Measuring Participation: The Patient-Reported Outcomes Measurement Information System Experience

Abstract

Bode RK, Hahn EA, DeVellis R, Cella D, on behalf of the Patient-Reported Outcomes Measurement Information System Social Domain Working Group. Measuring participation: the Patient-Reported Outcomes Measurement Information System experience. Objectives To describe the lessons learned in the initial development of Patient-Reported Outcomes Measurement Information System social function item banks. Design Development and testing of 2 item pools within a general population to create item banks that measure ability to participate and satisfaction with participation in social activities. Setting Administration via the Internet. Participants General population members (N=956) of a national polling organization registry participated; data for 768 and 778 participants were used in the analysis. Interventions Not applicable. Main Outcome Measures Measures of ability to participate and satisfaction with participation in social activities. Results Fifty-six items measuring the ability to participate were essentially unidimensional but did not fit an item response theory model. As a result, item banks were not developed for these items. Of the 56 items measuring satisfaction with participation, 14 items measuring social roles and 12 items measuring discretionary activities were unidimensional and met item response theory model assumptions. Two 7-item short forms were also developed. Conclusions Four lessons, mostly concerning item content, were learned in the development of banks measuring social function. These lessons led to item revisions that are being tested in subsequent studies.