TY - JOUR
T1 - Health equity considerations for developing and reporting patient-reported outcomes in clinical trials
T2 - A report from the omeract equity special interest group
AU - Petkovic, Jennifer
AU - Barton, Jennifer L.
AU - Flurey, Caroline
AU - Goel, Niti
AU - Bartels, Christie M.
AU - Barnabe, Cheryl
AU - De Wit, Maarten P.T.
AU - Lyddiatt, Anne
AU - Lacaille, Diane
AU - Welch, Vivian
AU - Boonen, Annelies
AU - Shea, Beverley
AU - Christensen, Robin
AU - Maxwell, Lara J.
AU - Campbell, Willemina
AU - Jull, Janet
AU - Toupin-April, Karine
AU - Singh, Jasvinder A.
AU - Goldsmith, Charles H.
AU - Sreih, Antoine G.
AU - Pohl, Christoph
AU - Hofstetter, Catherine
AU - Beaton, Dorcas E.
AU - Buchbinder, Rachelle
AU - Guillemin, Francis
AU - Tugwell, Peter S.
N1 - Publisher Copyright:
Copyright © 2017. All rights reserved.
PY - 2017/11/1
Y1 - 2017/11/1
N2 - Objective: Despite advances integrating patient-centered outcomes into rheumatologic studies, concerns remain regarding their representativeness across diverse patient groups and how this affects equity. The Outcome Measures in Rheumatology (OMERACT) Equity Working Group aims to determine whether and how to address equity issues within the core outcome sets of domains and instruments. Methods: We surveyed current and previous OMERACT meeting attendees and members of the Campbell and Cochrane Equity Group regarding whether to address equity issues within the OMERACT Filter 2.0 Core Outcome Sets and how to assess the appropriateness of domains, instruments, and measurement properties among diverse patients. At OMERACT 2016, results of the survey and a narrative review of differential psychosocial effects of rheumatoid arthritis (i.e., on men) were presented to stimulate discussion and develop a research agenda. Results: We proposed 6 moments for which an equity lens could be added to the development, selection, or testing of patient-reported outcome measures (PROM): (1) recruitment, (2) domain selection, (3) feasibility in diverse settings, (4) instrument validity, (5) thresholds of meaning, and (6) consideration of statistical power of subgroup analyses for outcome reporting. Conclusion: There is a need to (1) conduct a systematic review to assess how equity and population characteristics have been considered in PROM development and whether these differences influence the ranking of importance of outcome domains or a patient's response to questionnaire items, and (2) conduct the same survey described above with patients representing groups experiencing health inequities.
AB - Objective: Despite advances integrating patient-centered outcomes into rheumatologic studies, concerns remain regarding their representativeness across diverse patient groups and how this affects equity. The Outcome Measures in Rheumatology (OMERACT) Equity Working Group aims to determine whether and how to address equity issues within the core outcome sets of domains and instruments. Methods: We surveyed current and previous OMERACT meeting attendees and members of the Campbell and Cochrane Equity Group regarding whether to address equity issues within the OMERACT Filter 2.0 Core Outcome Sets and how to assess the appropriateness of domains, instruments, and measurement properties among diverse patients. At OMERACT 2016, results of the survey and a narrative review of differential psychosocial effects of rheumatoid arthritis (i.e., on men) were presented to stimulate discussion and develop a research agenda. Results: We proposed 6 moments for which an equity lens could be added to the development, selection, or testing of patient-reported outcome measures (PROM): (1) recruitment, (2) domain selection, (3) feasibility in diverse settings, (4) instrument validity, (5) thresholds of meaning, and (6) consideration of statistical power of subgroup analyses for outcome reporting. Conclusion: There is a need to (1) conduct a systematic review to assess how equity and population characteristics have been considered in PROM development and whether these differences influence the ranking of importance of outcome domains or a patient's response to questionnaire items, and (2) conduct the same survey described above with patients representing groups experiencing health inequities.
KW - Arthritis
KW - Health equity
KW - Omeract
KW - Rheumatology outcome assessment
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U2 - 10.3899/jrheum.160975
DO - 10.3899/jrheum.160975
M3 - Review article
C2 - 28202740
AN - SCOPUS:85032624878
SN - 0315-162X
VL - 44
SP - 1727
EP - 1733
JO - Journal of Rheumatology
JF - Journal of Rheumatology
IS - 11
ER -