Content validity in the PROMIS social-health domain: a qualitative analysis of focus-group data
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.
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.
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.
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.
KeywordsEpidemiologic measurements Focus groups Outcome assessment (health care) Qualitative research Quality of life
Family and friends
Health-related quality of life
National Institutes of Health
Patient-Reported Outcomes Measurement Information System
Role participation performance
Role participation satisfaction
University of North Carolina at Chapel Hill
World Health Organization
Western Psychiatric Institute and Clinic (University of Pittsburgh)
The Patient-Reported Outcomes Measurement Information System (PROMIS) is a National Institutes of Health (NIH) Roadmap initiative to develop a computerized system measuring patient-reported outcomes in respondents with a wide range of chronic diseases and demographic characteristics. PROMIS was funded by cooperative agreements to a Statistical Coordinating Center (Evanston Northwestern Healthcare, PI: David Cella, PhD, U01AR52177) and six Primary Research Sites (Duke University, PI: Kevin Weinfurt, PhD, U01AR52186; University of North Carolina, PI: Darren DeWalt, MD, MPH, U01AR52181; University of Pittsburgh, PI: Paul A. Pilkonis, PhD, U01AR52155; Stanford University, PI: James Fries, MD, U01AR52158; Stony Brook University, PI: Arthur Stone, PhD, U01AR52170; and University of Washington, PI: Dagmar Amtmann, PhD, U01AR52171). NIH Science Officers on this project are William Riley, Ph.D., Susan Czajkowski, PhD, Lawrence Fine, MD, DrPH, Louis Quatrano, PhD, Bryce Reeve, PhD, James Witter, MD, and Susana Serrate-Sztein, PhD. This manuscript was reviewed by the PROMIS Publications Subcommittee prior to external peer review. See the Web site at www.nihpromis.org for additional information on the PROMIS cooperative group. This work was also supported by AHRQ National Research Service Award Research Training Grant T32 HS000032–17.
We gratefully acknowledge the editorial assistance provided by David Cella of Evanston Northwestern Healthcare, as well as the data coding efforts of the three raters at the UNC site: Katherine Buysse, Jessica Dilday, and Ashley Hink. Significant acknowledgements at the Pittsburgh site include Emily Huisman, Catherine Maihoefer, and Nathan Dodds.
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