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01-10-2013

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

Auteurs: 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

Gepubliceerd in: Quality of Life Research | Uitgave 8/2013

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.

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Titel: ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research
Auteurs: 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
Publicatiedatum: 01-10-2013
Uitgeverij: Springer Netherlands
Gepubliceerd in: Quality of Life Research / Uitgave 8/2013
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-012-0344-y

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