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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The authors have no conflicts of interest to report.
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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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DOI: https://doi.org/10.1007/s11136-017-1686-2