{"id":"https://openalex.org/W7225631502","doi":"https://doi.org/10.6084/m9.figshare.34960495","title":"Disease burden among patients with generalized myasthenia gravis in the United States receiving standard of care therapy: the patient perspective","display_name":"Disease burden among patients with generalized myasthenia gravis in the United States receiving standard of care therapy: the patient perspective","publication_year":2026,"publication_date":"2026-11-09","ids":{"openalex":"https://openalex.org/W7225631502","doi":"https://doi.org/10.6084/m9.figshare.34960495"},"language":"en","primary_location":{"id":"doi:10.6084/m9.figshare.34960495","doi":"https://doi.org/10.6084/m9.figshare.34960495","is_oa":true,"landing_page_url":"https://doi.org/10.6084/m9.figshare.34960495","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":null,"is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"JournalArticle"},"volume":null,"type":"article","is_traditional":true,"indexed_in":["datacite"],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"https://doi.org/10.6084/m9.figshare.34960495","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5089912285","display_name":"Jacqueline A. Pesa","orcid":"https://orcid.org/0000-0002-8335-3009","observed_orcids":["https://orcid.org/0000-0002-8335-3009"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Jacqueline Pesa","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5113401860","display_name":"Louis Jackson","orcid":"https://orcid.org/0009-0008-9547-7501","observed_orcids":["https://orcid.org/0009-0008-9547-7501"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Louis Jackson","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5091786784","display_name":"Alexander Keenan","orcid":"https://orcid.org/0009-0006-4805-7606","observed_orcids":["https://orcid.org/0009-0006-4805-7606"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Alexander Keenan","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5024997953","display_name":"Gregor A. Gibson","orcid":"https://orcid.org/0000-0003-4956-0140","observed_orcids":["https://orcid.org/0000-0003-4956-0140"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Gregor Gibson","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5108898904","display_name":"Hannah Connolly","orcid":"https://orcid.org/0000-0003-4479-1126","observed_orcids":["https://orcid.org/0000-0003-4479-1126"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Hannah Connolly","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5092132045","display_name":"Shiva Lauretta Birija","orcid":"https://orcid.org/0009-0005-4370-0976","observed_orcids":["https://orcid.org/0009-0005-4370-0976"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Shiva Lauretta Birija","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5120687447","display_name":"Beth Poirrette","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Beth Poirrette","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5138338334","display_name":"Amy Foster","orcid":"https://orcid.org/0009-0000-3723-9283","observed_orcids":["https://orcid.org/0009-0000-3723-9283"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Amy Foster","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"last","author":{"id":"https://openalex.org/A5101865867","display_name":"Raghav Govindarajan","orcid":"https://orcid.org/0000-0003-0419-9072","observed_orcids":["https://orcid.org/0000-0003-0419-9072"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Raghav Govindarajan","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]}],"institutions":[],"countries_distinct_count":0,"institutions_distinct_count":0,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":0.0,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":{"value":0.0,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":null,"issue":null,"first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11271","display_name":"Myasthenia Gravis and Thymoma","score":1.0,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"Clinical Neurology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T11271","display_name":"Myasthenia Gravis and Thymoma","score":1.0,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"Clinical Neurology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T11735","display_name":"Peripheral Neuropathies and Disorders","score":0.0,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"Clinical Neurology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T11538","display_name":"Ophthalmology and Eye Disorders","score":0.0,"subfield":{"id":"https://openalex.org/subfields/2731","display_name":"Ophthalmology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/generalized-myasthenia-gravis","display_name":"generalized myasthenia gravis","score":0.9959999918937683},{"id":"https://openalex.org/keywords/disease-burden","display_name":"disease burden","score":0.9980000257492065},{"id":"https://openalex.org/keywords/health-related-quality-of-life","display_name":"health-related quality of life","score":0.9079999923706055},{"id":"https://openalex.org/keywords/mg-adl-score","display_name":"MG-ADL score","score":0.7110000252723694},{"id":"https://openalex.org/keywords/fatigue","display_name":"fatigue","score":0.7059999704360962},{"id":"https://openalex.org/keywords/treatment-satisfaction","display_name":"treatment satisfaction","score":0.7570000290870667},{"id":"https://openalex.org/keywords/disease-severity","display_name":"disease severity","score":0.7160000205039978},{"id":"https://openalex.org/keywords/standard-of-care-therapy","display_name":"standard of care therapy","score":0.746999979019165},{"id":"https://openalex.org/keywords/patient-perspectives","display_name":"patient perspectives","score":0.546999990940094},{"id":"https://openalex.org/keywords/autoimmune-disease","display_name":"autoimmune disease","score":0.3869999945163727}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.9115999937057495},{"id":"https://openalex.org/C2778105408","wikidata":"https://www.wikidata.org/wiki/Q8285","display_name":"Myasthenia gravis","level":2,"score":0.847000002861023},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.6198999881744385},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.46299999952316284},{"id":"https://openalex.org/C30036603","wikidata":"https://www.wikidata.org/wiki/Q17125150","display_name":"Severity of illness","level":2,"score":0.4390000104904175},{"id":"https://openalex.org/C2993769353","wikidata":"https://www.wikidata.org/wiki/Q7598360","display_name":"Standard of care","level":2,"score":0.4343000054359436},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.42719998955726624},{"id":"https://openalex.org/C2780664029","wikidata":"https://www.wikidata.org/wiki/Q5282120","display_name":"Disease burden","level":3,"score":0.3921999931335449},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.3824999928474426},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.3783000111579895},{"id":"https://openalex.org/C195910791","wikidata":"https://www.wikidata.org/wiki/Q1324077","display_name":"Medical record","level":2,"score":0.3409000039100647},{"id":"https://openalex.org/C142052008","wikidata":"https://www.wikidata.org/wiki/Q954027","display_name":"Cross-sectional study","level":2,"score":0.3384000062942505},{"id":"https://openalex.org/C111278954","wikidata":"https://www.wikidata.org/wiki/Q17069312","display_name":"Minimal clinically important difference","level":3,"score":0.3294000029563904},{"id":"https://openalex.org/C2776356578","wikidata":"https://www.wikidata.org/wiki/Q2246789","display_name":"Neuromuscular disease","level":3,"score":0.32269999384880066},{"id":"https://openalex.org/C18747219","wikidata":"https://www.wikidata.org/wiki/Q620994","display_name":"Standard error","level":2,"score":0.31779998540878296},{"id":"https://openalex.org/C79544238","wikidata":"https://www.wikidata.org/wiki/Q423243","display_name":"Activities of daily living","level":2,"score":0.3172000050544739},{"id":"https://openalex.org/C64332521","wikidata":"https://www.wikidata.org/wiki/Q614165","display_name":"Quality-adjusted life year","level":3,"score":0.3068999946117401},{"id":"https://openalex.org/C40993552","wikidata":"https://www.wikidata.org/wiki/Q514654","display_name":"Gold standard (test)","level":2,"score":0.30320000648498535},{"id":"https://openalex.org/C205545832","wikidata":"https://www.wikidata.org/wiki/Q17156455","display_name":"Young adult","level":2,"score":0.29919999837875366},{"id":"https://openalex.org/C2779075594","wikidata":"https://www.wikidata.org/wiki/Q8084905","display_name":"Autoimmune disease","level":3,"score":0.2858000099658966},{"id":"https://openalex.org/C2780640218","wikidata":"https://www.wikidata.org/wiki/Q8277","display_name":"Multiple sclerosis","level":2,"score":0.2639000117778778}],"mesh":[],"locations_count":2,"locations":[{"id":"doi:10.6084/m9.figshare.34960495","doi":"https://doi.org/10.6084/m9.figshare.34960495","is_oa":true,"landing_page_url":"https://doi.org/10.6084/m9.figshare.34960495","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":null,"is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"JournalArticle"},{"id":"doi:10.6084/m9.figshare.34960495.v1","doi":"https://doi.org/10.6084/m9.figshare.34960495.v1","is_oa":true,"landing_page_url":"https://doi.org/10.6084/m9.figshare.34960495.v1","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":null,"is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"JournalArticle"}],"best_oa_location":{"id":"doi:10.6084/m9.figshare.34960495","doi":"https://doi.org/10.6084/m9.figshare.34960495","is_oa":true,"landing_page_url":"https://doi.org/10.6084/m9.figshare.34960495","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":null,"is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"JournalArticle"},"sustainable_development_goals":[{"score":1.0,"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being"}],"study_designs":[{"id":"https://openalex.org/study-designs/observational-study","display_name":"Observational Study"}],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W7135044979","https://openalex.org/W7164139770","https://openalex.org/W7165624923","https://openalex.org/W4379741821","https://openalex.org/W7164149402","https://openalex.org/W2971875744","https://openalex.org/W4315781953","https://openalex.org/W4385230165","https://openalex.org/W4389366125","https://openalex.org/W4380150236"],"abstract_inverted_index":{"Examination":[0],"of":[1,12,51,84,167,190,193,222,232,274,304,345,356,388,435,442],"disease":[2,227,248,347],"burden":[3,228],"experienced":[4],"by":[5,29,198,293],"patients":[6,36,75,107,176,238],"with":[7,10,16,31,49,76,152,175,177,188,215,234,239,295,325,404,415,424],"gMG":[8,80,154,184,216],"treated":[9],"standard":[11,50,221],"care":[13,52,223],"and":[14,101,139,170,201,229,298,348,369,390,410],"not":[15,62,361,438],"advanced":[17,63,364],"biologics":[18,64,365],"can":[19,260,277,308],"inform":[20],"treatment":[21,48,162],"decision-making.":[22],"A":[23],"cross-sectional,":[24],"online":[25,338],"survey":[26,110,375],"was":[27,131,136,143,186,399],"completed":[28,108],"adults":[30],"generalized":[32,326],"myasthenia":[33,265,283,296,327,408,417,425],"gravis":[34,243,297,328,409,426],"(gMG;":[35],"self-reported":[37],"a":[38,181,225,245,391,396],"confirmed":[39],"diagnosis)":[40],"in":[41,211,271,329,427],"the":[42,109,212,255,275,290,318,330,428],"United":[43,213,331,429],"States.":[44],"Patients":[45,151,210],"had":[46,157,353,360,381],"received":[47,148,354,362],"(acetylcholinesterase":[53],"inhibitors,":[54],"non-steroidal":[55],"immunosuppressants,":[56],"corticosteroids,":[57],"rituximab,":[58],"immunoglobulins,":[59],"plasmapheresis)":[60],"but":[61,267,359],"(eculizumab,":[65],"ravulizumab,":[66],"zilucoplan,":[67],"efgartigimod,":[68],"rozanolixizumab,":[69],"nipocalimab).":[70],"Responses":[71],"were":[72,333],"compared":[73,174],"between":[74,98],"mild":[77,178,416],"or":[78,90,406],"moderate/severe":[79,153],"(Myasthenia":[81],"Gravis":[82],"Activites":[83],"Daily":[85],"Living":[86],"[MG-ADL]":[87],"score":[88,100,130,135,142,200],"0\u20134":[89],"5\u201324).":[91],"Linear":[92],"elastic-net":[93],"regression":[94,182],"analysis":[95],"explored":[96],"associations":[97],"MG-ADL":[99,199],"selected":[102],"variables.":[103],"Overall,":[104,146],"157":[105,323],"eligible":[106],"(87.3%":[111],"female,":[112],"mean":[113,119],"[SD]":[114,120],"age":[115],"49.5":[116],"[14.4]":[117],"years,":[118],"time":[121,269],"since":[122],"diagnosis":[123],"11.0":[124],"[10.9]":[125],"years).":[126],"Mean":[127],"(SD)":[128],"MG-QoL-15R":[129],"16.2":[132],"(7.2),":[133],"EQ5D-5L":[134],"0.6":[137],"(0.3),":[138],"FACIT-fatigue":[140],"subscale":[141],"20.2":[144],"(11.3).":[145],"51.6%":[147],"additional":[149],"support/care.":[150],"(136/157":[155],"[86.6%])":[156],"greater":[158,164,171,235],"symptom":[159],"occurence,":[160],"reduced":[161],"satisfaction,":[163],"health-related":[165,191],"quality":[166,192,231,303,387],"life":[168,194],"impairment,":[169],"support/care":[172],"needs,":[173],"gMG.":[179,241],"In":[180,320],"analysis,":[183],"severity":[185,189],"associated":[187],"impairment":[195,236],"(as":[196],"measured":[197],"MG-QOL-15R":[202],"score;":[203],"coefficient":[204],"0.103":[205],"[95%":[206],"CI":[207],"0.043,":[208],"0.191]).":[209],"States":[214,332,430],"who":[217,431],"are":[218,432],"receiving":[219,433,446],"only":[220],"report":[224],"significant":[226],"impaired":[230],"life,":[233,305,389],"among":[237],"severe":[240,407],"Myasthenia":[242],"is":[244,286],"rare":[246],"autoimmune":[247],"that":[249,378,421],"causes":[250],"muscle":[251,384],"weakness.":[252],"At":[253],"first,":[254],"muscles":[256,270],"around":[257],"your":[258],"eyes":[259],"become":[261,279],"weak":[262,280],"(called":[263,281],"\u201cocular":[264],"gravis\u201d)":[266],"over":[268],"other":[272],"parts":[273],"body":[276],"also":[278],"\u201cgeneralized":[282],"gravis\u201d).":[284],"It":[285],"important":[287],"to":[288,311,335],"understand":[289],"symptoms":[291,444],"faced":[292],"people":[294,324,380,403,414,423],"how":[299],"these":[300],"affect":[301],"their":[302,346,349,443],"because":[306],"this":[307,321],"help":[309,316],"physicians":[310],"decide":[312],"which":[313],"treatments":[314,358],"would":[315],"them":[317],"most.":[319],"study,":[322],"asked":[334],"complete":[336],"an":[337],"survey,":[339],"answering":[340],"questions":[341],"about":[342],"different":[343],"aspects":[344],"lived":[350],"experience.":[351],"All":[352],"\u201cstandard":[355,434],"care\u201d":[357,436],"newer,":[363],"called":[366],"complement":[367],"inhibitors":[368],"neonatal":[370],"Fc":[371],"receptor":[372],"blockers.":[373],"The":[374],"responses":[376],"showed":[377],"many":[379],"eye":[382],"symptoms,":[383],"weakness,":[385],"poor":[386],"need":[392],"for":[393,402,413],"support":[394],"from":[395],"relative.":[397],"This":[398,419],"more":[400],"likely":[401,412],"moderate":[405],"less":[411],"gravis.":[418],"means":[420],"some":[422],"do":[437],"have":[439],"good":[440],"control":[441],"despite":[445],"treatment.":[447]},"counts_by_year":[],"updated_date":"2026-11-11T12:16:26.678958","created_date":"2026-11-10T00:00:00"}