TY - JOUR
T1 - Advancing the development of patient-reported outcomes for adult myositis at OMERACT 2016
T2 - An International Delphi Study
AU - Park, Jin Kyun
AU - Mecoli, Christopher A.
AU - Alexanderson, Helene
AU - Regardt, Malin
AU - Christopher-Stine, Lisa
AU - Casal-Domínguez, María
AU - De Groot, Ingrid
AU - Sarver, Catherine
AU - Lundberg, Ingrid E.
AU - Bingham, Clifton O.
AU - Song, Yeong Wook
N1 - Publisher Copyright:
Copyright © 2017. All rights reserved.
PY - 2017/11/1
Y1 - 2017/11/1
N2 - Objective: To define a set of core patient-reported domains and respective instruments for use in idiopathic inflammatory myopathies (IIM). Previously, we reported a systematic literature review on patient-reported outcomes (PRO) in IIM followed by conducting international focus groups to elicit patient perspectives of myositis symptoms and effects. Methods: Based on qualitative content analysis of focus groups, an initial list of 26 candidate domains was constructed. We subsequently conducted an international modified Delphi survey to identify the importance of each of the 26 domains. Participants were asked to rate each domain on a scale of 0-10 (0 = not important, 10 = very important). Results: In this first round of the Delphi survey, 643 patients participated from the United States (n = 543), Sweden (n = 49), and South Korea (n = 51). of the 26 domains, 19 (73%) were rated of high importance (≥ 7/10). The top 5 domains were muscle symptoms, fatigue, interactions with healthcare, medication side effects, and pain. During Outcome Measures in Rheumatology (OMERACT) 2016, we discussed the goal for ultimate reduction in the number of domains and the importance of considering representation of healthcare providers from other specialties, caregivers, representatives of pharmaceutical industries, and regulatory authorities in the next rounds of Delphi to represent broader perspectives on IIM. Conclusion: Further prioritization and a reduction in the number of domains will be needed for the next Delphi. At the next biennial OMERACT meeting, we aim to present and seek voting on a Myositis Preliminary PRO Core Set to enable ultimate measure selection and development.
AB - Objective: To define a set of core patient-reported domains and respective instruments for use in idiopathic inflammatory myopathies (IIM). Previously, we reported a systematic literature review on patient-reported outcomes (PRO) in IIM followed by conducting international focus groups to elicit patient perspectives of myositis symptoms and effects. Methods: Based on qualitative content analysis of focus groups, an initial list of 26 candidate domains was constructed. We subsequently conducted an international modified Delphi survey to identify the importance of each of the 26 domains. Participants were asked to rate each domain on a scale of 0-10 (0 = not important, 10 = very important). Results: In this first round of the Delphi survey, 643 patients participated from the United States (n = 543), Sweden (n = 49), and South Korea (n = 51). of the 26 domains, 19 (73%) were rated of high importance (≥ 7/10). The top 5 domains were muscle symptoms, fatigue, interactions with healthcare, medication side effects, and pain. During Outcome Measures in Rheumatology (OMERACT) 2016, we discussed the goal for ultimate reduction in the number of domains and the importance of considering representation of healthcare providers from other specialties, caregivers, representatives of pharmaceutical industries, and regulatory authorities in the next rounds of Delphi to represent broader perspectives on IIM. Conclusion: Further prioritization and a reduction in the number of domains will be needed for the next Delphi. At the next biennial OMERACT meeting, we aim to present and seek voting on a Myositis Preliminary PRO Core Set to enable ultimate measure selection and development.
KW - Myositis
KW - Omeract delphi
KW - Outcome assessment
KW - Patient-reported outcomes
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U2 - 10.3899/jrheum.161252
DO - 10.3899/jrheum.161252
M3 - Article
C2 - 28765245
AN - SCOPUS:85032616673
SN - 0315-162X
VL - 44
SP - 1683
EP - 1687
JO - Journal of Rheumatology
JF - Journal of Rheumatology
IS - 11
ER -