Review of Health Status Measures Study

Principal Investigator: Gloria Krahn, PhD, MPH; Trevor Hall, PsyD

Many of the most common measurements of health status (SF-36, SIP, etc.) confound functional status and health and therefore inaccurately represent the health status of people living with disabilities. This study will utilize a panel of health status measurement and disability experts to develop consensus on desired characteristics of a health assessment tool(s) for people with disabilities. Panel members will evaluate current measures for adequacy to assess health status of people with disabilities (per these desired characteristics and the criteria of the Scientific Advisory Committee of the Medical Outcomes Trust, and provide guidance on the development of a new tool or tools (R8).

Hypothesis: There is no health status tool currently available for people with disabilities that is unbiased to functional ability and that is sensitive to change due to interventions.

Sample: 1) All HRQOL and Health Status measures reported in the literature from 1995 to 2004.
2) Expert panel of 12 nationally recognized researchers, interventionists and disability advocates.

Data Collection and Measurement: A literature search on Medline, PsychInfo, PubMed, Web of Science, and EBSCO as well as the PROQOLID?? Database for all literature references to disabilities and QOL, HRQOL or health status will be examined for references to generic measures. This will supplement the reviews already available through Andresen & Meyers (2000), Garrett et al. (2002), the summary of health related measures developed by Nosek and colleagues (www.crowdbcm.net/measures/Measures_index.htm), and those compiled by the authors to date. The review will specifically attend to: 1) conceptual distinction of functional ability from health; and 2) responsiveness to change over time or as a result of intervention. This information will be summarized and presented to the expert panel. The expert panel process is already described in R4 above. The charge to the Measurement panel will be to: 1) develop consensus on domains of health status for measurement development and on desired characteristics of a health assessment tool(s) for people with disabilities (e.g., conceptualization of health status, single vs multiple dimensions, length, concurrent validity), 2) evaluate current measures for adequacy to assess health status of people with disabilities (per these desired characteristics and the criteria of the Scientific Advisory Committee of the Medical Outcomes Trust, (2002), and 3) provide guidance on the development of a new tool or tools (R8).

Data Analysis Methods: Consensus (and if necessary, 2/3 voting procedures) of the expert panel will constitute the data analysis methods for determining whether there is a health status tool currently available that does not confound health with functional status and is responsive to change.

Anticipated Findings: That there is no health status tool currently available for people with disabilities that is unbiased to functional ability and that is sensitive to change due to interventions. The Expert Panel will have developed consensus on a conceptualization of health status for persons with disabilities, and desired psychometric and conceptual characteristics of a measure. These will be used in R8.