{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,30]],"date-time":"2026-01-30T05:14:37Z","timestamp":1769750077166,"version":"3.49.0"},"reference-count":24,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2025,2,24]],"date-time":"2025-02-24T00:00:00Z","timestamp":1740355200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2025,2,24]],"date-time":"2025-02-24T00:00:00Z","timestamp":1740355200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"Priovant Therapeutics Inc"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Rheumatol"],"abstract":"<jats:title>Abstract<\/jats:title>\n          <jats:sec>\n            <jats:title>Objectives<\/jats:title>\n            <jats:p>Dermatomyositis (DM) is a rare and progressive immune-mediated disease with no cure and significant patient burden that encompasses physical, mental, and financial impacts. Patients experience debilitating symptoms that may include muscle weakness, itchy and painful rash, joint pain, and fatigue. Despite the heterogeneity of the disease and the breadth of possible symptoms, the impact of DM on a diverse range of patients\u2019 quality of life (QoL) has not been well-characterized in literature. The aim of this study was to describe the experiences of patients living with DM as they relate to physical and mental impacts, productivity, and treatment patterns and satisfaction.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Methods<\/jats:title>\n            <jats:p>To address this deficiency, a 60-question survey was developed to capture adult patient perspectives on the impact of DM on their QoL. Members of The Myositis Association (TMA) with a self-reported diagnosis of DM who were 18\u201375 years old and whose disease duration was \u2265\u20091 year were invited to complete the online survey.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Results<\/jats:title>\n            <jats:p>Respondents were predominantly female (88%, 172\/195), white (82%, 160\/195), and had a median age of 57 years. Approximately 50% (98\/195) of the respondents rated their overall symptoms as moderate and the three most bothersome symptoms were muscle weakness (44%, 86\/195), fatigue (43%, 84\/195), and muscle pain (30%, 59\/195). Almost all respondents (83%, 162\/195) experienced some form of mental stress due to DM and reported that this had a negative impact on interpersonal relationships. The majority (87%, 170\/195) of respondents were less than satisfied with the level of support they received for DM.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Conclusions<\/jats:title>\n            <jats:p>Our study demonstrates the significant burden of DM on a patients\u2019 QoL and there remains a large unmet need for financial support, mental health care, and improved treatment options for patients living with DM.<\/jats:p>\n          <\/jats:sec>","DOI":"10.1186\/s41927-025-00458-2","type":"journal-article","created":{"date-parts":[[2025,2,24]],"date-time":"2025-02-24T10:38:51Z","timestamp":1740393531000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Patient reported physical function, mental health, and treatment patterns in dermatomyositis: survey results from a cross-sectional study of adult dermatomyositis patients"],"prefix":"10.1186","volume":"9","author":[{"given":"Lisa","family":"Christopher-Stine","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Julie J.","family":"Paik","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alexandra S.","family":"Goriounova","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"suffix":"Jr.","given":"Paul N.","family":"Mudd","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2025,2,24]]},"reference":[{"key":"458_CR1","doi-asserted-by":"publisher","first-page":"1487","DOI":"10.1056\/nejm199111213252107","volume":"325","author":"MC Dalakas","year":"1991","unstructured":"Dalakas MC, Polymyositis, Dermatomyositis, Inclusion-Body Myositis. 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The survey protocol was submitted to the Western IRB-Copernicus Group (WCG) and received an IRB exemption on June 22, 2022 under 45 CFR \u00a7\u00a046.104(d)(2). Informed consent was obtained from all individual participants involved in the study.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"L. C-S has received consulting fees and\/or honoraria from Abcuro, Allogene, AlloNK, Amgen, Argenx, BoehringerIngelheim, BMS, Chugai, the Dysimmune Disease Foundation, Gallapagos, Immunovant, Janssen, Mallinckrodt, Nkarta, Nuvig, Octapharma, Priovant Therapeutics, Roivant Sciences, Steritas, and EMD Serono, and research support from Abcuro, Corbus Pharmaceuticals, Kezar Life Sciences, and Pfizer Inc.J.J. P has received research support from Argenx Corbus Pharmaceuticals, Kezar Life Sciences, and Pfizer Inc.; consulting fees and\/or honoraria from Argenx, Alexion, EMD Serono, Guidepoint Consulting, Pfizer Inc., Priovant Therapeutics, and Roivant Sciences, and is supported by grant number K23AR073927 from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). P.N M Jr. and A.S G are employees of Priovant Therapeutics. J.J. Paik has received research support from Argenx Corbus Pharmaceuticals, Kezar Life Sciences, and Pfizer Inc.; consulting fees and\/or honoraria from Argenx, Alexion, EMD Serono, Guidepoint Consulting, Pfizer Inc., Priovant Therapeutics, and Roivant Sciences, and is supported by grant number K23AR073927 from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). P.N Mudd Jr. and A.S Goriounova are employees of Priovant Therapeutics.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"23"}}