Quality of Life Research

, Volume 22, Issue 8, pp 1889–1905 | Cite as

ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research

  • Bryce B. Reeve
  • Kathleen W. Wyrwich
  • Albert W. Wu
  • Galina Velikova
  • Caroline B. Terwee
  • Claire F. Snyder
  • Carolyn Schwartz
  • Dennis A. Revicki
  • Carol M. Moinpour
  • Lori D. McLeod
  • Jessica C. Lyons
  • William R. Lenderking
  • Pamela S. Hinds
  • Ron D. Hays
  • Joanne Greenhalgh
  • Richard Gershon
  • David Feeny
  • Peter M. Fayers
  • David Cella
  • Michael Brundage
  • Sara Ahmed
  • Neil K. Aaronson
  • Zeeshan Butt
Article

Abstract

Purpose

An essential aspect of patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) is the integration of patient perspectives and experiences with clinical data to evaluate interventions. Thus, PCOR and CER require capturing patient-reported outcome (PRO) data appropriately to inform research, healthcare delivery, and policy. This initiative’s goal was to identify minimum standards for the design and selection of a PRO measure for use in PCOR and CER.

Methods

We performed a literature review to find existing guidelines for the selection of PRO measures. We also conducted an online survey of the International Society for Quality of Life Research (ISOQOL) membership to solicit input on PRO standards. A standard was designated as “recommended” when >50 % respondents endorsed it as “required as a minimum standard.”

Results

The literature review identified 387 articles. Survey response rate was 120 of 506 ISOQOL members. The respondents had an average of 15 years experience in PRO research, and 89 % felt competent or very competent providing feedback. Final recommendations for PRO measure standards included: documentation of the conceptual and measurement model; evidence for reliability, validity (content validity, construct validity, responsiveness); interpretability of scores; quality translation, and acceptable patient and investigator burden.

Conclusion

The development of these minimum measurement standards is intended to promote the appropriate use of PRO measures to inform PCOR and CER, which in turn can improve the effectiveness and efficiency of healthcare delivery. A next step is to expand these minimum standards to identify best practices for selecting decision-relevant PRO measures.

Keywords

Patient-reported outcomes Comparative effectiveness Patient-centered outcomes research Psychometrics Questionnaire 

Supplementary material

11136_2012_344_MOESM1_ESM.pdf (13 kb)
Supplementary material 1 (PDF 12 kb)

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Copyright information

© Springer Science+Business Media Dordrecht 2013

Authors and Affiliations

  • Bryce B. Reeve
    • 1
    • 20
  • Kathleen W. Wyrwich
    • 2
  • Albert W. Wu
    • 3
  • Galina Velikova
    • 4
  • Caroline B. Terwee
    • 5
  • Claire F. Snyder
    • 3
  • Carolyn Schwartz
    • 6
  • Dennis A. Revicki
    • 2
  • Carol M. Moinpour
    • 7
  • Lori D. McLeod
    • 8
  • Jessica C. Lyons
    • 20
  • William R. Lenderking
    • 2
  • Pamela S. Hinds
    • 9
    • 10
  • Ron D. Hays
    • 11
  • Joanne Greenhalgh
    • 4
  • Richard Gershon
    • 12
  • David Feeny
    • 13
  • Peter M. Fayers
    • 14
    • 15
  • David Cella
    • 12
  • Michael Brundage
    • 16
  • Sara Ahmed
    • 17
  • Neil K. Aaronson
    • 18
    • 19
  • Zeeshan Butt
    • 12
  1. 1.Department of Health Policy and Management, Gillings School of Global Public HealthUniversity of North Carolina at Chapel HillChapel HillUSA
  2. 2.United BioSource CorporationBethesdaUSA
  3. 3.Johns Hopkins School of MedicineBaltimoreUSA
  4. 4.University of LeedsLeedsUK
  5. 5.VU University Medical CenterAmsterdamThe Netherlands
  6. 6.DeltaQuest Foundation, Inc.ConcordUSA
  7. 7.Fred Hutchinson Cancer Research CenterSeattleUSA
  8. 8.Research Triangle Institute Health SolutionsDurhamUSA
  9. 9.Children’s National Medical CenterWashingtonUSA
  10. 10.The George Washington University School of MedicineWashingtonUSA
  11. 11.David Geffen School of Medicine at UCLALos AngelesUSA
  12. 12.Northwestern University Feinberg School of MedicineChicagoUSA
  13. 13.University of AlbertaAlbertaCanada
  14. 14.University of AberdeenAberdeenUK
  15. 15.Norwegian University of Science and Technology (NTNU)TrondheimNorway
  16. 16.Queen’s UniversityKingstonCanada
  17. 17.McGill UniversityMontrealCanada
  18. 18.The Netherlands Cancer InstituteAmsterdamThe Netherlands
  19. 19.University of AmsterdamAmsterdamThe Netherlands
  20. 20.Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel HillChapel HillUSA

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