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Abstract Number: 1261

Development a Core Domain Set to Assess Shared Decision Making Interventions in Rheumatology: An OMERACT White Paper to Facilitate Endorsement

Karine Toupin-April1, Jennifer Barton2,3, Liana Fraenkel4, Alexa Meara5, Linda Li6, Peter Brooks7, Maarten de Wit8, Dawn Stacey9,10, France Légaré11, Beverly Shea9,12,13, Anne Lyddiatt14, Catherine Hofstetter15, Robin Christensen16, Marieke Scholte-Voshaar17,18, Maria Suarez-Almazor19, Annelies Boonen20, Tanya Meade21,22, Lyn March22, Janet Elizabeth Jull9, Willemina Campbell23, Rieke Alten24, Suvi Karuranga25, Esi Morgan26, Jessica Kaufmann27, Sophie Hill27, Lara J. Maxwell9,10, Dorcas Beaton28, Yasser El-Miedany29, Shikha Mittoo30, Susan J. Bartlett31, Jasvinder A. Singh32 and Peter Tugwell33, 1Children’s Hospital of Eastern Ontario Research Institute, Ottawa, ON, Canada, 2VA Portland Health Care System, Portland, OR, 3Oregon Health & Science University, Portland, OR, 4Yale University School of Medicine, New Haven, CT, 5Internal Medicine/Rheumatology, The Ohio State University Wexner Medical Center, Columbus, OH, 6Arthritis Research Canada, Richmond, BC, Canada, 7The University of Melbourne, Victoria, Australia, 8EULAR standing committee of PARE, Zurich, Switzerland, 9University of Ottawa, Ottawa, ON, Canada, 10The Ottawa Hospital Research Institute, Ottawa, ON, Canada, 11Université Laval, Montreal, QC, Canada, 12Bruyere Research Institute, Ottawa, ON, Canada, 13School of Epidemiology, Public Health, and Preventive Medicine, Faculty of Medicine, University of Ottawa, and Ottawa Hospital Research Institute, Clinical Epidemiology Program, Ottawa, ON, Canada, 14Musculoskeletal Group, Cochrane Collaboration, Hamilton, ON, Canada, 15OMERACT patient research partner group, Ottawa, ON, Canada, 16Bispebjerg and Frederiksberg Hospital, Copenhagen, Denmark, 17University of Twente, Enschede, ON, Netherlands, 18OMERACT patient research partner group, Enschede, Netherlands, 19Section of Rheumatology and Clinical Immunology, Department of General Internal Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, 20Department of Rheumatology, Maastricht University Medical Center, Maastricht, The Netherlands, Maastricht, Netherlands, 21Western Sydney University, New South Wales, Australia, 22University of Sydney, New South Wales, Australia, 23OMERACT patient research partner group, Toronto, ON, Canada, 24University Medicine Berlin, Berlin, Germany, 25Access to Medicine Foundation, Haarlem, Netherlands, 26University of Cincinnati, Cincinnati, OH, 27La Trobe University, Victoria, Australia, 28Mobility Program Clinical Research Unit, St Michael's Hospital, Toronto, ON, Canada, 29Ain Shams University, Cairo, Egypt, 30Involved medicine, Toronto, ON, Canada, 31Rheumatology, Johns Hopkins University School of Medicine, Baltimore, MD, 32Rheumatology, University of Alabama at Birmingham, Birmingham, AL, 33Center For Global Health, Institute of Population Hlth, Ottawa, ON, Canada

Meeting: 2018 ACR/ARHP Annual Meeting

Keywords: Effective, Evaluation, Outcome measures, outcomes and shared dicision making

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Session Information

Date: Monday, October 22, 2018

Title: Measures and Measurement of Healthcare Quality Poster II

Session Type: ACR Poster Session B

Session Time: 9:00AM-11:00AM

Background/Purpose:

Shared decision making (SDM) improves decisional outcomes and patient-physician communication and holds great potential for improving the management of various rheumatology conditions. However, the lack of consensus on how to measure the effectiveness of SDM in clinical trials creates a barrier to further evaluation of SDM interventions. Members of the SDM Outcome Measures in Rheumatology (OMERACT) working group (WG) sought to determine a core domain set, distinguishing process and outcome domains, for measuring the effectiveness of SDM interventions in rheumatology clinical trials. The WG followed the OMERACT Filter 2.0 and developed a draft core set of SDM process and outcome domains based on a previous systematic review and a nominal group process conducted at the OMERACT 2014 meeting. In 2016, an international electronic Delphi survey was conducted among patients, caregivers, clinicians and researchers to refine the domains of the OMERACT draft core set. A workshop was held at the OMERACT 2016 meeting in which no agreement was reached on the core set.

Methods: To help address reasons for which consensus was not achieved, a white paper was drafted. The aim of the white paper was to clarify the background and development process of the draft SDM core domain set. Key stakeholders playing a leadership role within OMERACT were identified and contacted to participate in semi-structured interviews by telephone or virtually to determine how to modify the core set and inform the white paper to facilitate its endorsement.

Results: A preliminary sample of nine OMERACT members from North America and Europe participated in interviews, including eight scientists/clinicians and one patient. All participants felt that domains pertaining to the process and the outcomes of SDM are relevant but should be clearly delineated. Some mentioned that, since OMERACT pertains more to outcomes than process, consensus-building efforts should focus on outcome domains rather than process domains. Most felt that all SDM outcome domains were relevant, but suggested minor changes in language and the addition of definitions to clarify domains. Outcomes include: knowledge of the options and their features; accurate risk perceptions; match between values/preferences and chosen option; confidence in decision making; satisfaction with decision making process; and use of the chosen option. The white paper was felt to be helpful in understanding the core set.

Conclusion: Preliminary evidence from the interviews demonstrates a need to focus efforts on clarifying and gaining consensus on the outcome domains rather than on the process domains of SDM interventions. Further interviews will be conducted with all key stakeholders and this feedback will be used to improve the white paper and core set. International consensus-building efforts will also take place to ensure all key stakeholders endorse the core set of outcome domains used to measure in trials of SDM interventions.


Disclosure: K. Toupin-April, None; J. Barton, None; L. Fraenkel, None; A. Meara, None; L. Li, None; P. Brooks, None; M. de Wit, None; D. Stacey, None; F. Légaré, None; B. Shea, None; A. Lyddiatt, None; C. Hofstetter, None; R. Christensen, None; M. Scholte-Voshaar, None; M. Suarez-Almazor, Pfizer, Inc,, 5,Eli Lilly and Co., 5; A. Boonen, Eli Lilly and Co., 5; T. Meade, None; L. March, None; J. E. Jull, None; W. Campbell, None; R. Alten, Gilead Science Inc, Galapagos, 2; S. Karuranga, None; E. Morgan, None; J. Kaufmann, None; S. Hill, None; L. J. Maxwell, None; D. Beaton, None; Y. El-Miedany, None; S. Mittoo, None; S. J. Bartlett, UCB, Inc., 5,Eli Lilly and Co., 5,Pfizer, Inc., 5; J. A. Singh, Takeda, Savient, 2,Savient, Takeda, Regeneron, Merz, Iroko, Bioiberica, Crealta/Horizon and Allergan pharmaceuticals, WebMD, UBM LLC, Medscape , Fidia pharmaceuticals and the American College of Rheumatology, 5; P. Tugwell, None.

To cite this abstract in AMA style:

Toupin-April K, Barton J, Fraenkel L, Meara A, Li L, Brooks P, de Wit M, Stacey D, Légaré F, Shea B, Lyddiatt A, Hofstetter C, Christensen R, Scholte-Voshaar M, Suarez-Almazor M, Boonen A, Meade T, March L, Jull JE, Campbell W, Alten R, Karuranga S, Morgan E, Kaufmann J, Hill S, Maxwell LJ, Beaton D, El-Miedany Y, Mittoo S, Bartlett SJ, Singh JA, Tugwell P. Development a Core Domain Set to Assess Shared Decision Making Interventions in Rheumatology: An OMERACT White Paper to Facilitate Endorsement [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 9). https://acrabstracts.org/abstract/development-a-core-domain-set-to-assess-shared-decision-making-interventions-in-rheumatology-an-omeract-white-paper-to-facilitate-endorsement/. Accessed .
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