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

Bryce B. Reeve* (Corresponding Author), 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 & 3 others Sara Ahmed, Neil K. Aaronson, Zeeshan Butt

*Corresponding author for this work

Research output: Contribution to journalArticle

273 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)1889-1905
Number of pages17
JournalQuality of Life Research
Volume22
Issue number8
Early online date4 Jan 2013
DOIs
Publication statusPublished - Oct 2013

Fingerprint

Comparative Effectiveness Research
Patient Outcome Assessment
Quality of Life
Research
Delivery of Health Care
Patient Reported Outcome Measures
Practice Guidelines
Reproducibility of Results
Documentation
Research Personnel
Outcome Assessment (Health Care)
Guidelines

Keywords

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

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. / Reeve, Bryce B. (Corresponding Author); Wyrwich, Kathleen W.; Wu, Albert W.; Velikova, Galina; Terwee, Caroline B.; Snyder, Claire F.; Schwartz, Carolyn; Revicki, Dennis A.; Moinpour, Carol M.; McLeod, Lori D.; Lyons, Jessica C.; Lenderking, William R.; Hinds, Pamela S.; Hays, Ron D.; Greenhalgh, Joanne; Gershon, Richard; Feeny, David; Fayers, Peter M.; Cella, David; Brundage, Michael; Ahmed, Sara; Aaronson, Neil K.; Butt, Zeeshan.

In: Quality of Life Research, Vol. 22, No. 8, 10.2013, p. 1889-1905.

Research output: Contribution to journalArticle

Reeve, BB, Wyrwich, KW, Wu, AW, Velikova, G, Terwee, CB, Snyder, CF, Schwartz, C, Revicki, DA, Moinpour, CM, McLeod, LD, Lyons, JC, Lenderking, WR, Hinds, PS, Hays, RD, Greenhalgh, J, Gershon, R, Feeny, D, Fayers, PM, Cella, D, Brundage, M, Ahmed, S, Aaronson, NK & Butt, Z 2013, 'ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research', Quality of Life Research, vol. 22, no. 8, pp. 1889-1905. https://doi.org/10.1007/s11136-012-0344-y
Reeve, Bryce B. ; Wyrwich, Kathleen W. ; Wu, Albert W. ; Velikova, Galina ; Terwee, Caroline B. ; Snyder, Claire F. ; Schwartz, Carolyn ; Revicki, Dennis A. ; Moinpour, Carol M. ; McLeod, Lori D. ; Lyons, Jessica C. ; Lenderking, William R. ; Hinds, Pamela S. ; Hays, Ron D. ; Greenhalgh, Joanne ; Gershon, Richard ; Feeny, David ; Fayers, Peter M. ; Cella, David ; Brundage, Michael ; Ahmed, Sara ; Aaronson, Neil K. ; Butt, Zeeshan. / ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. In: Quality of Life Research. 2013 ; Vol. 22, No. 8. pp. 1889-1905.
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note = "Acknowledgments This study was funded by the Patient-Centered Outcomes Research Institute (PCORI-SOL-RMWG-001: PIs: Zeeshan Butt, PhD, Northwestern University; Bryce Reeve, PhD, University of North Carolina at Chapel Hill). The views expressed in this article are those of the authors and do not necessarily reflect those of PCORI.",
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AU - Reeve, Bryce B.

AU - Wyrwich, Kathleen W.

AU - Wu, Albert W.

AU - Velikova, Galina

AU - Terwee, Caroline B.

AU - Snyder, Claire F.

AU - Schwartz, Carolyn

AU - Revicki, Dennis A.

AU - Moinpour, Carol M.

AU - McLeod, Lori D.

AU - Lyons, Jessica C.

AU - Lenderking, William R.

AU - Hinds, Pamela S.

AU - Hays, Ron D.

AU - Greenhalgh, Joanne

AU - Gershon, Richard

AU - Feeny, David

AU - Fayers, Peter M.

AU - Cella, David

AU - Brundage, Michael

AU - Ahmed, Sara

AU - Aaronson, Neil K.

AU - Butt, Zeeshan

N1 - Acknowledgments This study was funded by the Patient-Centered Outcomes Research Institute (PCORI-SOL-RMWG-001: PIs: Zeeshan Butt, PhD, Northwestern University; Bryce Reeve, PhD, University of North Carolina at Chapel Hill). The views expressed in this article are those of the authors and do not necessarily reflect those of PCORI.

PY - 2013/10

Y1 - 2013/10

N2 - PurposeAn 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.MethodsWe 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.”ResultsThe 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.ConclusionThe 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.

AB - PurposeAn 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.MethodsWe 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.”ResultsThe 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.ConclusionThe 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.

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KW - Patient-centered outcomes research

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