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Selection of key health domains from PROMIS® for a generic preference-based scoring system

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Abstract

Purpose

We sought to select a parsimonious subset of domains from the patient-reported outcomes measurement information system (PROMIS®) that could be used for preference-based valuation. Domain selection criteria included face validity, comprehensiveness, and structural independence.

Methods

First, 9 health outcomes measurement experts selected domains appropriate for a general health measure using a modified Delphi procedure. Second, 50 adult community members assessed structural independence of domain pairs. For each pair, the participant was asked if it were possible to have simultaneously good functioning in domain 1 but poor functioning in domain 2, and vice versa. The community members also rated the relative importance of the domains. Finally, the experts selected domains, guided by community members’ judgments of structural independence and importance.

Results

After 3 rounds of surveys, the experts agreed on 10 potential domains. The percent of pairs deemed structurally independent by community members ranged from 50 to 95 (mean = 78). Physical Function, Pain Interference, and Depression were retained because of their inclusion in existing preference-based measures and their importance to community members. Four other domains were added because they were important to community members and judged to be independent by at least 67% of respondents: Cognitive Function—Abilities; Fatigue; Ability to Participate in Social Roles and Activities; and Sleep Disturbance.

Conclusion

With input from measurement experts and community members, we selected 7 PROMIS domains that can be used to create a preference-based score.

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Acknowledgements

Janel Hanmer was supported by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number KL2TR001856. Participant recruitment was completed by the Clinical and Translational Science Institute at the University of Pittsburgh, which is supported by the National Institutes of Health Clinical and Translational Science Award program, Grants UL1RR024153 and UL1TR000005. The funding agreements ensured the authors’ independence in designing the study, interpreting the data, writing, and publishing the report.

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Authors and Affiliations

  1. Department of General Internal Medicine, University of Pittsburgh Medical Center, 230 McKee Place, Suite 600, Pittsburgh, PA, 15213, USA

    Janel Hanmer & Lan Yu

  2. Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    David Cella

  3. Department of Economics, McMaster University, Hamilton, ON, Canada

    David Feeny

  4. Health Utilities Incorporated, Dundas, ON, Canada

    David Feeny

  5. Department of Engineering and Public Policy and Institute for Politics and Strategy, Carnegie Mellon University, Pittsburgh, PA, USA

    Baruch Fischhoff

  6. Division of General Internal Medicine & Health Services Research, UCLA, Los Angeles, CA, USA

    Ron D. Hays

  7. Division of Health System Innovation and Research, University of Utah Schools of the Health Sciences, Salt Lake City, UT, USA

    Rachel Hess

  8. Department of Psychiatry, University of Pittsburgh Medical Center, Pittsburgh, PA, USA

    Paul A. Pilkonis

  9. Outcomes Research, Evidera, Bethesda, MD, USA

    Dennis Revicki

  10. Department of General Internal Medicine, University of Pittsburgh Medical Center, Pittsburgh, PA, USA

    Mark Roberts

  11. Department of Health Policy and Management, University of Pittsburgh, Pittsburgh, PA, USA

    Mark Roberts

  12. Division of General Internal Medicine, University of Cincinnati College of Medicine and Cincinnati VA Medical Center, Cincinnati, OH, USA

    Joel Tsevat

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  1. Janel Hanmer
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  2. David Cella
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  3. David Feeny
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  4. Baruch Fischhoff
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  5. Ron D. Hays
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  6. Rachel Hess
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  7. Paul A. Pilkonis
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  8. Dennis Revicki
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  9. Mark Roberts
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  10. Joel Tsevat
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  11. Lan Yu
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Corresponding author

Correspondence to Janel Hanmer.

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Conflict of interest

The authors have no conflicts of interest to report.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. IRB approval for the project was obtained from the University of Pittsburgh (PRO14070021 and PRO14100533).

Appendix A: 37 adult PROMIS item banks considered for inclusion

Appendix A: 37 adult PROMIS item banks considered for inclusion

Emotional Distress—Anger

Emotional Distress—Anxiety

Emotional Distress—Depression

Cognitive Function—Abilities

Cognitive Function—General Concerns

Psychosocial Illness Impact—Positive

Psychosocial Illness Impact—Negative

Alcohol—Alcohol Use

Alcohol—Positive Consequences

Alcohol—Negative Consequences

Alcohol—Positive Expectancies

Alcohol—Negative Expectancies

Fatigue

Pain—Behavior

Pain—Interference

Pain Intensity

Physical Function

Physical Function for Mobility Aid Users

Mobility

Upper Extremity

Sleep Disturbance

Sleep-Related Impairment

Sexual Function and Satisfaction: Global Satisfaction with Sex Life

Sexual Function and Satisfaction: Interest in Sexual Activity

Sexual Function and Satisfaction: Lubrication

Sexual Function and Satisfaction: Vaginal Discomfort

Sexual Function and Satisfaction: Erectile Function

Satisfaction with Participation in Discretionary Social Activities (v1.0)

Satisfaction with Social Roles and Activities (v1.0)

Satisfaction with Social Roles and Activities (v2.0)

Ability to Participate in Social Roles and Activities

Companionship

Informational Support

Emotional Support

Instrumental Support

Social Isolation

Global Health

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Hanmer, J., Cella, D., Feeny, D. et al. Selection of key health domains from PROMIS® for a generic preference-based scoring system. Qual Life Res 26, 3377–3385 (2017). https://doi.org/10.1007/s11136-017-1686-2

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