{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T18:24:06Z","timestamp":1783016646596,"version":"3.54.6"},"reference-count":17,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2024,12,18]],"date-time":"2024-12-18T00:00:00Z","timestamp":1734480000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100018748","name":"Argenx","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100018748","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Muscle and Nerve"],"published-print":{"date-parts":[[2025,2]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:sec><jats:title>Introduction\/Aims<\/jats:title><jats:p>Claims\u2010based analyses have demonstrated high medical costs associated with myasthenia gravis (MG). We examined the economic burden of MG from the perspective of affected people and their families.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>The Muscular Dystrophy Association developed and conducted an online survey of people with MG and their caregivers between October 26 and December 6, 2021. Major themes were: MG\u2010associated financial decisions, quality of life, employment and direct\/indirect costs of diagnosis, healthcare insurance, medical visits, medications\/treatments, medical equipment\/devices, and caregiving.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Eight hundred people with MG and 238 caregivers responding on behalf of a person with MG completed the survey. Most respondents were white (85%) and about half (55%) had received a 4\u2009year college degree or higher education. Respondents indicated that MG impacted their health, recreation, and finances. 70% reported making financial adjustments or seeking financial assistance. Annual out\u2010of\u2010pocket costs (mean, $15,798; median, $7750) were primarily driven by medications, cost to receive a diagnosis, and healthcare insurance premiums. People receiving infusions paid significantly more across all care domains. Demographic disparities were observed, with people of color, women, and those on disability paying significantly more to receive a diagnosis than their counterparts.<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion<\/jats:title><jats:p>The economic burden on people with MG and their families is substantial, primarily driven by direct costs. There is a need to engage more broadly with the MG community for generalizable information. Respondents were self\u2010selected, which may impact results. The results will be used to educate the public and inform advocacy work, with the goal of improving the lives of people with MG.<\/jats:p><\/jats:sec>","DOI":"10.1002\/mus.28313","type":"journal-article","created":{"date-parts":[[2024,12,19]],"date-time":"2024-12-19T07:50:37Z","timestamp":1734594637000},"page":"244-251","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["The Economic Burden of Myasthenia Gravis (<scp>MG<\/scp>): A Survey of Affected People and Their Families"],"prefix":"10.1002","volume":"71","author":[{"ORCID":"https:\/\/orcid.org\/0009-0004-7298-3605","authenticated-orcid":false,"given":"Kathleen","family":"Yoder","sequence":"first","affiliation":[{"name":"Muscular Dystrophy Association  Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachael","family":"Burris","sequence":"additional","affiliation":[{"name":"Muscular Dystrophy Association  Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-7289-8403","authenticated-orcid":false,"given":"Sujatha","family":"Gurunathan","sequence":"additional","affiliation":[{"name":"SG Science Writing Solutions  Setauket New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Glenn","family":"Phillips","sequence":"additional","affiliation":[{"name":"Argenx US Inc  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathy","family":"Perez","sequence":"additional","affiliation":[{"name":"Argenx US Inc  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3432-9747","authenticated-orcid":false,"given":"Ali A.","family":"Habib","sequence":"additional","affiliation":[{"name":"University of California  Irvine California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9412-7349","authenticated-orcid":false,"given":"Pushpa","family":"Narayanaswami","sequence":"additional","affiliation":[{"name":"Beth Israel Deaconess\/Harvard Medical School  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2024,12,18]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/J.NCL.2018.01.002"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000012604"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.3389\/FNEUR.2020.553626"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/MUS.22212"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.3389\/FNEUR.2021.809999\/BIBTEX"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/MUS.27992"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1007\/S40273\u2010020\u201000912\u20108"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.3389\/FPUBH.2022.822909\/BIBTEX"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/J.JOCN.2015.01.022"},{"key":"e_1_2_11_11_1","unstructured":"United Sates Census \u201cIndex of \/Geo\/Pdfs\/Maps\u2010Data\/Maps\/Reference \u201d(2023) https:\/\/www2.census.gov\/geo\/pdfs\/maps\u2010data\/maps\/reference\/."},{"key":"e_1_2_11_12_1","unstructured":"Statology \u201cHow to Winsorize Data: Definition & Examples\u2014Statology \u201d(2023) https:\/\/www.statology.org\/winsorize\/."},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/J.DAJOUR.2023.100164"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1186\/S13023\u2010022\u201002299\u20105\/FIGURES\/2"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1080\/03007995.2024.2353381"},{"key":"e_1_2_11_16_1","doi-asserted-by":"crossref","unstructured":"S.Lehnerer M.Herdick A.Mevius et\u00a0al. \u201cThe Economic Burden of Myasthenia Gravis From the Patient's Perspective and Reflected in German Claims Data \u201d(2024) Available at SSRN https:\/\/doi.org\/10.2139\/SSRN.4904054.","DOI":"10.2139\/ssrn.4904054"},{"key":"e_1_2_11_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/ENE.16511"},{"key":"e_1_2_11_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jocn.2016.11.003"}],"container-title":["Muscle &amp; 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