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 Legare; 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

Karine Toupin-April^*, Jennifer L. Barton, Liana Fraenkel, Alexa Meara, Linda C. Li, Peter Brooks, Maarten de Wit, Dawn Stacey, France Legare, 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 CampbellRieke 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

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

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.

Original language	English
Pages (from-to)	1409-1414
Number of pages	6
Journal	Journal of Rheumatology
Volume	46
Issue number	10
DOIs	https://doi.org/10.3899/jrheum.181071
Publication status	Published - 1 Oct 2019
Event	International Consensus Conference on Outcome Measures in Rheumatology (OMERACT) - Terrigal, Australia Duration: 1 May 2018 → …

Keywords

OMERACT
RHEUMATIC DISEASES
OUTCOMES
EULAR RECOMMENDATIONS
RHEUMATOID-ARTHRITIS
TRIALS
MANAGEMENT
AIDS

Access to Document

10.3899/jrheum.181071

Cite this

Toupin-April, K., Barton, J. L., Fraenkel, L., Meara, A., Li, L. C., Brooks, P., de Wit, M., Stacey, D., Legare, F., Shea, B., Lyddiatt, A., Hofstetter, C., Christensen, R., Voshaar, M. S., Suarez-Almazor, M. E., Boonen, A., Meade, T., March, L., Jull, J. E., ... Tugwell, P. S. (2019). OMERACT Development of a Core Domain Set of Outcomes for Shared Decision-making Interventions. Journal of Rheumatology, 46(10), 1409-1414. https://doi.org/10.3899/jrheum.181071

@article{36ef3572dc0d4f19992857232f73464c,

title = "OMERACT Development of a Core Domain Set of Outcomes for Shared Decision-making Interventions",

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, RHEUMATIC DISEASES, OUTCOMES, EULAR RECOMMENDATIONS, RHEUMATOID-ARTHRITIS, TRIALS, MANAGEMENT, AIDS",

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

note = "Funding Information: From the Children{\textquoteright}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{\textquoteright}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, Universit{\'e} 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{\textquoteright}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, Charit{\'e}, University Medicine Berlin, Berlin, Germany; Rheumatology and Rehabilitation Ain Shams University, Cairo, Egypt; King{\textquoteright}s College London, London, UK. K. Toupin-April is funded by the Children{\textquoteright}s Hospital of Eastern Ontario Research Institute and The Arthritis Society. J.L. Barton{\textquoteright}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{\textquoteright}s research reported in this publication was supported by NIAMS, part of the NIH, under Award Number AR060231-01. D. Stacey holds a University of Ottawa Research Chair in Knowledge Translation to Patients. F. L{\'e}gar{\'e} holds a Tier 1 Canada Research Chair in Shared Decision Making and Knowledge Translation. R. Christensen{\textquoteright}s research at the Parker Institute is supported by grants from The Oak Foundation (OCAY-13-309). L. March{\textquoteright}s research is supported by the Northern Sydney Local Health District. S. Hill is supported by La Trobe University. P.S. Tugwell holds a Canada Research Chair. K. Toupin-April, PhD, Associate Scientist, Children{\textquoteright}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, Funding Information: K. Toupin-April is funded by the Children?s Hospital of Eastern Ontario Research Institute and The Arthritis Society. J.L. 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 NIAMS, part of the NIH, under Award Number AR060231-01. D. Stacey holds a University of Ottawa Research Chair in Knowledge Translation to Patients. F. L?gar? holds a Tier 1 Canada Research Chair in Shared Decision Making and Knowledge Translation. R. Christensen?s research at the Parker Institute is supported by grants from The Oak Foundation (OCAY-13-309). L. March?s research is supported by the Northern Sydney Local Health District. S. Hill is supported by La Trobe University. P.S. Tugwell holds a Canada Research Chair. The authors thank members of the working group: Laure Gossec, Sarah Collins, Thomas Chong, Pamela Richards, Ailsa Bosworth, Pamela Montie, Francis Guillemin, Jennifer Petkovic, Melissa Mannion, C?cile Gaujoux-Viala, Anne Stiggelbout, and Nick Bansback. Finally, we thank the study participants. Publisher Copyright: The Journal of Rheumatology Copyright {\textcopyright} 2019. All rights reserved.; International Consensus Conference on Outcome Measures in Rheumatology (OMERACT) ; Conference date: 01-05-2018",

year = "2019",

month = oct,

day = "1",

doi = "10.3899/jrheum.181071",

language = "English",

volume = "46",

pages = "1409--1414",

journal = "Journal of Rheumatology",

issn = "0315-162X",

publisher = "Journal of Rheumatology Publishing Co. Ltd.",

number = "10",

}

Toupin-April, K, Barton, JL, Fraenkel, L, Meara, A, Li, LC, Brooks, P, de Wit, M, Stacey, D, Legare, F, Shea, B, Lyddiatt, A, Hofstetter, C, Christensen, R, Voshaar, MS, Suarez-Almazor, ME, Boonen, A, Meade, T, March, L, Jull, JE, Campbell, W, Alten, R, Karuranga, S, Morgan, EM, Kelly, A, Kaufman, J, Hill, S, Maxwell, LJ, Beaton, D, El-Miedany, Y, Mittoo, S, Bartlett, SJ, Singh, JA & Tugwell, PS 2019, 'OMERACT Development of a Core Domain Set of Outcomes for Shared Decision-making Interventions', Journal of Rheumatology, vol. 46, no. 10, pp. 1409-1414. https://doi.org/10.3899/jrheum.181071

TY - JOUR

T1 - OMERACT Development of a Core Domain Set of Outcomes for Shared Decision-making Interventions

AU - Toupin-April, Karine

AU - Barton, Jennifer L.

AU - Fraenkel, Liana

AU - Meara, Alexa

AU - Li, Linda C.

AU - Brooks, Peter

AU - de Wit, Maarten

AU - Stacey, Dawn

AU - Legare, France

AU - Shea, Beverley

AU - Lyddiatt, Anne

AU - Hofstetter, Cathie

AU - Christensen, Robin

AU - Voshaar, Marieke Scholte

AU - Suarez-Almazor, Maria E.

AU - Boonen, Annelies

AU - Meade, Tanya

AU - March, Lyn

AU - Jull, Janet Elizabeth

AU - Campbell, Willemina

AU - Alten, Rieke

AU - Karuranga, Suvi

AU - Morgan, Esi M.

AU - Kelly, Ayano

AU - Kaufman, Jessica

AU - Hill, Sophie

AU - Maxwell, Lara J.

AU - Beaton, Dorcas

AU - El-Miedany, Yasser

AU - Mittoo, Shikha

AU - Bartlett, Susan J.

AU - Singh, Jasvinder A.

AU - Tugwell, Peter S.

N1 - Funding Information: 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. K. Toupin-April is funded by the Children’s Hospital of Eastern Ontario Research Institute and The Arthritis Society. J.L. 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 NIAMS, part of the NIH, under Award Number AR060231-01. D. Stacey holds a University of Ottawa Research Chair in Knowledge Translation to Patients. F. Légaré holds a Tier 1 Canada Research Chair in Shared Decision Making and Knowledge Translation. R. Christensen’s research at the Parker Institute is supported by grants from The Oak Foundation (OCAY-13-309). L. March’s research is supported by the Northern Sydney Local Health District. S. Hill is supported by La Trobe University. P.S. Tugwell holds a Canada Research Chair. 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, Funding Information: K. Toupin-April is funded by the Children?s Hospital of Eastern Ontario Research Institute and The Arthritis Society. J.L. 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 NIAMS, part of the NIH, under Award Number AR060231-01. D. Stacey holds a University of Ottawa Research Chair in Knowledge Translation to Patients. F. L?gar? holds a Tier 1 Canada Research Chair in Shared Decision Making and Knowledge Translation. R. Christensen?s research at the Parker Institute is supported by grants from The Oak Foundation (OCAY-13-309). L. March?s research is supported by the Northern Sydney Local Health District. S. Hill is supported by La Trobe University. P.S. Tugwell holds a Canada Research Chair. The authors thank members of the working group: Laure Gossec, Sarah Collins, Thomas Chong, Pamela Richards, Ailsa Bosworth, Pamela Montie, Francis Guillemin, Jennifer Petkovic, Melissa Mannion, C?cile Gaujoux-Viala, Anne Stiggelbout, and Nick Bansback. Finally, we thank the study participants. Publisher Copyright: The Journal of Rheumatology Copyright © 2019. All rights reserved.

PY - 2019/10/1

Y1 - 2019/10/1

N2 - 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.

AB - 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.

KW - OMERACT

KW - RHEUMATIC DISEASES

KW - OUTCOMES

KW - EULAR RECOMMENDATIONS

KW - RHEUMATOID-ARTHRITIS

KW - TRIALS

KW - MANAGEMENT

KW - AIDS

U2 - 10.3899/jrheum.181071

DO - 10.3899/jrheum.181071

M3 - Article

C2 - 30709963

SN - 0315-162X

VL - 46

SP - 1409

EP - 1414

JO - Journal of Rheumatology

JF - Journal of Rheumatology

IS - 10

T2 - International Consensus Conference on Outcome Measures in Rheumatology (OMERACT)

Y2 - 1 May 2018

ER -