Advancing the Development of Patient-reported Outcomes for Adult Myositis at OMERACT 2016: An International Delphi Study
| العنوان: | Advancing the Development of Patient-reported Outcomes for Adult Myositis at OMERACT 2016: An International Delphi Study |
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| المؤلفون: | Ingrid E. Lundberg, Lisa Christopher-Stine, Catherine Sarver, Christopher A. Mecoli, Jin Kyun Park, Helene Alexanderson, Yeong Wook Song, Malin Regardt, Ingrid de Groot, Maria Casal-Dominguez, Clifton O. Bingham |
| المصدر: | The Journal of Rheumatology. 45:1071.1-1071 |
| بيانات النشر: | The Journal of Rheumatology, 2018. |
| سنة النشر: | 2018 |
| مصطلحات موضوعية: | medicine.medical_specialty, Delphi Technique, Immunology, MEDLINE, Alternative medicine, Delphi method, Severity of Illness Index, Article, 03 medical and health sciences, 0302 clinical medicine, Rheumatology, Internal medicine, Health care, Humans, Immunology and Allergy, Medicine, Patient Reported Outcome Measures, 030212 general & internal medicine, Myositis, computer.programming_language, 030203 arthritis & rheumatology, business.industry, Focus Groups, medicine.disease, Focus group, Systematic review, Scale (social sciences), Family medicine, Physical therapy, Symptom Assessment, business, computer, Delphi |
| الوصف: | 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. |
| تدمد: | 1499-2752 0315-162X |
| URL الوصول: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::b263856d34f4bdc01e63d1770f35c128 https://doi.org/10.3899/jrheum.161252.c2 |
| حقوق: | OPEN |
| رقم الأكسشن: | edsair.doi.dedup.....b263856d34f4bdc01e63d1770f35c128 |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 14992752 0315162X |
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