Health-related quality of life outcomes measures

Objective: To review critically the features of measures of generic health- related quality of life (HRQOL) for disability outcomes research. Data Sources: A search of electronic databases, summary reviews, books, and government documents was performed. Comment and experiences from participa nts of a conference on outcomes research were also incorporated. Study Selection: English language literature from scientists from a broad r ange of disciplines and research settings, including medicine, nursing, soc ial science, and public health, and health services research and practice. Data Extraction: A critical review of measures that have been or might be u sed to measure disability outcomes. Data Synthesis: Commonly used generic measures of HRQOL can be applied to d isability outcomes research with some caveats. Three common tools are the M edical Outcomes Study Short-Form Health Survey (SF-36), Sickness Impact Pro file (SIP), and Quality of Well-Being (QWB) scale. The SF-36 and SIP have b een used with some success in research with people with disability. The QWB scale has been used less frequently. Conclusion: Most studies using generic HRQOL tools are of groups with speci fic impairments rather than heterogeneous groups of people with disability. None of the tools appears to measure HRQOL without some potential biases l eg, inappropriate wording) for people with disability, but more specific te sting of these problems is needed. Also needed are studies to determine whe ther these tools can measure meaningful longitudinal changes.