{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,9]],"date-time":"2026-07-09T22:42:01Z","timestamp":1783636921464,"version":"3.55.0"},"reference-count":46,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2023,12,14]],"date-time":"2023-12-14T00:00:00Z","timestamp":1702512000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Neurol."],"abstract":"<jats:sec><jats:title>Background<\/jats:title><jats:p>Myasthenia gravis (MG) is a rare autoimmune disease and chronic condition that necessitates specialized care. Patients experience a significant burden of disease affecting various aspects of their lives. The aim of this study was to investigate the impact of MG on family planning, challenges associated with pregnancy, childcare responsibilities and the extent to which MG patients perceive and utilize social support.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>This analysis used data from our main data of a large cross-sectional study built on a questionnaire-based survey encompassing 1,660 MG patients and members of the German Myasthenia Association (Deutsche Myasthenie Gesellschaft), and focused on sociodemographic, clinical and family planning relevant data points.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Decisions regarding family planning were significantly impacted for individuals with MG when MG symptoms started either before or during their family planning (men: <jats:italic>n<\/jats:italic>\u2009=\u200919 and 29.7%; women: <jats:italic>n<\/jats:italic>\u2009=\u2009156 and 58.4%). In this subgroup a substantial proportion opted against parenthood due to MG (men: <jats:italic>n<\/jats:italic>\u2009=\u20098 and 50.0%; women: <jats:italic>n<\/jats:italic>\u2009=\u200954 and 38.0% and\/or another <jats:italic>n<\/jats:italic>\u2009=\u200912 and 8.4% of female participants encountered partner-related refusals). In the subgroup of female SP with MG starting before or during family planning who have reported ever been pregnant the self-reported miscarriage rate was 29.0% (<jats:italic>n<\/jats:italic>\u2009=\u200951). MG patients with medium incomes or moderate disease severity reported lower levels of perceived social support. 42.7% (<jats:italic>n<\/jats:italic>\u2009=\u2009606) of participants needed assistance in negotiations with health insurers and 28.0% (<jats:italic>n<\/jats:italic>\u2009=\u2009459) needed support for transportation to medical appointments.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>This study shows a significant impact of MG on family planning decisions, affecting both women and men, and often resulting in life-altering decisions such as voluntary childlessness due to MG. The significance of social support becomes evident as a vital factor, especially when navigating through the healthcare system. Tailored healthcare approaches, organized guidance and comprehensive support is needed to enable informed decision-making and offer assistance for MG patients.<\/jats:p><\/jats:sec><jats:sec><jats:title>Clinical trial registration<\/jats:title><jats:p><jats:ext-link>https:\/\/clinicaltrials.gov\/study\/NCT03979521<\/jats:ext-link>, Registered 7 June 2019 (retrospectively registered).<\/jats:p><\/jats:sec>","DOI":"10.3389\/fneur.2023.1307627","type":"journal-article","created":{"date-parts":[[2023,12,14]],"date-time":"2023-12-14T16:49:25Z","timestamp":1702572565000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":11,"title":["The burden of myasthenia gravis \u2013 highlighting the impact on family planning and the role of social support"],"prefix":"10.3389","volume":"14","author":[{"given":"Maike","family":"Stein","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ulrike","family":"Grittner","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":"Sarah","family":"Hoffmann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Meret","family":"Herdick","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Legg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Derin","family":"Marbin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andreas","family":"Meisel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sophie","family":"Lehnerer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2023,12,14]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"30","DOI":"10.1038\/s41572-019-0079-y","article-title":"Myasthenia gravis","volume":"5","author":"Gilhus","year":"2019","journal-title":"Nat Rev Dis Primers"},{"key":"ref2","doi-asserted-by":"publisher","first-page":"114","DOI":"10.1212\/WNL.0000000000011124","article-title":"International consensus guidance for Management of Myasthenia Gravis: 2020 update","volume":"96","author":"Narayanaswami","year":"2021","journal-title":"Neurology"},{"key":"ref3","doi-asserted-by":"publisher","first-page":"49","DOI":"10.1016\/j.zefq.2010.12.002","article-title":"Zertifizierung von Myasthenie-Zentren\u2013Entwicklung und Umsetzung eines Zertifizierungsverfahrens f\u00fcr Patientenorganisationen","volume":"105","author":"Bungard","year":"2011","journal-title":"Z Evid Fortbild Qual Gesundhwes"},{"key":"ref4","doi-asserted-by":"publisher","first-page":"98","DOI":"10.1007\/s00415-009-5279-z","article-title":"The relationship between health, disability and quality of life in myasthenia gravis: results from an Italian study","volume":"257","author":"Leonardi","year":"2010","journal-title":"J Neurol"},{"key":"ref5","doi-asserted-by":"publisher","first-page":"475","DOI":"10.1016\/S1474-4422(09)70063-8","article-title":"Autoimmune myasthenia gravis: emerging clinical and biological heterogeneity","volume":"8","author":"Meriggioli","year":"2009","journal-title":"Lancet Neurol"},{"key":"ref6","first-page":"153","article-title":"Access to and quality of health and social care for rare diseases: patients\u2019 and caregivers\u2019 experiences","volume":"19","author":"Kodra","year":"2007","journal-title":"Ann Ig"},{"key":"ref7","doi-asserted-by":"publisher","first-page":"3050","DOI":"10.1007\/s00415-021-10891-1","article-title":"Burden of disease in myasthenia gravis: taking the patient\u2019s perspective","volume":"269","author":"Lehnerer","year":"2022","journal-title":"J Neurol"},{"key":"ref8","doi-asserted-by":"publisher","first-page":"31","DOI":"10.4103\/sja.SJA_543_18","article-title":"The STROBE guidelines","volume":"13","author":"Cuschieri","year":"2019","journal-title":"Saudi J Anaesth"},{"key":"ref9","doi-asserted-by":"publisher","first-page":"957","DOI":"10.1002\/mus.21053","article-title":"The muscle study group. Less is more, or almost as much: a 15-item quality-of-life instrument for myasthenia gravis","volume":"38","author":"Burns","year":"2008","journal-title":"Muscle Nerve"},{"key":"ref10","doi-asserted-by":"publisher","first-page":"1487","DOI":"10.1212\/WNL.52.7.1487","article-title":"Myasthenia gravis activities of daily living profile","volume":"52","author":"Wolfe","year":"1999","journal-title":"Neurology"},{"key":"ref11","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1016\/S0002-8703(00)90301-6","article-title":"Enhancing recovery in coronary heart disease patients (ENRICHD): study design and methods","volume":"139","year":"2000","journal-title":"Am Heart J"},{"key":"ref12","doi-asserted-by":"publisher","first-page":"99","DOI":"10.1026\/0012-1924\/a000030","article-title":"Eine deutsche adaptation des ENRICHD social support inventory (ESSI): Teststatistische \u00dcberpr\u00fcfung an kardialen Patienten","volume":"57","author":"Kendel","year":"2011","journal-title":"Diagnostica"},{"key":"ref13","doi-asserted-by":"publisher","first-page":"361","DOI":"10.1111\/j.1600-0447.1983.tb09716.x","article-title":"The hospital anxiety and depression scale","volume":"67","author":"Zigmond","year":"1983","journal-title":"Acta Psychiatr Scand"},{"key":"ref14","doi-asserted-by":"publisher","first-page":"69","DOI":"10.1016\/S0022-3999(01)00296-3","article-title":"The validity of the hospital anxiety and depression scale","volume":"52","author":"Bjelland","year":"2002","journal-title":"J Psychosom Res"},{"key":"ref15","article-title":"Hospital anxiety and depression scale\u2014deutsche version","volume-title":"Deutsche adaptation der Hospital anxiety and depression scale (HADS)","author":"Herrmann-Lingen","year":"2010"},{"key":"ref16","volume-title":"Die Umsetzung der Bildungsklassifikation CASMIN f\u00fcr die Volksz\u00e4hlung 1970, die Mikrozensus-Zusatzerhebung 1971 und die Mikrozensen 1976\u20132004","author":"Lechert","year":"2006"},{"key":"ref17","doi-asserted-by":"publisher","first-page":"631","DOI":"10.1007\/s00103-012-1663-4","article-title":"Messung des sozio\u00f6konomischen Status in der Studie zur Gesundheit Erwachsener in Deutschland (DEGS1)","volume":"56","author":"Lampert","year":"2013","journal-title":"Bundesgesundheitsbl"},{"key":"ref18","volume-title":"R: A language and environment for statistical computing","year":"2018"},{"key":"ref19","doi-asserted-by":"publisher","first-page":"11.IT.3.1","DOI":"10.2466\/11.IT.3.1","article-title":"The simple difference formula: an approach to teaching nonparametric correlation. Comprehensive","volume":"3","author":"Kerby","year":"2014","journal-title":"Psychology"},{"key":"ref20","volume-title":"Myasthenia gravis. 4. Aufl","author":"K\u00f6hler","year":"2012"},{"key":"ref21","doi-asserted-by":"publisher","first-page":"e22978","DOI":"10.1097\/MD.0000000000022978","article-title":"Impact of neurological diseases on family planning: a single-center experience","volume":"99","author":"Alanazy","year":"2020","journal-title":"Medicine"},{"key":"ref22","doi-asserted-by":"publisher","first-page":"351","DOI":"10.1177\/1352458512452920","article-title":"Reproductive decision making after the diagnosis of multiple sclerosis (MS)","volume":"19","author":"Alwan","year":"2013","journal-title":"Mult Scler"},{"key":"ref23","doi-asserted-by":"publisher","first-page":"371","DOI":"10.1002\/mus.24556","article-title":"Impact of myasthenia gravis on family planning: how do women with myasthenia gravis decide and why?","volume":"52","author":"Ohlraun","year":"2015","journal-title":"Muscle Nerve"},{"key":"ref24","doi-asserted-by":"publisher","first-page":"E46","DOI":"10.1055\/s-0043-122651","article-title":"Myasthenia gravis: family planning, pregnancy and delivery","volume":"2","author":"Thieme","year":"2018","journal-title":"Neurol Int Open"},{"key":"ref25","doi-asserted-by":"publisher","first-page":"38","DOI":"10.1111\/j.1468-1331.2006.01538.x","article-title":"Myasthenia gravis in pregnancy and birth: identifying risk factors, optimising care","volume":"14","author":"Hoff","year":"2007","journal-title":"Eur J Neurol"},{"key":"ref26","doi-asserted-by":"publisher","first-page":"538","DOI":"10.1136\/jnnp-2013-305572","article-title":"Myasthenia in pregnancy: best practice guidelines from a UK multispecialty working group","volume":"85","author":"Norwood","year":"2014","journal-title":"J Neurol Neurosurg Psychiatry"},{"key":"ref27","doi-asserted-by":"publisher","first-page":"767","DOI":"10.1017\/cjn.2021.2","article-title":"Myasthenia gravis and pregnancy: Toronto specialty center experience","volume":"48","author":"Alharbi","year":"2021","journal-title":"Can J Neurol Sci"},{"key":"ref28","doi-asserted-by":"publisher","first-page":"150","DOI":"10.1016\/j.nmd.2017.11.014","article-title":"MuSK myasthenia gravis and pregnancy","volume":"28","author":"Santos","year":"2018","journal-title":"Neuromuscul Disord"},{"key":"ref29","doi-asserted-by":"publisher","first-page":"21","DOI":"10.1016\/S0301-2115(02)00051-9","article-title":"Myasthenia gravis in pregnancy: report on 69 cases","volume":"104","author":"Djelmis","year":"2002","journal-title":"European J Obstet Gynecol Reproduct Biol"},{"key":"ref30","doi-asserted-by":"publisher","first-page":"956","DOI":"10.1007\/s00115-010-2995-7","article-title":"Verlauf und Behandlung der Myasthenia gravis in der Schwangerschaft","volume":"81","author":"Klehmet","year":"2010","journal-title":"Nervenarzt"},{"key":"ref31","doi-asserted-by":"publisher","first-page":"1362","DOI":"10.1212\/01.WNL.0000082725.21444.EC","article-title":"Myasthenia gravis","volume":"61","author":"Hoff","year":"2003","journal-title":"Neurol Genet"},{"key":"ref32","doi-asserted-by":"publisher","first-page":"4233","DOI":"10.1093\/brain\/awad153","article-title":"The emerging spectrum of foetal acetylcholine receptor antibody-associated disorders (FARAD)","volume":"15","author":"Allen","year":"2023","journal-title":"Brain"},{"key":"ref33","doi-asserted-by":"publisher","first-page":"1402","DOI":"10.1111\/ene.13788","article-title":"Maternal myasthenia gravis represents a risk for the child through autoantibody transfer, immunosuppressive therapy and genetic influence","volume":"25","author":"Gilhus","year":"2018","journal-title":"Eur J Neurol"},{"key":"ref34","doi-asserted-by":"publisher","first-page":"372","DOI":"10.1097\/GRF.0b013e31828e92c0","article-title":"Myasthenia gravis and pregnancy","volume":"56","author":"Varner","year":"2013","journal-title":"Clin Obstet Gynecol"},{"key":"ref35","doi-asserted-by":"publisher","first-page":"169","DOI":"10.1080\/14737175.2023.2178302","article-title":"Treatment considerations in myasthenia gravis for the pregnant patient","volume":"23","author":"Gilhus","year":"2023","journal-title":"Expert Rev Neurother"},{"key":"ref36","doi-asserted-by":"publisher","first-page":"793","DOI":"10.1515\/jpm-2020-0163","article-title":"Maternal and neonatal outcomes among pregnant women with myasthenia gravis","volume":"48","author":"Nicholls-Dempsey","year":"2020","journal-title":"J Perinat Med"},{"key":"ref37","doi-asserted-by":"publisher","first-page":"ene. 16100","DOI":"10.1111\/ene.16100","article-title":"Pregnancy outcomes for women with myasthenia gravis and their newborns: a nationwide register-based cohort study. Euro J of","volume":"16","author":"O\u2019Connor","year":"2023","journal-title":"Neurology"},{"key":"ref38","doi-asserted-by":"publisher","first-page":"52","DOI":"10.1186\/s13023-022-02205-z","article-title":"Risk factors for pregnancy-related clinical outcome in myasthenia gravis: a systemic review and meta-analysis","volume":"17","author":"Su","year":"2022","journal-title":"Orphanet J Rare Dis"},{"key":"ref39","doi-asserted-by":"publisher","first-page":"352","DOI":"10.1016\/j.nmd.2017.01.021","article-title":"Clinical follow-up of pregnancy in myasthenia gravis patients","volume":"27","author":"Ducci","year":"2017","journal-title":"Neuromuscul Disord"},{"key":"ref40","doi-asserted-by":"publisher","first-page":"1261","DOI":"10.1007\/s11845-019-02029-0","article-title":"Myasthenia gravis and pregnancy: retrospective evaluation of 27 pregnancies in a tertiary center and comparison with previous studies","volume":"188","author":"Tanacan","year":"2019","journal-title":"Ir J Med Sci"},{"key":"ref41","doi-asserted-by":"publisher","first-page":"330","DOI":"10.1016\/S0035-3787(06)75019-6","article-title":"Myasth\u00e9nie auto-immune et grossesse: \u00e9volution clinique, accouchement et post-partum","volume":"162","author":"Ramirez","year":"2006","journal-title":"Rev Neurol"},{"key":"ref42","doi-asserted-by":"publisher","first-page":"1658","DOI":"10.1016\/S0140-6736(21)00682-6","article-title":"Miscarriage matters: the epidemiological, physical, psychological, and economic costs of early pregnancy loss","volume":"397","author":"Quenby","year":"2021","journal-title":"Lancet"},{"key":"ref43","doi-asserted-by":"publisher","first-page":"e013278","DOI":"10.1136\/bmjopen-2016-013278","article-title":"Social disadvantages associated with myasthenia gravis and its treatment: a multicentre cross-sectional study","volume":"7","author":"Nagane","year":"2017","journal-title":"BMJ Open"},{"key":"ref44","doi-asserted-by":"publisher","first-page":"167","DOI":"10.1007\/s10072-020-04528-w","article-title":"Social, professional and neuropsychiatric outcomes in patients with myasthenia gravis","volume":"42","author":"Vitturi","year":"2021","journal-title":"Neurol Sci"},{"key":"ref45","doi-asserted-by":"publisher","first-page":"455","DOI":"10.1186\/s12883-022-02981-y","article-title":"Myasthenia gravis \u2013 a retrospective analysis of e-mail inquiries made to a patient organisation and specialized center to uncover unmet needs from patients and caregivers","volume":"22","author":"Stein","year":"2022","journal-title":"BMC Neurol"},{"key":"ref46","doi-asserted-by":"publisher","first-page":"723","DOI":"10.1038\/s41582-022-00735-5","article-title":"Social determinants of health in multiple sclerosis","volume":"18","author":"Dobson","year":"2022","journal-title":"Nat Rev Neurol"}],"container-title":["Frontiers in Neurology"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fneur.2023.1307627\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,12,14]],"date-time":"2023-12-14T16:49:31Z","timestamp":1702572571000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fneur.2023.1307627\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,12,14]]},"references-count":46,"alternative-id":["10.3389\/fneur.2023.1307627"],"URL":"https:\/\/doi.org\/10.3389\/fneur.2023.1307627","relation":{},"ISSN":["1664-2295"],"issn-type":[{"value":"1664-2295","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,12,14]]},"article-number":"1307627"}}