{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,7]],"date-time":"2026-05-07T03:03:22Z","timestamp":1778123002198,"version":"3.51.4"},"reference-count":25,"publisher":"Springer Science and Business Media LLC","issue":"6","license":[{"start":{"date-parts":[[2025,6,4]],"date-time":"2025-06-04T00:00:00Z","timestamp":1748995200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2025,6,4]],"date-time":"2025-06-04T00:00:00Z","timestamp":1748995200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"Medizinische Hochschule Brandenburg CAMPUS GmbH"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Rheumatol Int"],"abstract":"<jats:title>Abstract<\/jats:title>\n          <jats:p>Myositis is a rare autoimmune disease primarily affecting muscles, with potential involvement of the skin, heart, and lungs. Patients often experience delays in diagnosis, lack of adequate information, and limited support for disease management. Social media has emerged as a valuable tool to address these gaps by facilitating information exchange, peer support, and community building. However, its role in myositis care is not yet well understood. This study aims to explore how myositis patients use social media, focusing on shared content, perceived benefits and challenges, and the overall impact on disease management and emotional well-being. A mixed-methods approach was applied, including semi-structured interviews with 11 patients and a netnographic analysis of social media group dedicated to myositis care. Data were analyzed using Kuckartz\u2019s structured qualitative content analysis, with coding performed inductively, to identify key themes. Four key themes emerged: (I) Social media as a global platform for sharing experiential knowledge, particularly on symptom management, medication side effects, and coping strategies. (II) Peer support fostering a sense of belonging, emotional exchange, and mutual encouragement through structured discussions and community-driven moderation. (III) Perceived benefits, such as real-time access to patient-driven insights, shared decision-making support, and enhanced communication with healthcare providers. (IV) Perceived drawbacks, including misinformation, privacy concerns, and the absence of professional medical input. Participants emphasized the need for expert involvement to improve content reliability, while also valuing the autonomy and emotional support within these communities. Social media platforms, particularly closed groups, provide a complementary avenue to traditional care by offering support and knowledge exchange. To maximize their potential, privacy concerns and the integration of professional guidance must be addressed.<\/jats:p>","DOI":"10.1007\/s00296-025-05903-6","type":"journal-article","created":{"date-parts":[[2025,6,4]],"date-time":"2025-06-04T12:13:39Z","timestamp":1749039219000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Social media in myositis care \u2013 an exploratory mixed-methods study among myositis patients (SociMyo)"],"prefix":"10.1007","volume":"45","author":[{"ORCID":"https:\/\/orcid.org\/0009-0009-9616-6278","authenticated-orcid":false,"given":"Katharina","family":"Boy","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0004-1539-5890","authenticated-orcid":false,"given":"Niklas","family":"Ohm","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3847-4861","authenticated-orcid":false,"given":"Susann","family":"May","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0004-2046-087X","authenticated-orcid":false,"given":"Greta","family":"Nordmann","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0008-4371-3373","authenticated-orcid":false,"given":"Lynn","family":"Wilson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9695-0657","authenticated-orcid":false,"given":"Johannes","family":"Knitza","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3645-1033","authenticated-orcid":false,"given":"Martin","family":"Heinze","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2753-2990","authenticated-orcid":false,"given":"Latika","family":"Gupta","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8571-7286","authenticated-orcid":false,"given":"Felix","family":"Muehlensiepen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2025,6,4]]},"reference":[{"issue":"6","key":"5903_CR1","doi-asserted-by":"publisher","first-page":"510","DOI":"10.1007\/s00115-023-01490-8","volume":"94","author":"J Schmidt","year":"2023","unstructured":"Schmidt J, M\u00fcller-Felber W (2023) Myositis: von der diagnose Zur therapie [Myositis: from diagnosis to treatment]. Nervenarzt 94(6):510\u2013518. https:\/\/doi.org\/10.1007\/s00115-023-01490-8","journal-title":"Nervenarzt"},{"issue":"1","key":"5903_CR2","doi-asserted-by":"publisher","first-page":"62","DOI":"10.1186\/s42466-022-00226-4","volume":"4","author":"M Pawlitzki","year":"2022","unstructured":"Pawlitzki M, Acar L, Masanneck L, Willison A, Regner-Nelke L, Nelke C (2022) Myositis in Germany: epidemiological insights over 15 years from 2005 to 2019. Neurol Res Pract 4(1):62. https:\/\/doi.org\/10.1186\/s42466-022-00226-4","journal-title":"Neurol Res Pract"},{"key":"5903_CR3","doi-asserted-by":"publisher","DOI":"10.1007\/s00296-023-05372-9","author":"M Weiss","year":"2023","unstructured":"Weiss M, Holzer MT, Muehlensiepen F, Schr\u00f6der K, M\u00fcller L, Bittner J (2023) Healthcare utilization and unmet needs of patients with antisynthetase syndrome: an international patient survey. Rheumatol Int. https:\/\/doi.org\/10.1007\/s00296-023-05372-9","journal-title":"Rheumatol Int"},{"issue":"1","key":"5903_CR4","doi-asserted-by":"publisher","first-page":"e002745","DOI":"10.1136\/rmdopen-2022-002745","volume":"9","author":"L Gupta","year":"2023","unstructured":"Gupta L, Afsar AP, Scherbarth S, Ghosh S, Titus RS, Cheng K, Kanawala AA, Kerkhof P, Day J (2023) Addressing the unmet need for self-management strategies in idiopathic inflammatory myositis. RMD Open 9(1):e002745. https:\/\/doi.org\/10.1136\/rmdopen-2022-002745","journal-title":"RMD Open"},{"key":"5903_CR5","doi-asserted-by":"publisher","first-page":"383","DOI":"10.1007\/s11926-024-01157-6","volume":"26","author":"S Battista","year":"2024","unstructured":"Battista S, Giardulli B, Sieiro Santos C, Aharonov O, Puttaswamy D, Russell AM, Gupta L (2024) Digital health and self-management in idiopathic inflammatory myopathies: a missed opportunity? 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JMIR Mental Health 9(4):e33450. https:\/\/doi.org\/10.2196\/33450","journal-title":"JMIR Mental Health"}],"container-title":["Rheumatology International"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00296-025-05903-6.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s00296-025-05903-6\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00296-025-05903-6.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,6,18]],"date-time":"2025-06-18T09:31:02Z","timestamp":1750239062000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s00296-025-05903-6"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,6,4]]},"references-count":25,"journal-issue":{"issue":"6","published-online":{"date-parts":[[2025,6]]}},"alternative-id":["5903"],"URL":"https:\/\/doi.org\/10.1007\/s00296-025-05903-6","relation":{},"ISSN":["1437-160X"],"issn-type":[{"value":"1437-160X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,6,4]]},"assertion":[{"value":"18 February 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"9 May 2025","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"4 June 2025","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The study was approved by IRB at Brandenburg Medical School, Germany (157102023-NMF-E). Written informed consent was obtained from all study participants. All methods were performed in accordance with relevant guidelines and regulations\/declarations of Helsinki. Informed consent was obtained from all subjects and\/or their legal guardian(s) for study participation. This manuscript has been compiled in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ).","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics statement"}},{"value":"No part of this manuscript, including text and graphics, has been copied or published elsewhere, either in whole or in part. No AI was used to generate original research content or results. The views and opinions expressed are solely those of the author and do not represent or reflect those of any affiliated institution (LG).","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Disclaimer"}},{"value":"KB, NO, GN, LW, JK, MH and LG declare no conflicts of interest. SM and FM have received funding from AbbVie and Novartis. LG is co-chair of EMEUNET social media and serves as social media editor for the Journal of Clinical Rheumatology.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}}],"article-number":"149"}}