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 PohlJanet 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

Research output: Contribution to journalArticle

9 Citations (Scopus)

Abstract

Objective. The 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.Methods. Following 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. Results.A 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). Conclusion. Differences 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.

Original languageEnglish (US)
Pages (from-to)1544-1550
Number of pages7
JournalJournal of Rheumatology
Volume44
Issue number10
DOIs
StatePublished - Oct 1 2017

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Rheumatology
Consensus
Decision Making
Caregivers
Group Processes
Politics
Outcome Assessment (Health Care)
Surveys and Questionnaires
Clinical Trials
Education

Keywords

  • Omeract
  • Rheumatology
  • Shared decision making

ASJC Scopus subject areas

  • Rheumatology
  • Immunology and Allergy
  • Immunology

Cite this

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. / Toupin-April, Karine; Barton, Jennifer; Fraenkel, Liana; Li, Linda C.; Brooks, Peter; De Wit, Maarten; Stacey, Dawn; Légaré, France; Meara, Alexa; Shea, Beverley; Lyddiatt, Anne; Hofstetter, Cathie; Gossec, Laure; Christensen, Robin; Scholte-Voshaar, Marieke; Suarez-Almazor, Maria E.; Boonen, Annelies; Meade, Tanya; March, Lyn; Pohl, Christoph; Jull, Janet Elizabeth; Sivarajah, Sigogini; Campbell, Willemina; Alten, Rieke; Karuranga, Suvi; Morgan, Esi; Kaufman, Jessica; Hill, Sophie; Maxwell, Lara J.; Welch, Vivian; Beaton, Dorcas; El-Miedany, Yasser; Tugwell, Peter S.

In: Journal of Rheumatology, Vol. 44, No. 10, 01.10.2017, p. 1544-1550.

Research output: Contribution to journalArticle

Toupin-April, K, Barton, J, Fraenkel, L, Li, LC, Brooks, P, De Wit, M, Stacey, D, Légaré, F, Meara, A, Shea, B, Lyddiatt, A, Hofstetter, C, Gossec, L, Christensen, R, Scholte-Voshaar, M, Suarez-Almazor, ME, Boonen, A, Meade, T, March, L, Pohl, C, Jull, JE, Sivarajah, S, Campbell, W, Alten, R, Karuranga, S, Morgan, E, Kaufman, J, Hill, S, Maxwell, LJ, Welch, V, Beaton, D, El-Miedany, Y & Tugwell, PS 2017, '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', Journal of Rheumatology, vol. 44, no. 10, pp. 1544-1550. https://doi.org/10.3899/jrheum.161241
Toupin-April, Karine ; Barton, Jennifer ; Fraenkel, Liana ; Li, Linda C. ; Brooks, Peter ; De Wit, Maarten ; Stacey, Dawn ; Légaré, France ; Meara, Alexa ; Shea, Beverley ; Lyddiatt, Anne ; Hofstetter, Cathie ; Gossec, Laure ; Christensen, Robin ; Scholte-Voshaar, Marieke ; Suarez-Almazor, Maria E. ; Boonen, Annelies ; Meade, Tanya ; March, Lyn ; Pohl, Christoph ; Jull, Janet Elizabeth ; Sivarajah, Sigogini ; Campbell, Willemina ; Alten, Rieke ; Karuranga, Suvi ; Morgan, Esi ; Kaufman, Jessica ; Hill, Sophie ; Maxwell, Lara J. ; Welch, Vivian ; Beaton, Dorcas ; El-Miedany, Yasser ; Tugwell, Peter S. / 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. In: Journal of Rheumatology. 2017 ; Vol. 44, No. 10. pp. 1544-1550.
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abstract = "Objective. The 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.Methods. Following 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. Results.A 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). Conclusion. Differences 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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T2 - Results from an OMERACT Delphi survey and consensus meeting

AU - Toupin-April, Karine

AU - Barton, Jennifer

AU - Fraenkel, Liana

AU - Li, Linda C.

AU - Brooks, Peter

AU - De Wit, Maarten

AU - Stacey, Dawn

AU - Légaré, France

AU - Meara, Alexa

AU - Shea, Beverley

AU - Lyddiatt, Anne

AU - Hofstetter, Cathie

AU - Gossec, Laure

AU - Christensen, Robin

AU - Scholte-Voshaar, Marieke

AU - Suarez-Almazor, Maria E.

AU - Boonen, Annelies

AU - Meade, Tanya

AU - March, Lyn

AU - Pohl, Christoph

AU - Jull, Janet Elizabeth

AU - Sivarajah, Sigogini

AU - Campbell, Willemina

AU - Alten, Rieke

AU - Karuranga, Suvi

AU - Morgan, Esi

AU - Kaufman, Jessica

AU - Hill, Sophie

AU - Maxwell, Lara J.

AU - Welch, Vivian

AU - Beaton, Dorcas

AU - El-Miedany, Yasser

AU - Tugwell, Peter S.

PY - 2017/10/1

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N2 - Objective. The 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.Methods. Following 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. Results.A 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). Conclusion. Differences 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.

AB - Objective. The 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.Methods. Following 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. Results.A 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). Conclusion. Differences 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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