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- Karine Toupin-April, Jennifer Barton, Liana Fraenkel, Linda C Li, Peter Brooks, Maarten De Wit, Dawn Stacey, France Légaré, Alexa Meara, Beverley Shea, Anne Lyddiatt, Cathie Hofstetter, Laure Gossec, Robin Christensen, Marieke Scholte-Voshaar, Maria E Suarez-Almazor, Annelies Boonen, Tanya Meade, Lyn March, Christoph Pohl, Janet Elizabeth Jull, Sigogini Sivarajah, Willemina Campbell, Rieke Alten, Suvi Karuranga, Esi Morgan, Jessica Kaufman, Sophie Hill, Lara J Maxwell, Vivian Welch, Dorcas Beaton, Yasser El-Miedany, and Peter S Tugwell.
- From the Children's Hospital of Eastern Ontario Research Institute, Ottawa; Department of Pediatrics and School of Rehabilitation Sciences, University of Ottawa, and Department of Epidemiology and Community Medicine, and Department of Medicine, Faculty of Medicine, University of Ottawa; School of Nursing, University of Ottawa; Integrated Knowledge Translation Network and University of Ottawa; Ottawa Hospital Research Institute, Centre for Practice-Changing Research and University of Ottawa; Bruyère Research Institute, Bruyère Continuing Care and School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Department of Epidemiology and Community Medicine, Faculty of Medicine, and Institute of Population Health, Centre for Global Health, University of Ottawa, Ottawa; Musculoskeletal Health and Outcomes Research, Li Ka Shing Knowledge Institute, St. Michael's Hospital; Institute for Work and Health, Institute Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario; Department of Physical Therapy, University of British Columbia; Arthritis Research Centre of Canada, Vancouver, British, Columbia; Department of Family Medicine and Emergency Medicine, Université Laval, Quebec City, Montreal, Canada; VA Portland Health Care System; Oregon Health and Science University, Portland, Oregon; Department of Internal Medicine, Yale University, New Haven, Connecticut; The Ohio State University, Columbus; Division of Rheumatology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio; Department of General Internal Medicine, Section of Rheumatology and Clinical Immunology, University of Texas MD Anderson Cancer Center, Houston, Texas, USA; School of Population and Global Health, University of Melbourne; Centre for Health Communication and Participation, School of Psychology and Public Health, La Trobe University, Melbourne; Western Sydney University and Faculty of Medicine, University of Sydney; Department of Medicine, University of Sydney, Institute of Bone and Joint Research and Department of Rheumatology, Royal North Shore Hospital, Sydney, Australia; VU Medical Centre, Amsterdam; Department Psychology, Health and Technology, University of Twente, Enschede; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Caphri Research Institute, Maastricht University, Maastricht; Access to Medicine Foundation, Haarlem, the Netherlands; Sorbonne Universités, UPMC Univ Paris 06, GRC-08; Pitie-Salpétrière Hospital, AP-HP, Rheumatology Department, Paris, France; Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital, Copenhagen, Denmark; Department of Internal Medicine II Rheumatology, Clinical Immunology, Osteology, Physical Therapy and Sports Medicine, Schlosspark-Klinik, Charité, University Medicine Berlin, Berlin, Germany; Rheumatology and Rehabilitation, Ain Shams University, Cairo, Egypt; King's College London, London, UK. ktoupin@cheo.on.ca.
- J Rheumatol. 2017 Oct 1; 44 (10): 1544-1550.
ObjectiveThe aim of this Outcome Measures in Rheumatology (OMERACT) Working Group was to determine the core set of outcome domains and subdomains for measuring the effectiveness of shared decision-making (SDM) interventions in rheumatology clinical trials.MethodsFollowing the OMERACT Filter 2.0, and based on a previous literature review of SDM outcome domains and a nominal group process at OMERACT 2014, (1) an online Delphi survey was conducted to gather feedback on the draft core set and refine its domains and subdomains, and (2) a workshop was held at the OMERACT 2016 meeting to gain consensus on the draft core set.ResultsA total of 170 participants completed Round 1 of the Delphi survey, and 116 completed Round 2. Respondents came from 29 countries, with 49% being patients/caregivers. Results showed that 14 out of the 17 subdomains within the 7 domains exceeded the 70% criterion (endorsement ranged from 83% to 100% of respondents). At OMERACT 2016, only 8% of the 96 attendees were patients/caregivers. Despite initial votes of support in breakout groups, there was insufficient comfort about the conceptualization of these 7 domains and 17 subdomains for these to be endorsed at OMERACT 2016 (endorsement ranged from 17% to 68% of participants).ConclusionDifferences between the Delphi survey and consensus meeting may be explained by the manner in which the outcomes were presented, variations in participant characteristics, and the context of voting. Further efforts are needed to address the limited understanding of SDM and its outcomes among OMERACT participants.
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