{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,6]],"date-time":"2026-11-06T20:01:19Z","timestamp":1793995279988,"version":"4.8.0"},"reference-count":20,"publisher":"The Journal of Rheumatology","issue":"1","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J Rheumatol"],"published-print":{"date-parts":[[2019,1]]},"abstract":"<jats:sec><jats:title>Objective.<\/jats:title><jats:p>Patient-reported outcome measures (PROM) that incorporate the patient perspective have not been well established in idiopathic inflammatory myopathies (IIM). As part of our goal to develop IIM-specific PROM, the Outcome Measures in Rheumatology (OMERACT) Myositis special interest group sought to determine which aspects of disease and its effects are important to patients and healthcare providers (HCP).<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods.<\/jats:title><jats:p>Based on a prior qualitative content analysis of focus groups, an initial list of 24 candidate domains was constructed. We subsequently conducted an international survey to identify the importance of each of the 24 domains to be assessed in clinical research. Patients with IIM, their caregivers, and HCP treating IIM completed the survey.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results.<\/jats:title><jats:p>In this survey, a total of 638 respondents completed the survey, consisting of 510 patients, 101 HCP, and 27 caregivers from 48 countries. Overall, patients were more likely to rank \u201cfatigue,\u201d \u201ccognitive impact,\u201d and \u201cdifficulty sleeping\u201d higher compared with HCP, who ranked \u201cjoint symptoms,\u201d \u201clung symptoms,\u201d and \u201cdysphagia\u201d higher. Both patients and providers rated muscle symptoms as their top domain. In general, patients from different countries were in agreement on which domains were most important. One notable exception was that patients from Sweden and the Netherlands ranked lung symptoms significantly higher compared to other countries including the United States and Australia (mean weighted rankings of 2.86 and 2.04 vs 0.76 and 0.80, respectively; p &lt; 0.0001).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion.<\/jats:title><jats:p>Substantial differences exist in how IIM is perceived by patients compared to HCP, with different domains prioritized. In contrast, patients\u2019 ratings across the world were largely similar.<\/jats:p><\/jats:sec>","DOI":"10.3899\/jrheum.180353","type":"journal-article","created":{"date-parts":[[2018,9,16]],"date-time":"2018-09-16T01:05:39Z","timestamp":1537059939000},"page":"106-111","source":"Crossref","is-referenced-by-count":44,"title":["Perceptions of Patients, Caregivers, and Healthcare Providers of Idiopathic Inflammatory Myopathies: An International OMERACT Study"],"prefix":"10.3899","volume":"46","author":[{"given":"Christopher A.","family":"Mecoli","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jin Kyun","family":"Park","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Helene","family":"Alexanderson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Malin","family":"Regardt","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Merrilee","family":"Needham","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ingrid","family":"de Groot","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Sarver","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ingrid E.","family":"Lundberg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Beverley","family":"Shea","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marianne","family":"de Visser","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yeong Wook","family":"Song","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"suffix":"3rd","given":"Clifton O.","family":"Bingham","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lisa","family":"Christopher-Stine","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"2262","published-online":{"date-parts":[[2018,9,15]]},"reference":[{"key":"2019010716553450000_46.1.106.1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(03)14368-1"},{"key":"2019010716553450000_46.1.106.2","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/keh404"},{"key":"2019010716553450000_46.1.106.3","doi-asserted-by":"crossref","first-page":"578","DOI":"10.1093\/rheumatology\/keq356","article-title":"Patients with polymyositis or dermatomyositis have reduced grip force and health-related quality of life in comparison with reference values: an observational study","volume":"50","author":"Regardt","year":"2011","journal-title":"Rheumatology"},{"key":"2019010716553450000_46.1.106.4","first-page":"2230","article-title":"Polymyositis and dermatomyositis: short term and longterm outcome, and predictive factors of prognosis","volume":"28","author":"Marie","year":"2001","journal-title":"J Rheumatol"},{"key":"2019010716553450000_46.1.106.5","unstructured":"OMERACT . [Internet. Accessed August 9, 2018.] Available from: www.omeract.org."},{"key":"2019010716553450000_46.1.106.6","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.110395"},{"key":"2019010716553450000_46.1.106.7","doi-asserted-by":"publisher","DOI":"10.1186\/1745-6215-8-38"},{"key":"2019010716553450000_46.1.106.8","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.131247"},{"key":"2019010716553450000_46.1.106.9","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2011.06.014"},{"key":"2019010716553450000_46.1.106.10","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2011.06.013"},{"key":"2019010716553450000_46.1.106.11","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.131312"},{"key":"2019010716553450000_46.1.106.12","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.110391"},{"key":"2019010716553450000_46.1.106.13","doi-asserted-by":"publisher","DOI":"10.1016\/j.nedt.2003.10.001"},{"key":"2019010716553450000_46.1.106.14","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis-2011-201201"},{"key":"2019010716553450000_46.1.106.15","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.141243"},{"key":"2019010716553450000_46.1.106.16","doi-asserted-by":"crossref","first-page":"1171","DOI":"10.1007\/s10067-018-3990-9","article-title":"Cognitive impairment in rheumatoid arthritis: role of lymphocyte subsets, cytokines and neurotrophic factors","volume":"37","author":"Petersen","year":"2018","journal-title":"Clin Rheumatol"},{"key":"2019010716553450000_46.1.106.17","doi-asserted-by":"crossref","first-page":"377","DOI":"10.1016\/j.jaad.2015.09.016","article-title":"A cross-sectional study of untreated depression and anxiety in cutaneous lupus erythematosus and dermatomyositis","volume":"74","author":"Achtman","year":"2016","journal-title":"J Am Acad Dermatol"},{"key":"2019010716553450000_46.1.106.18","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis-2017-211868"},{"key":"2019010716553450000_46.1.106.19","doi-asserted-by":"crossref","first-page":"733","DOI":"10.1007\/s00408-016-9896-x","article-title":"Assessment of mortality in autoimmune myositis with and without associated interstitial lung disease","volume":"194","author":"Johnson","year":"2016","journal-title":"Lung"},{"key":"2019010716553450000_46.1.106.20","doi-asserted-by":"publisher","DOI":"10.1016\/0895-4356(93)90142-N"}],"container-title":["The Journal of Rheumatology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.3899\/jrheum.180353","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2019,10,24]],"date-time":"2019-10-24T07:15:20Z","timestamp":1571901320000},"score":1,"resource":{"primary":{"URL":"http:\/\/www.jrheum.org\/lookup\/doi\/10.3899\/jrheum.180353"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,9,15]]},"references-count":20,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2019,1,1]]},"published-print":{"date-parts":[[2019,1]]}},"alternative-id":["10.3899\/jrheum.180353"],"URL":"https:\/\/doi.org\/10.3899\/jrheum.180353","relation":{},"ISSN":["0315-162X","1499-2752"],"issn-type":[{"value":"0315-162X","type":"print"},{"value":"1499-2752","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,9,15]]}}}