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Content validity in the PROMIS social-health domain: a qualitative analysis of focus-group data

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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.

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Abbreviations

F:

Family and friends

HRO:

Health-related outcome(s)

HRQoL:

Health-related quality of life

L:

Leisure

NIH:

National Institutes of Health

PRO(s):

Patient-reported outcome(s)

PROMIS:

Patient-Reported Outcomes Measurement Information System

RPP:

Role participation performance

RPS:

Role participation satisfaction

UNC:

University of North Carolina at Chapel Hill

W:

Work

WHO:

World Health Organization

WPIC:

Western Psychiatric Institute and Clinic (University of Pittsburgh)

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Acknowledgements

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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Authors and Affiliations

Authors

Corresponding author

Correspondence to Liana D. Castel.

Additional information

L. D. Castel, R. F. DeVellis, D. A. DeWalt, D. E. Irwin, and K. Williams conceived of and designed the study. L. D. Castel, D. E. Irwin, A. Stover, and K. A. Williams conducted the data collection. H. B. Bosworth, L. D. Castel, D. A. DeWalt, E. A. Hahn, S. V. Eisen, M. A. R. Kelly, D. E. Irwin, A. Stover, J. Morse, and K. A. Williams carried out analysis and interpretation. L. D. Castel created the initial draft of the article. H. B. Bosworth, R. F. DeVellis, D. A. DeWalt, E. A. Hahn, S. V. Eisen, D. E. Irwin, M. A. R. Kelly, A. Stover, J. Morse, and K. A. Williams aided in subsequent drafting and critical revision. D. A. DeWalt and R. F. DeVellis obtained funding. L. D. Castel held overall responsibility for this work. All authors read and approved the final manuscript.

Appendix

Appendix

Focus-group discussion guide for social-health focus groups

  1. 1.

    [Introductions] Let’s begin by going around the room and introducing ourselves to the group. First, tell us your name, then, tell us an example of something you do because you are expected to, and then follow-up with an example of something you do just because you like doing it. Who would like to start?

    • Follow-up: Let’s make these examples more specific. Thinking about your paid work or things you have done as a homemaker over the past 30 days, what are some things you were expected to do and things you just enjoyed doing?

    • Follow-up: Thinking about the things you have done with family and friends in the past 30 days, what were some things you were expected to do and things you just enjoyed doing?

    • Follow-up: Thinking about the things you have done for leisure and recreation in the past 30 days, what were some things you were expected to do and things you just enjoyed doing?

    • Follow-up: So far, we have discussed things we feel we should do or things we like to do that fall into the category of work, family, or leisure. What other categories of activities, if any, should be added to this list?

  2. 2.

    [Recent health impacts] If we have health problems, it can sometimes be hard to do the things we think we should do or the things we just like to do. Thinking about your own lives over the past 30 days, what are some ways, if any, that your health problems have made it harder for you to do things you just enjoyed doing?

    • Follow-up: Thinking again about the past 30 days, what are some ways, if any, that your health problems made it harder for you to do things you just enjoyed doing?

    • Follow-up: How about with any roles not yet mentioned?

  3. 3.

    [Long-term health impacts] Let’s shift topics a bit. Let’s talk about ways that the things you do now have changed, if at all, from the way they were before you began having to cope with your chronic health condition. As before, we will focus separately on work, family, and friends, and then leisure.

    • Follow-up: How have things changed, if at all, with the things you do at work, or in carrying out your homemaking responsibilities?

    • Follow-up: How have things changed, if at all, with the things you do with your family and friends?

    • Follow-up: Has your chronic health problem affected how you get along with your family or friends? If so, how?

    • Follow-up: How have things changed, if at all, with the things you do for leisure time or recreation?

  4. 4.

    [Coping] Take a moment now to remember how life was before you started to have chronic health problems and the changes you have had to make to cope with them.

    • Follow-up: Which of the changes in your work, relationships, or leisure activities caused by your health condition have been the most disruptive or unpleasant?

    • Follow-up: Which changes have been harder for you: the changes you have been forced to make in the things you’re expected to do or those changes you have made in things you do just for enjoyment?

    • Follow-up: What has made one kind of change harder than the other?

  5. 5.

    [Other health impacts] We have just discussed a number of ways that your chronic health conditions have affected your lives. In the past 30 days, have those health conditions limited any of you in areas other than those we discussed today? If so, how?

  6. 6.

    [Time frame – 30 days vs. 7 days] We have just discussed a number of ways that chronic health conditions have affected your life over the past 30 days. If we had asked you about the impact of chronic health conditions on your life over the past 7 days, how would your responses have been different?

  7. 7.

    [Close] We are coming to the end of this session. I have asked you a lot of questions about how chronic illnesses affect your lives. What other questions, if any, should we be asking?

    • Follow-up: And, finally, what final thoughts or comments would you like to add before we close?

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Castel, L.D., Williams, K.A., Bosworth, H.B. et al. Content validity in the PROMIS social-health domain: a qualitative analysis of focus-group data. Qual Life Res 17, 737–749 (2008). https://doi.org/10.1007/s11136-008-9352-3

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