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Research ArticleArticle

Toward the Development of a Core Set of Outcome Domains to Assess Shared Decision-making Interventions in Rheumatology: Results from an OMERACT Delphi Survey and Consensus Meeting

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
The Journal of Rheumatology August 2017, jrheum.161241; DOI: https://doi.org/10.3899/jrheum.161241
Karine Toupin-April
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. K. Toupin-April is funded by the Children’s Hospital of Eastern Ontario Research Institute and The Arthritis Society. J. Barton’s research reported in this publication was supported by the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), part of the National Institutes of Health (NIH), under award number K23-AR-064372. L. Fraenkel’s research reported in this publication was supported by the NIAMS, part of the NIH, under award number AR060231-01.R. Christensen’s research at the Parker Institute is supported by grants from The Oak Foundation. L. March’s research is supported by the Northern Sydney Local Health District. J. Kaufman and S. Hill receive funding from the Research Council of Norway (COMMVAC 2 project grant number 220873). S. Hill is also supported by a Funding and Service Agreement, Department of Health and Human Services, Victoria, and La Trobe University. 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. Barton, MD, VA Portland Health Care System, and Associate Professor, Oregon Health and Science University; L. Fraenkel, MD, Professor of Medicine, Department of Internal Medicine, Yale University; L.C. Li, PT, PhD, Professor, Department of Physical Therapy, University of British Columbia, and Senior Scientist, Arthritis Research Centre of Canada; P. Brooks, MD, Professor, School of Population and Global Health, University of Melbourne; M. De Wit, PhD, Patient Research Partner, VU Medical Centre; 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; A. Meara, MD, The Ohio State University; B. Shea, PhD, Clinical Scientist, Bruyère Research Institute, and Senior Methodologist, Ottawa Health Research Institute, and Adjunct Professor, Department of Epidemiology and Community Medicine, University of Ottawa; A. Lyddiatt, Patient Research Partner; C. Hofstetter, Patient Research Partner; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, GRC-08, and Pitie-Salpétrière Hospital, AP-HP, Rheumatology Department; R. Christensen, PhD, Professor, Senior Biostatistician, Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital; M. Scholte-Voshaar, MSc, Patient Research Partner, Department 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, Professor, Department of Medicine, University of Sydney, Institute of Bone and Joint Research and Department of Rheumatology, Royal North Shore Hospital; C. Pohl, MD, Rheumatologist, Department of Internal Medicine II Rheumatology, Clinical Immunology, Osteology, Physical Therapy and Sports Medicine, Schlosspark-Klinik, Charité, University Medicine Berlin; J.E. Jull, OT, PhD, Postdoctoral Fellow, Integrated Knowledge Translation Network and University of Ottawa; S. Sivarajah, BSc, Research Assistant, Children’s Hospital of Eastern Ontario Research Institute; W. Campbell, LLB, Patient Research Partner; 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, MPH, Researcher, Access to Medicine Foundation; E. Morgan, MD, Associate Professor, Division of Rheumatology, Cincinnati Children’s Hospital Medical Center; J. Kaufman, BSc, Centre for Health Communication and Participation, School of Psychology and Public Health, La Trobe University; S. Hill, PhD, 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; V. Welch, PhD, Scientist, Bruyère Research Institute, Bruyère Continuing Care and School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa; D. Beaton, PhD, Musculoskeletal Health and Outcomes Research, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, and Senior Scientist, Institute for Work and Health, Associate Professor, Institute 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; P.S. Tugwell, MD, Professor, Department of Medicine, Faculty of Medicine, University of Ottawa, and Senior Scientist, 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. Address correspondence to Dr. K. Toupin-April, Children’s Hospital of Eastern Ontario Research Institute, 401 Smyth Road, Ottawa, Ontario K1H 8L1, Canada. E-mail: ktoupin@cheo.on.ca. Accepted for publication June 3, 2017.
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Jennifer Barton
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Liana Fraenkel
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Linda C. Li
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Peter Brooks
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France Légaré
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Alexa Meara
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Maria E. Suarez-Almazor
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Article Information

jrheum.161241
DOI 
https://doi.org/10.3899/jrheum.161241
PubMed 
28765239

Published By 
The Journal of Rheumatology
Print ISSN 
0315-162X
Online ISSN 
1499-2752
History 
  • Published online August 1, 2017.

Article Versions

  • You are currently viewing a Latest version of this article (August 1, 2017 - 04:03).
  • View the most recent version of this article
Copyright & Usage 
© 2017 The Journal of Rheumatology

Author Information

  1. Karine Toupin-April,
  2. Jennifer Barton,
  3. Liana Fraenkel,
  4. Linda C. Li,
  5. Peter Brooks,
  6. Maarten De Wit,
  7. Dawn Stacey,
  8. France Légaré,
  9. Alexa Meara,
  10. Beverley Shea,
  11. Anne Lyddiatt,
  12. Cathie Hofstetter,
  13. Laure Gossec,
  14. Robin Christensen,
  15. Marieke Scholte-Voshaar,
  16. Maria E. Suarez-Almazor,
  17. Annelies Boonen,
  18. Tanya Meade,
  19. Lyn March,
  20. Christoph Pohl,
  21. Janet Elizabeth Jull,
  22. Sigogini Sivarajah,
  23. Willemina Campbell,
  24. Rieke Alten,
  25. Suvi Karuranga,
  26. Esi Morgan,
  27. Jessica Kaufman,
  28. Sophie Hill,
  29. Lara J. Maxwell,
  30. Vivian Welch,
  31. Dorcas Beaton,
  32. Yasser El-Miedany and
  33. Peter S. Tugwell
  1. 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.
    K. Toupin-April is funded by the Children’s Hospital of Eastern Ontario Research Institute and The Arthritis Society. J. Barton’s research reported in this publication was supported by the US National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), part of the National Institutes of Health (NIH), under award number K23-AR-064372.
    L. Fraenkel’s research reported in this publication was supported by the NIAMS, part of the NIH, under award number AR060231-01.
    R. Christensen’s research at the Parker Institute is supported by grants from The Oak Foundation. L. March’s research is supported by the Northern Sydney Local Health District. J. Kaufman and S. Hill receive funding from the Research Council of Norway (COMMVAC 2 project grant number 220873). S. Hill is also supported by a Funding and Service Agreement, Department of Health and Human Services, Victoria, and La Trobe University.
    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. Barton, MD, VA Portland Health Care System, and Associate Professor, Oregon Health and Science University; L. Fraenkel, MD, Professor of Medicine, Department of Internal Medicine, Yale University; L.C. Li, PT, PhD, Professor, Department of Physical Therapy, University of British Columbia, and Senior Scientist, Arthritis Research Centre of Canada; P. Brooks, MD, Professor, School of Population and Global Health, University of Melbourne; M. De Wit, PhD, Patient Research Partner, VU Medical Centre; 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; A. Meara, MD, The Ohio State University; B. Shea, PhD, Clinical Scientist, Bruyère Research Institute, and Senior Methodologist, Ottawa Health Research Institute, and Adjunct Professor, Department of Epidemiology and Community Medicine, University of Ottawa; A. Lyddiatt, Patient Research Partner; C. Hofstetter, Patient Research Partner; L. Gossec, MD, PhD, Sorbonne Universités, UPMC Univ Paris 06, GRC-08, and Pitie-Salpétrière Hospital, AP-HP, Rheumatology Department; R. Christensen, PhD, Professor, Senior Biostatistician, Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital; M. Scholte-Voshaar, MSc, Patient Research Partner, Department 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, Professor, Department of Medicine, University of Sydney, Institute of Bone and Joint Research and Department of Rheumatology, Royal North Shore Hospital; C. Pohl, MD, Rheumatologist, Department of Internal Medicine II Rheumatology, Clinical Immunology, Osteology, Physical Therapy and Sports Medicine, Schlosspark-Klinik, Charité, University Medicine Berlin; J.E. Jull, OT, PhD, Postdoctoral Fellow, Integrated Knowledge Translation Network and University of Ottawa; S. Sivarajah, BSc, Research Assistant, Children’s Hospital of Eastern Ontario Research Institute; W. Campbell, LLB, Patient Research Partner; 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, MPH, Researcher, Access to Medicine Foundation; E. Morgan, MD, Associate Professor, Division of Rheumatology, Cincinnati Children’s Hospital Medical Center; J. Kaufman, BSc, Centre for Health Communication and Participation, School of Psychology and Public Health, La Trobe University; S. Hill, PhD, 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; V. Welch, PhD, Scientist, Bruyère Research Institute, Bruyère Continuing Care and School of Epidemiology, Public Health and Preventive Medicine, University of Ottawa; D. Beaton, PhD, Musculoskeletal Health and Outcomes Research, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, and Senior Scientist, Institute for Work and Health, Associate Professor, Institute 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; P.S. Tugwell, MD, Professor, Department of Medicine, Faculty of Medicine, University of Ottawa, and Senior Scientist, 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.
    Address correspondence to Dr. K. Toupin-April, Children’s Hospital of Eastern Ontario Research Institute, 401 Smyth Road, Ottawa, Ontario K1H 8L1, Canada. E-mail: ktoupin@cheo.on.ca.
    Accepted for publication June 3, 2017.

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Toward the Development of a Core Set of Outcome Domains to Assess Shared Decision-making Interventions in Rheumatology: Results from an OMERACT Delphi Survey and Consensus Meeting
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, Peter S. Tugwell
The Journal of Rheumatology Aug 2017, jrheum.161241; DOI: 10.3899/jrheum.161241

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Toward the Development of a Core Set of Outcome Domains to Assess Shared Decision-making Interventions in Rheumatology: Results from an OMERACT Delphi Survey and Consensus Meeting
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, Peter S. Tugwell
The Journal of Rheumatology Aug 2017, jrheum.161241; DOI: 10.3899/jrheum.161241
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The Journal of Rheumatology
The content of this site is intended for health care professionals.
Copyright © 2022 by The Journal of Rheumatology Publishing Co. Ltd.
Print ISSN: 0315-162X; Online ISSN: 1499-2752
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