OMERACT Development of a Core Domain Set of Outcomes for Shared Decision-making Interventions

Karine Toupin-April; Jennifer L Barton; Liana Fraenkel; Alexa Meara; Linda C Li; Peter Brooks; Maarten de Wit; Dawn Stacey; France Légaré; Beverley Shea; Anne Lyddiatt; Cathie Hofstetter; Robin Christensen; Marieke Scholte Voshaar; Maria E Suarez-Almazor; Annelies Boonen; Tanya Meade; Lyn March; Janet Elizabeth Jull; Willemina Campbell; Rieke Alten; Suvi Karuranga; Esi M Morgan; Ayano Kelly; Jessica Kaufman; Sophie Hill; Lara J Maxwell; Dorcas Beaton; Yasser El-Miedany; Shikha Mittoo; Susan J Bartlett; Jasvinder A Singh; Peter S Tugwell

doi:10.3899/jrheum.181071

OMERACT Development of a Core Domain Set of Outcomes for Shared Decision-making Interventions

J Rheumatol. 2019 Oct;46(10):1409-1414. doi: 10.3899/jrheum.181071. Epub 2019 Feb 1.

Authors

Karine Toupin-April^{1

2}, Jennifer L Barton^{3

4}, Liana Fraenkel^{3

4}, Alexa Meara^{3

4}, Linda C Li^{3

4}, Peter Brooks^{3

4}, Maarten de Wit^{3

4}, Dawn Stacey^{3

4}, France Légaré^{3

4}, Beverley Shea^{3

4}, Anne Lyddiatt^{3

4}, Cathie Hofstetter^{3

4}, Robin Christensen^{3

4}, Marieke Scholte Voshaar^{3

4}, Maria E Suarez-Almazor^{3

4}, Annelies Boonen^{3

4}, Tanya Meade^{3

4}, Lyn March^{3

4}, Janet Elizabeth Jull^{3

4}, Willemina Campbell^{3

4}, Rieke Alten^{3

4}, Suvi Karuranga^{3

4}, Esi M Morgan^{3

4}, Ayano Kelly^{3

4}, Jessica Kaufman^{3

4}, Sophie Hill^{3

4}, Lara J Maxwell^{3

4}, Dorcas Beaton^{3

4}, Yasser El-Miedany^{3

4}, Shikha Mittoo^{3

4}, Susan J Bartlett^{3

4}, Jasvinder A Singh^{3

4}, Peter S Tugwell^{3

4}

Affiliations

¹ From the Children's Hospital of Eastern Ontario Research Institute; Department of Pediatrics and School of Rehabilitation Sciences, University of Ottawa; School of Nursing, University of Ottawa; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Ottawa Hospital Research Institute, Centre for Practice-Changing Research; Clinical Epidemiology Program, Ottawa Hospital Research Institute; School of Rehabilitation Therapy, Queen's University, Kingston; Toronto Western Hospital, University Health Network; Institute for Work & Health; Institute of Health Policy, Management and Evaluation, University of Toronto; Involved Medicine, University of Toronto, Toronto, Ontario; Department of Physical Therapy, University of British Columbia; Arthritis Research Canada, Vancouver, British Columbia; Department of Family Medicine and Emergency Medicine, Université Laval, Quebec City; McGill University, Montreal, Quebec, Canada; Portland Health Care System; Oregon Health & 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; University of Alabama at Birmingham, Birmingham, Alabama, 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; Faculty of Medicine, University of Sydney; Department of Medicine, University of Sydney, Institute of Bone and Joint Research; Department of Rheumatology, Royal North Shore Hospital, Sydney; Canberra Rheumatology, Department of Rheumatology, Canberra Hospital; College of Health and Medicine, Australian National University, Canberra, Australia; Amsterdam University Medical Centre, Department of Medical Humanities, Amsterdam; Department of Psychology, Health and Technology, University of Twente, Enschede; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center; Caphri Research Institute, Maastricht University, Maastricht; Access to Medicine Foundation, Haarlem, the Netherlands; Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital, Copenhagen; Department of Rheumatology, Odense University Hospital, Odense, Denmark; Department of Internal Medicine II, Rheumatology Research Center, 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.
² K. Toupin-April, PhD, Associate Scientist, Children's Hospital of Eastern Ontario Research Institute, and Assistant Professor, Department of Pediatrics and School of Rehabilitation Sciences, University of Ottawa; J.L. Barton, MD, VA Portland Health Care System, and Associate Professor, Oregon Health & Science University; L. Fraenkel, MD, Professor of Medicine, Department of Internal Medicine, Yale University; A. Meara, MD, The Ohio State University; L.C. Li, PT, PhD, Professor, Department of Physical Therapy, University of British Columbia, and Senior Scientist, Arthritis Research Canada; P. Brooks, MD, Professor, School of Population and Global Health, University of Melbourne; M. de Wit, PhD, Patient Research Partner, Amsterdam University Medical Centre, Department of Medical Humanities; D. Stacey, RN, PhD, Full Professor, School of Nursing, University of Ottawa, and Senior Scientist, The Ottawa Hospital Research Institute; F. Légaré, MD, PhD, Full Professor, Department of Family Medicine and Emergency Medicine, Université Laval; B. Shea, PhD, Clinical Scientist, Bruyère Research Institute, Senior Methodologist, Ottawa Hospital Research Institute, and Adjunct Professor, Department of Epidemiology and Community Medicine, University of Ottawa; A. Lyddiatt, Patient Research Partner; C. Hofstetter, Patient Research Partner; R. Christensen, MSc, PhD, Professor, Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital, and Department of Rheumatology, Odense University Hospital; M. Scholte-Voshaar, MSc, Patient Research Partner, Department of Psychology, Health and Technology, University of Twente; M.E. Suarez-Almazor, MD, PhD, Professor, Department of General Internal Medicine, Section of Rheumatology and Clinical Immunology, University of Texas MD Anderson Cancer Center; A. Boonen, MD, PhD, Professor of Rheumatology, Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center, and Caphri Research Institute, Maastricht University; T. Meade, PhD, Professor, Western Sydney University, and Faculty of Medicine, University of Sydney; L. March, MD, PhD, Professor, Department of Medicine, University of Sydney, Institute of Bone and Joint Research and Department of Rheumatology, Royal North Shore Hospital; J.E. Jull, OT, PhD, Assistant Professor, School of Rehabilitation Therapy, Queen's University; W. Campbell, LLB, Patient Research Partner, Toronto Western Hospital, University Health Network; R. Alten, MD, PhD, Professor of Medicine, Head of Department of Internal Medicine II, Director of Rheumatology Research Center, Rheumatology, Clinical Immunology, Osteology, Physical Therapy and Sports Medicine, Schlosspark-Klinik, Charité, University Medicine Berlin; S. Karuranga, Researcher, Access to Medicine Foundation; E.M. Morgan, MD, Associate Professor, Division of Rheumatology, Cincinnati Children's Hospital Medical Center; A. Kelly, MD, PhD Student, Canberra Rheumatology, Department of Rheumatology, Canberra Hospital, and College of Health and Medicine, Australian National University; J. Kaufman, Centre for Health Communication and Participation, School of Psychology and Public Health, La Trobe University; S. Hill, Centre for Health Communication and Participation, School of Psychology and Public Health, La Trobe University; L.J. Maxwell, PhD, Ottawa Hospital Research Institute, Centre for Practice-Changing Research and University of Ottawa; D. Beaton, PhD, Senior Scientist, Institute for Work & Health, Associate Professor, Institute of Health Policy, Management and Evaluation, University of Toronto; Y. El-Miedany, MD, Professor, Rheumatology and Rehabilitation Ain Shams University, and Honorary Senior Clinical Lecturer, King's College London; S. Mittoo, MD, Rheumatologist, Involved Medicine and Adjunct Professor, University of Toronto; S.J. Bartlett, Professor, McGill University; J.A. Singh, MD, Professor, University of Alabama at Birmingham; P.S. Tugwell, MD, Professor, Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, and Senior Scientist, Clinical Epidemiology Program, Ottawa Hospital Research Institute. ktoupin@cheo.on.ca.
³ From the Children's Hospital of Eastern Ontario Research Institute; Department of Pediatrics and School of Rehabilitation Sciences, University of Ottawa; School of Nursing, University of Ottawa; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Ottawa Hospital Research Institute, Centre for Practice-Changing Research; Clinical Epidemiology Program, Ottawa Hospital Research Institute; School of Rehabilitation Therapy, Queen's University, Kingston; Toronto Western Hospital, University Health Network; Institute for Work & Health; Institute of Health Policy, Management and Evaluation, University of Toronto; Involved Medicine, University of Toronto, Toronto, Ontario; Department of Physical Therapy, University of British Columbia; Arthritis Research Canada, Vancouver, British Columbia; Department of Family Medicine and Emergency Medicine, Université Laval, Quebec City; McGill University, Montreal, Quebec, Canada; Portland Health Care System; Oregon Health & 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; University of Alabama at Birmingham, Birmingham, Alabama, 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; Faculty of Medicine, University of Sydney; Department of Medicine, University of Sydney, Institute of Bone and Joint Research; Department of Rheumatology, Royal North Shore Hospital, Sydney; Canberra Rheumatology, Department of Rheumatology, Canberra Hospital; College of Health and Medicine, Australian National University, Canberra, Australia; Amsterdam University Medical Centre, Department of Medical Humanities, Amsterdam; Department of Psychology, Health and Technology, University of Twente, Enschede; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center; Caphri Research Institute, Maastricht University, Maastricht; Access to Medicine Foundation, Haarlem, the Netherlands; Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital, Copenhagen; Department of Rheumatology, Odense University Hospital, Odense, Denmark; Department of Internal Medicine II, Rheumatology Research Center, 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.
⁴ K. Toupin-April, PhD, Associate Scientist, Children's Hospital of Eastern Ontario Research Institute, and Assistant Professor, Department of Pediatrics and School of Rehabilitation Sciences, University of Ottawa; J.L. Barton, MD, VA Portland Health Care System, and Associate Professor, Oregon Health & Science University; L. Fraenkel, MD, Professor of Medicine, Department of Internal Medicine, Yale University; A. Meara, MD, The Ohio State University; L.C. Li, PT, PhD, Professor, Department of Physical Therapy, University of British Columbia, and Senior Scientist, Arthritis Research Canada; P. Brooks, MD, Professor, School of Population and Global Health, University of Melbourne; M. de Wit, PhD, Patient Research Partner, Amsterdam University Medical Centre, Department of Medical Humanities; D. Stacey, RN, PhD, Full Professor, School of Nursing, University of Ottawa, and Senior Scientist, The Ottawa Hospital Research Institute; F. Légaré, MD, PhD, Full Professor, Department of Family Medicine and Emergency Medicine, Université Laval; B. Shea, PhD, Clinical Scientist, Bruyère Research Institute, Senior Methodologist, Ottawa Hospital Research Institute, and Adjunct Professor, Department of Epidemiology and Community Medicine, University of Ottawa; A. Lyddiatt, Patient Research Partner; C. Hofstetter, Patient Research Partner; R. Christensen, MSc, PhD, Professor, Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital, and Department of Rheumatology, Odense University Hospital; M. Scholte-Voshaar, MSc, Patient Research Partner, Department of Psychology, Health and Technology, University of Twente; M.E. Suarez-Almazor, MD, PhD, Professor, Department of General Internal Medicine, Section of Rheumatology and Clinical Immunology, University of Texas MD Anderson Cancer Center; A. Boonen, MD, PhD, Professor of Rheumatology, Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center, and Caphri Research Institute, Maastricht University; T. Meade, PhD, Professor, Western Sydney University, and Faculty of Medicine, University of Sydney; L. March, MD, PhD, Professor, Department of Medicine, University of Sydney, Institute of Bone and Joint Research and Department of Rheumatology, Royal North Shore Hospital; J.E. Jull, OT, PhD, Assistant Professor, School of Rehabilitation Therapy, Queen's University; W. Campbell, LLB, Patient Research Partner, Toronto Western Hospital, University Health Network; R. Alten, MD, PhD, Professor of Medicine, Head of Department of Internal Medicine II, Director of Rheumatology Research Center, Rheumatology, Clinical Immunology, Osteology, Physical Therapy and Sports Medicine, Schlosspark-Klinik, Charité, University Medicine Berlin; S. Karuranga, Researcher, Access to Medicine Foundation; E.M. Morgan, MD, Associate Professor, Division of Rheumatology, Cincinnati Children's Hospital Medical Center; A. Kelly, MD, PhD Student, Canberra Rheumatology, Department of Rheumatology, Canberra Hospital, and College of Health and Medicine, Australian National University; J. Kaufman, Centre for Health Communication and Participation, School of Psychology and Public Health, La Trobe University; S. Hill, Centre for Health Communication and Participation, School of Psychology and Public Health, La Trobe University; L.J. Maxwell, PhD, Ottawa Hospital Research Institute, Centre for Practice-Changing Research and University of Ottawa; D. Beaton, PhD, Senior Scientist, Institute for Work & Health, Associate Professor, Institute of Health Policy, Management and Evaluation, University of Toronto; Y. El-Miedany, MD, Professor, Rheumatology and Rehabilitation Ain Shams University, and Honorary Senior Clinical Lecturer, King's College London; S. Mittoo, MD, Rheumatologist, Involved Medicine and Adjunct Professor, University of Toronto; S.J. Bartlett, Professor, McGill University; J.A. Singh, MD, Professor, University of Alabama at Birmingham; P.S. Tugwell, MD, Professor, Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, and Senior Scientist, Clinical Epidemiology Program, Ottawa Hospital Research Institute.

Abstract

Objective: The Outcome Measures in Rheumatology (OMERACT) Shared Decision Making (SDM) Working Group aims to determine the core outcome domain set for measuring the effectiveness of SDM interventions in rheumatology trials.

Methods: A white paper was developed to clarify the draft core domain set. It was then used to prepare for interviews to investigate reasons for lack of consensus on it and to suggest further improvements.

Results: OMERACT scientists/clinicians (n = 13) and patients (n = 10) suggested limiting the core domain set to outcome domains, removing process domains, and clarifying remaining domains.

Conclusion: A revised core domain set will undergo further consensus-building.

Keywords: OMERACT; OUTCOMES; RHEUMATIC DISEASES.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

MeSH terms

Consensus
Decision Making, Shared*
Delphi Technique
Humans
Outcome Assessment, Health Care / methods*
Rheumatic Diseases*
Rheumatology / methods*
Stakeholder Participation

Abstract

Publication types

MeSH terms

Grants and funding