Patient preferences to value health outcomes in rheumatology clinical trials: Report from the OMERACT special interest group✰

Megan Thomas; Liana Fraenkel; Annelies Boonen; Nick Bansback; Rachelle Buchbinder; Deborah Marshall; Laurie Proulx; Marieke Voshaar; Pamela Richards; Dawn P Richards; Mickael Hiligsmann; Francis Guillemin; Beverly Shea; Peter Tugwell; Glen Hazlewood

doi:10.1016/j.semarthrit.2021.05.008

Patient preferences to value health outcomes in rheumatology clinical trials: Report from the OMERACT special interest group^✰

Semin Arthritis Rheum. 2021 Aug;51(4):919-924. doi: 10.1016/j.semarthrit.2021.05.008. Epub 2021 May 24.

Authors

Affiliations

¹ Department of Community Health Sciences, University of Calgary, Calgary, Canada.
² Yale University School of Medicine, Section of Rheumatology, CT, USA.
³ Department of Internal Medicine, Maastricht University Medical Center, Care and Public Health Research Institute, Maastricht, The Netherlands.
⁴ School of Population and Public Health, Faculty of Medicine, University of British Columbia, Vancouver, Canada.
⁵ Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine, Monash University and Monash Department of Clinical Epidemiology, Cabrini Institute, Melbourne, Australia.
⁶ Department of Medicine, University of Calgary, Calgary, Canada.
⁷ Patient research partner, Canadian Arthritis Patient Alliance, Ottawa, Canada.
⁸ Patient research partner, Radboud University, Department of Pharmacy, Nijmegen, the Netherlands.
⁹ Patient research partner, University Hospitals, Bristol NHS Trust, Bristol, UK.
¹⁰ Patient research partner, Canadian Arthritis Patient Alliance, Ottawa, Canada; Patient research partner, Five02 Labs Inc., Toronto, Canada.
¹¹ Department of Health Services Research, CAPHRI Care and Public Health Research Institute, Maastricht University, Maastricht, the Netherlands.
¹² Université de Lorraine, APEMAC, Nancy, France.
¹³ Department of Medicine, University of Ottawa, Ottawa, Canada.
¹⁴ Department of Community Health Sciences, University of Calgary, Calgary, Canada; Department of Medicine, University of Calgary, Calgary, Canada. Electronic address: gshazlew@ucalgary.ca.

PMID: 34134892
DOI: 10.1016/j.semarthrit.2021.05.008

Abstract

Objective: To inform a research plan for future studies by obtaining stakeholder input on the application of preference-based methods to clinical trial design.

Methods: We conducted a virtual OMERACT session to encourage stakeholder engagement. We developed materials for the session to facilitate discussion based on identified case examples and feedback sessions.

Results: Participants prioritized incorporating patient preferences in all aspects of trial design with an emphasis on outcome selection. Participants highlighted the need for careful consideration around preference heterogeneity and equity factors.

Conclusion: Including patient preferences in trial design was considered a priority requiring further exploration to develop comprehensive guidance.

Keywords: Clinical trials; OMERACT; Patient preferences; Preference-based methods; Rheumatology; Trade-offs.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Clinical Trials as Topic
Consensus
Humans
Outcome Assessment, Health Care
Patient Preference*
Public Opinion
Rheumatology*

Grants and funding

FRN 147,822/CIHR/Canada