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

doi:10.1007/s11136-012-0344-y

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 BrundageSara Ahmed, Neil K. Aaronson, Zeeshan Butt

^*Corresponding author for this work

Applied Health Sciences

Research output: Contribution to journal › Article › peer-review

584 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 language	English
Pages (from-to)	1889-1905
Number of pages	17
Journal	Quality of Life Research
Volume	22
Issue number	8
Early online date	4 Jan 2013
DOIs	https://doi.org/10.1007/s11136-012-0344-y
Publication status	Published - Oct 2013

Bibliographical 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.

Keywords

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

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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Cite this

Reeve, B. B., Wyrwich, K. W., Wu, A. W., Velikova, G., Terwee, C. B., Snyder, C. F., Schwartz, C., Revicki, D. A., Moinpour, C. M., McLeod, L. D., Lyons, J. C., Lenderking, W. R., Hinds, P. S., Hays, R. D., Greenhalgh, J., Gershon, R., Feeny, D., Fayers, P. M., Cella, D., ... 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, 22(8), 1889-1905. https://doi.org/10.1007/s11136-012-0344-y

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

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

abstract = "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{\textquoteright}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.",

keywords = "Comparative effectiveness, Patient-centered outcomes research, Patient-reported outcomes, Psychometrics, Questionnaire",

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

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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doi = "10.1007/s11136-012-0344-y",

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T1 - ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research

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

KW - Patient-reported outcomes

KW - Psychometrics

KW - Questionnaire

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

Abstract

Bibliographical note

Keywords

UN SDGs

Access to Document

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