Abstract

PURPOSE:

Our aim was to assess the content validity of the Patient-Reported Outcomes Measurement Information System (PROMIS) social health item banks by comparing a prespecified conceptual model with concepts that focus-group participants identified as important social-health-related outcomes. These data will inform the process of improving health-related quality-of-life measures.

METHODS:

Twenty-five patients with a range of social limitations due to chronic health conditions were recruited at two sites; four focus groups were conducted. Raters independently classified participants' statements using a hierarchical, nested schema that included health-related outcomes, role performance, role satisfaction, family/friends, work, and leisure.

RESULTS:

Key themes that emerged were fulfilling both family and work responsibilities and the distinction between activities done out of responsibility versus enjoyment. Although focus-group participants identified volunteerism and pet ownership as important social-health-related concepts, these were not in our original conceptual model. The concept of satisfaction was often found to overlap with the concept of performance.

CONCLUSION:

Our conceptual model appears comprehensive but is being further refined to more appropriately (a) distinguish between responsibilities versus discretionary activities, and (b) situate the outcome of satisfaction as it relates to impairment in social and other domains of health.