Issues affecting the selection of participation measurement in outcomes research and clinical trials.
The ever-growing number of participation measures without consensus on which is best makes it difficult to determine which measure to use in rehabilitation research and clinical trials. In an effort to address issues affecting the selection of a participation measure for a specific research purpose, this article (1) outlines the types and characteristics of participation measures, (2) enumerates various uses of participation measures in disability and rehabilitation research, (3) discusses appropriate matching of the type of participation measure with the research task, and (4) offers recommendations for future participation research. Participation instruments vary in terms of their degree of participation specificity, the conceptual model that underlies their development, whether they include multiple domains or take a more global approach, the extent to which they are objective versus subjective, whether they use general population norms, who is the respondent, the method of item and scale development, and their psychometric properties. Participation measures are used in individual and population assessments, observational research, and interventional research. Selection of a participation measure for use in a specific study requires an understanding of the characteristics of available tools and the nature of the research design, but most importantly, it requires matching the instrument to the specific research question or hypothesis. Instruments assessing participation are currently appropriate as secondary outcomes in trials evaluating interventions targeting activity limitation, and they will become appropriate as primary outcomes when interventions are tested that target participation directly. It will be easier to apply participation measures appropriately to their many research uses once substantial progress is made in obtaining better participation measurements and consensus is reached about the best tools.
Whiteneck
Gale G
GG
Department of Research, Craig Hospital, Englewood, CO, USA. gale@craig-hospital.org
D002986:Clinical Trials as Topic / Q000379:methods*; D006801:Humans; D017063:Outcome Assessment, Health Care / Q000379:methods*; D010358:Patient Participation / Q000379:methods* / Q000523:psychology; D012046:Rehabilitation; D012107:Research Design; D011795:Surveys and Questionnaires