TY - JOUR
T1 - Health Equity Considerations for Developing and Reporting Patient-reported Outcomes in Clinical Trials
T2 - International Consensus Conference on Outcome Measures in Rheumatology
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.
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 - HEALTH EQUITY
KW - OUTCOME ASSESSMENT
KW - ARTHRITIS
KW - RHEUMATOLOGY
KW - OMERACT
KW - RHEUMATOID-ARTHRITIS PATIENTS
KW - CROSS-CULTURAL ADAPTATION
KW - QUALITY-OF-LIFE
KW - ASSESSMENT QUESTIONNAIRE
KW - PERSPECTIVE
KW - VALIDITY
KW - INSTRUMENTS
KW - ASSESSMENTS
KW - VALIDATION
KW - DEPRESSION
U2 - 10.3899/jrheum.160975
DO - 10.3899/jrheum.160975
M3 - Article
SN - 0315-162X
VL - 44
SP - 1727
EP - 1733
JO - Journal of Rheumatology
JF - Journal of Rheumatology
IS - 11
Y2 - 1 May 2016
ER -