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 BrundageSara Ahmed, Neil K. Aaronson, Zeeshan Butt

*Corresponding author for this work

Research output: Contribution to journalArticle

341 Scopus citations

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 (US)
Pages (from-to)1889-1905
Number of pages17
JournalQuality of Life Research
Volume22
Issue number8
DOIs
StatePublished - Oct 2013

Keywords

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

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

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    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