Measures of social outcomes in disability research

Objectives: To describe instruments that have been developed to quantify (aspects of) social outcomes in research on persons with a disability, and to evaluate the clinimetric characteristics of some of the more prominent and promising measures. Data Sources: Literature in social health, social psychiatry, developmental disabilities, independent living, gerontology, medical rehabilitation, and quality of life studies. Study Selection: Social outcomes are defined as those changes or differences in the social functioning (broadIy defined) of persons with disabilities that result directly or indirectly from impairments and functional limitations. Excluded were measures that focus on purely physical or psychologic aspects of functioning, apply to children only, or quantify 1 social domain only. Data Extraction: For 16 instruments the distribution of items across the participation domains of the International Classification of Impairments, Activities, and Participation is presented, as well as a distribution of items by metrics used. For 5, clinimetric information from published studies were reviewed and summarized in letter grades. Data Synthesis: Several instruments have broad coverage, acceptable respondent burden, and moderate to good reliability, validity, and sensitivity. Conclusions: Social outcomes should be more routinely included in disability and rehabilitation research. Recommendations for selection and further development are made.