{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,29]],"date-time":"2026-10-29T23:32:02Z","timestamp":1793316722052,"version":"4.5.0"},"reference-count":52,"publisher":"Springer Science and Business Media LLC","issue":"6","license":[{"start":{"date-parts":[[2021,11,20]],"date-time":"2021-11-20T00:00:00Z","timestamp":1637366400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2021,11,20]],"date-time":"2021-11-20T00:00:00Z","timestamp":1637366400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J Neurol"],"published-print":{"date-parts":[[2022,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>Myasthenia gravis (MG) leads to exertion-dependent muscle weakness, but also psychological and social well-being are limited. We aim to describe the burden of disease in MG including sociodemographic, economical, psychosocial as well as clinical aspects, to compare health-related quality of life (HRQoL) of patients with MG to the general population (genP) and to explore risk factors for a lower HRQoL.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>This case\u2013control study was conducted with MG patients of the German Myasthenia Association. A questionnaire-based survey included sociodemographic and clinical data as well as standardized questionnaires, e.g. the Short Form Health (SF-36). HRQoL was compared to genP in a matched-pairs analysis. Participants of the German Health Interview and Examination Survey for Adults (DEGS1) served as control group.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>In our study, 1660 MG patients participated and were compared to 2556 controls from the genP. Patients with MG showed lower levels of physical functioning (SF-36 mean 56.0, SD 30.3) compared to the genP (mean 81.8, SD 22.1, adjusted difference: 25, 95% CI 22\u201329) and lower mental health sub-score (SF-36 mean 67.3, SD 19.8, vs. 74.1, SD 16.7, adjusted difference: 5, 95% CI 2\u20138). Female gender, higher age, low income, partnership status, lower activities of daily life, symptoms of depression, anxiety and fatigue and self-perceived low social support were associated with a lower HRQoL in MG patients.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Discussion<\/jats:title>\n                <jats:p>HRQoL is lower in patients with MG compared to genP. The burden of MG on patients includes economic and social aspects as well as their emotional well-being. New therapies must achieve improvements for patients in these areas.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Trial registration information<\/jats:title>\n                <jats:p>Clinicaltrials.gov, NCT03979521, submitted: June 7, 2019, first patient enrolled: May 1, 2019, <jats:ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"https:\/\/clinicaltrials.gov\/ct2\/show\/NCT03979521\">https:\/\/clinicaltrials.gov\/ct2\/show\/NCT03979521<\/jats:ext-link><\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s00415-021-10891-1","type":"journal-article","created":{"date-parts":[[2021,11,20]],"date-time":"2021-11-20T07:04:33Z","timestamp":1637391873000},"page":"3050-3063","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":158,"title":["Burden of disease in myasthenia gravis: taking the patient\u2019s perspective"],"prefix":"10.1007","volume":"269","clinical-trial-number":[{"clinical-trial-number":"nct03979521","registry":"10.18810\/clinical-trials-gov"}],"author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9007-027X","authenticated-orcid":false,"given":"Sophie","family":"Lehnerer","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jonas","family":"Jacobi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ralph","family":"Schilling","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ulrike","family":"Grittner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Derin","family":"Marbin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lea","family":"Gerischer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Frauke","family":"Stascheit","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maike","family":"Krause","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Hoffmann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andreas","family":"Meisel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2021,11,20]]},"reference":[{"key":"10891_CR1","doi-asserted-by":"publisher","first-page":"26","DOI":"10.1111\/ane.12233","volume":"129","author":"JB Andersen","year":"2014","unstructured":"Andersen JB, Heldal AT, Engeland A, Gilhus NE (2014) Myasthenia gravis epidemiology in a national cohort; combining multiple disease registries. 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Maike Krause received speaker\u2019s honoraria from Argnx. Frauke Stascheit received speaker\u2019s honoraria from Alexion. Andreas Meisel received speaker\u2019s honoraria from Alexion, Grifols and Hormosan. He received honoraria from Alexion, UCB, MorphoSys and Argnx for consulting services and financial research support from Octapharma and Alexion. All other authors report no disclosures relevant to the manuscript. Non-financial: Andreas Meisel is Chairman of the medical advisory board of the German Myasthenia Gravis Society.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflicts of interest"}},{"value":"The study was conducted in accordance to the declaration of Helsinki and received ethics approval by the institutional ethics committee of Charit\u00e9 University Medicine Berlin (EA1\/008\/19). The study was conducted in accordance to the declaration of Helsinki and the STROBE reporting guidelines and was registered on clinicaltrials.gov (NCT03205306).","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical statement"}},{"value":"Data were obtained by a large questionnaire-based survey. No written informed consent was obtained from the study participants because the data collection was completely anonymous.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"All authors have approved the manuscript for submission, accordingly the manuscript conforms to the journal\u2019s policies. The authors take full responsibility for the data, the analyses and interpretation, and the conduct of the research. 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