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Psychosocial well-being is affected. Previously, we assessed burden of disease for Myasthenia gravis (MG). Here, we aim to elucidate burden of disease by comparing health-related quality of life (HRQoL) of patients with LEMS to the general population (genP) as well as MG patients.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>A questionnaire-based survey included sociodemographic and clinical data along with standardized questionnaires, e.g. the Short Form Health (SF-36). HRQoL was evaluated through matched-pairs analyses. Participants from a general health survey served as control group.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>46 LEMS patients matched by age and gender were compared to 92 controls from the genP and a matched cohort of 92 MG patients. LEMS participants showed lower levels of physical functioning (SF-36 mean 34.2 SD 28.6) compared to genP (mean 78.6 SD 21.1) and MG patients (mean 61.3 SD 31.8). LEMS patients showed lower mental health sub-scores compared to genP (SF-36 mean 62.7 SD 20.2, vs. 75.7 SD 15.1) and MG patients (SF-36 mean 62.7 SD 20.2, vs. 66.0 SD 18.). Depression, anxiety and fatigue were prevalent. Female gender, low income, lower activities of daily living, symptoms of depression, anxiety and fatigue were associated with a lower HRQoL in LEMS.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Discussion<\/jats:title>\n                <jats:p>HRQoL is lower in patients with LEMS compared to genP and MG in a matched pair-analysis. The burden of LEMS includes economic and social aspects as well as emotional well-being.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Trial Registration Information<\/jats:title>\n                <jats:p>drks.de: DRKS00024527, submitted: February 02, 2021, <jats:ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"https:\/\/drks.de\/search\/en\/trial\/DRKS00024527\">https:\/\/drks.de\/search\/en\/trial\/DRKS00024527<\/jats:ext-link>.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s00415-024-12206-6","type":"journal-article","created":{"date-parts":[[2024,2,29]],"date-time":"2024-02-29T07:02:15Z","timestamp":1709190135000},"page":"2824-2839","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Burden of disease in Lambert-Eaton myasthenic syndrome: taking the patient\u2019s perspective"],"prefix":"10.1007","volume":"271","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":"Meret","family":"Herdick","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Regina","family":"Stegherr","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":"Stein","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Philipp","family":"Mergenthaler","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":[[2024,2,29]]},"reference":[{"key":"12206_CR1","doi-asserted-by":"publisher","first-page":"421","DOI":"10.1002\/mus.25520","volume":"56","author":"DC Abenroth","year":"2017","unstructured":"Abenroth DC, Smith AG, Greenlee JE, Austin SD, Clardy SL (2017) Lambert-Eaton myasthenic syndrome: epidemiology and therapeutic response in the national veterans affairs population. 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Meret Herdick has received speaker\u2019s honaria from argenx. Sarah Hoffmann has received speaker\u00b4s honoraria and honoraria for attendance at advisory boards from Alexion, argenx, Roche and UCB. Frauke Stascheit received speaker\u00b4s honoraria and honoria for attendance of advisory boards from Alexion, argnx and UCB. Maike Stein\u00a0has received speaker\u00b4s honoraria and\u00a0honoraria\u00a0for attendance at advisory boards from argenx and Alexion. Andreas Meisel has received speaker or consultancy honoraria or financial research support (paid to his institution) from Alexion Pharmaceuticals, argenx, Axunio, Destin, Grifols, Hormosan Pharma, Janssen, Merck, Octapharma, UCB, and Xcenda. All other authors report no disclosures relevant to the manuscript.","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- Universit\u00e4tsmedizin Berlin (EA1\/008\/19). The study was conducted in accordance to the declaration of Helsinki and the STROBE reporting guidelines and was registered on drks.de (DRKS00024527).","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\u00b4s policies. The authors take full responsibility for the data, the analyses and interpretation, and the conduct of the research. They have full access to all of the data, and the right to publish any and all data separate and apart from the guidance of any sponsor.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}}]}}