RT Journal Article
SR Electronic
T1 Advancing the Development of Patient-reported Outcomes for Adult Myositis at OMERACT 2016: An International Delphi Study
JF The Journal of Rheumatology
JO J Rheumatol
FD The Journal of Rheumatology
SP 1683
OP 1687
DO 10.3899/jrheum.161252
VO 44
IS 11
A1 Jin Kyun Park
A1 Christopher A. Mecoli
A1 Helene Alexanderson
A1 Malin Regardt
A1 Lisa Christopher-Stine
A1 María Casal-Domínguez
A1 Ingrid de Groot
A1 Catherine Sarver
A1 Ingrid E. Lundberg
A1 Clifton O. Bingham 3rd
A1 Yeong Wook Song
YR 2017
UL http://www.jrheum.org/content/44/11/1683.abstract
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.