World Health Quality of Life-BREF

“…Besides, each person has different perceptions and individual interpretation that influence the responses (Camfield & Skevington, 2008;Gardner & Carran, 2005;Kayes & McPherson, 2010). A Likert scale is useful for assessing concrete tasks in people with ID, but is not enough in assessing the abstract concepts or reporting subjective experiences (Ruddick & Oliver, 2005). In addition, ''problems may result from difficulties in aggregating specific instances to make a general evaluation, from a lack of expressive abilities, or from a lack of understanding of certain concepts'' (Finlay & Lyons, 2001, p. 321).…”

“…Most researchers argue that the description of individual experiences is required in QOL assessment (Cummins, 2005;Hartley & MacLean, 2006;Kusel et al, 2007;Li, Tsoi, Zhang, Chen, & Wang, 2013;Ruddick & Oliver, 2005;Schalock & Verdugo, 2002;Schalock et al, 2007;Schalock, 2004). Furthermore, the complementary use of both self-reported and proxy scales may promote the best measurement of performance and capacity (Camfield & Skevington, 2008;Finlay & Lyons, 2001;Hartley & MacLean, 2006;Kayes & McPherson, 2010;Schalock & Verdugo, 2002;Schalock, 2004).…”

Health of ageing people with intellectual disability and the role of the nurse in Ireland

“…While health checks from the general population have been used or adapted such as the Comprehensive Gerontological Assessment and others have been devised for adults with intellectual disability such as the Cardiff checklist (Baxter et al, 2006) and the Comprehensive Health Assessment Program (CHAP; Lennox et al, 2004), the RNID has to consider these in relation to their applicability to the range of disability and cognitive function of the individual been assessed. Others such as Ruddick and Oliver (2005) developed a self-reporting health status measure for people with intellectual disability and Fender et al (2007) developed a health assessment based on the CHAP to include self-defined health and consider functional age but again the RNID needs to be aware that these tools need further evaluation before assertions of general applicability can be made.…”