{"id":"https://openalex.org/W3205344962","doi":"https://doi.org/10.1002/mus.27443","title":"Identifying a patient\u2010centered outcome measure for a comparative effectiveness treatment trial in myasthenia gravis","display_name":"Identifying a patient\u2010centered outcome measure for a comparative effectiveness treatment trial in myasthenia gravis","publication_year":2021,"publication_date":"2021-10-23","ids":{"openalex":"https://openalex.org/W3205344962","doi":"https://doi.org/10.1002/mus.27443","mag":"3205344962","pmid":"https://pubmed.ncbi.nlm.nih.gov/34687458"},"language":"en","primary_location":{"id":"doi:10.1002/mus.27443","doi":"https://doi.org/10.1002/mus.27443","is_oa":false,"landing_page_url":"https://doi.org/10.1002/mus.27443","pdf_url":null,"source":{"id":"https://openalex.org/S173274907","display_name":"Muscle & Nerve","issn_l":"0148-639X","issn":["0148-639X","1097-4598"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","russia-white-list-2","vabb-shw"],"host_organization":"https://openalex.org/P4310320595","host_organization_name":"Wiley","host_organization_lineage":["https://openalex.org/P4310320595"],"host_organization_lineage_names":["Wiley"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Muscle &amp; Nerve","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5028663301","display_name":"Pushpa Narayanaswami","orcid":"https://orcid.org/0000-0002-9412-7349","observed_orcids":["https://orcid.org/0000-0002-9412-7349"]},"institutions":[{"id":"https://openalex.org/I1316535847","display_name":"Beth Israel Deaconess Medical Center","ror":"https://ror.org/04drvxt59","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1316535847"]},{"id":"https://openalex.org/I136199984","display_name":"Harvard University","ror":"https://ror.org/03vek6s52","country_code":"US","type":"education","lineage":["https://openalex.org/I136199984"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Pushpa Narayanaswami","raw_affiliation_strings":["Department of Neurology Beth Israel Deaconess Medical Center/Harvard Medical School  Boston Massachusetts USA"],"raw_orcid":"https://orcid.org/0000-0002-9412-7349","affiliations":[{"raw_affiliation_string":"Department of Neurology Beth Israel Deaconess Medical Center/Harvard Medical School  Boston Massachusetts USA","institution_ids":["https://openalex.org/I1316535847","https://openalex.org/I136199984"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5103069372","display_name":"Donald B. Sanders","orcid":"https://orcid.org/0000-0003-2320-4965","observed_orcids":["https://orcid.org/0000-0003-2320-4965"]},"institutions":[{"id":"https://openalex.org/I4210126298","display_name":"Duke Medical Center","ror":"https://ror.org/03njmea73","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I4210126298","https://openalex.org/I4210144876"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Donald B. Sanders","raw_affiliation_strings":["Department of Neurology Duke University Medical Center  Durham North Carolina USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology Duke University Medical Center  Durham North Carolina USA","institution_ids":["https://openalex.org/I4210126298"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5059606690","display_name":"Kathie Bibeau","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4210157017","display_name":"Myasthenia Gravis Foundation of America","ror":"https://ror.org/05czgp859","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I4210157017"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Kathie Bibeau","raw_affiliation_strings":["Myasthenia Gravis Foundation of America  Seattle Washington USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Myasthenia Gravis Foundation of America  Seattle Washington USA","institution_ids":["https://openalex.org/I4210157017"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5112439408","display_name":"Andrew Krueger","orcid":"https://orcid.org/0000-0003-3938-6003","observed_orcids":["https://orcid.org/0000-0003-3938-6003"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Andrew Krueger","raw_affiliation_strings":["Accordant Health Services  Greensboro North Carolina USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Accordant Health Services  Greensboro North Carolina USA","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5030037733","display_name":"J\u00fcrgen Venitz","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I184840846","display_name":"Virginia Commonwealth University","ror":"https://ror.org/02nkdxk79","country_code":"US","type":"education","lineage":["https://openalex.org/I184840846"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Jurgen Venitz","raw_affiliation_strings":["Department of Pharmaceutics Virginia Commonwealth University School of Pharmacy  Richmond Virginia USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pharmaceutics Virginia Commonwealth University School of Pharmacy  Richmond Virginia USA","institution_ids":["https://openalex.org/I184840846"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5049165680","display_name":"Jeffrey T. Guptill","orcid":"https://orcid.org/0000-0002-0312-0716","observed_orcids":["https://orcid.org/0000-0002-0312-0716"]},"institutions":[{"id":"https://openalex.org/I4210126298","display_name":"Duke Medical Center","ror":"https://ror.org/03njmea73","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I4210126298","https://openalex.org/I4210144876"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Jeffrey T. Guptill","raw_affiliation_strings":["Department of Neurology Duke University Medical Center  Durham North Carolina USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Neurology Duke University Medical Center  Durham North Carolina USA","institution_ids":["https://openalex.org/I4210126298"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":5,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":{"value":3750,"currency":"USD","value_usd":3750},"apc_paid":null,"fwci":0.8382,"has_fulltext":false,"cited_by_count":11,"citation_normalized_percentile":{"value":0.75124826,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":89,"max":98},"biblio":{"volume":"65","issue":"1","first_page":"75","last_page":"81"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11271","display_name":"Myasthenia Gravis and Thymoma","score":0.9994999766349792,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"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":0.9994999766349792,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"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/T10804","display_name":"Health Systems, Economic Evaluations, Quality of Life","score":9.999999747378752e-05,"subfield":{"id":"https://openalex.org/subfields/2002","display_name":"Economics and Econometrics"},"field":{"id":"https://openalex.org/fields/20","display_name":"Economics, Econometrics and Finance"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T12400","display_name":"Neurogenetic and Muscular Disorders Research","score":0.0,"subfield":{"id":"https://openalex.org/subfields/2716","display_name":"Genetics"},"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/myasthenia-gravis","display_name":"myasthenia gravis","score":1.0},{"id":"https://openalex.org/keywords/patient-centered-outcome-measures","display_name":"patient-centered outcome measures","score":0.8790000081062317},{"id":"https://openalex.org/keywords/patient-reported-outcome-measures","display_name":"patient-reported outcome measures","score":0.781000018119812},{"id":"https://openalex.org/keywords/comparative-effectiveness","display_name":"comparative effectiveness","score":0.6290000081062317},{"id":"https://openalex.org/keywords/quality-of-life","display_name":"quality of life","score":0.8769999742507935},{"id":"https://openalex.org/keywords/treatment-side-effects","display_name":"treatment side effects","score":0.7950000166893005},{"id":"https://openalex.org/keywords/hospitalization-avoidance","display_name":"hospitalization avoidance","score":0.7089999914169312},{"id":"https://openalex.org/keywords/fatigue","display_name":"fatigue","score":0.6589999794960022},{"id":"https://openalex.org/keywords/limb-weakness","display_name":"limb weakness","score":0.7860000133514404},{"id":"https://openalex.org/keywords/patient-input","display_name":"patient input","score":0.5479999780654907}],"concepts":[{"id":"https://openalex.org/C2778105408","wikidata":"https://www.wikidata.org/wiki/Q8285","display_name":"Myasthenia gravis","level":2,"score":0.8480887413024902},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.8028688430786133},{"id":"https://openalex.org/C2779343474","wikidata":"https://www.wikidata.org/wiki/Q3109175","display_name":"Context (archaeology)","level":2,"score":0.6971810460090637},{"id":"https://openalex.org/C197934379","wikidata":"https://www.wikidata.org/wiki/Q2047938","display_name":"Adverse effect","level":2,"score":0.5893397331237793},{"id":"https://openalex.org/C2780247198","wikidata":"https://www.wikidata.org/wiki/Q633403","display_name":"Weakness","level":2,"score":0.5848779678344727},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.5654665231704712},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.5521133542060852},{"id":"https://openalex.org/C2780733359","wikidata":"https://www.wikidata.org/wiki/Q331769","display_name":"Mood","level":2,"score":0.4851606488227844},{"id":"https://openalex.org/C2779517570","wikidata":"https://www.wikidata.org/wiki/Q7144954","display_name":"Patient-reported outcome","level":3,"score":0.4769507944583893},{"id":"https://openalex.org/C168563851","wikidata":"https://www.wikidata.org/wiki/Q1436668","display_name":"Randomized controlled trial","level":2,"score":0.4180566668510437},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.35661619901657104},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.2762334942817688},{"id":"https://openalex.org/C141071460","wikidata":"https://www.wikidata.org/wiki/Q40821","display_name":"Surgery","level":1,"score":0.2174752950668335},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.1073918342590332},{"id":"https://openalex.org/C86803240","wikidata":"https://www.wikidata.org/wiki/Q420","display_name":"Biology","level":0,"score":0.0},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.0},{"id":"https://openalex.org/C151730666","wikidata":"https://www.wikidata.org/wiki/Q7205","display_name":"Paleontology","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D002986","descriptor_name":"Clinical Trials as Topic","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D009157","descriptor_name":"Myasthenia Gravis","qualifier_ui":"Q000175","qualifier_name":"diagnosis","is_major_topic":true},{"descriptor_ui":"D009157","descriptor_name":"Myasthenia Gravis","qualifier_ui":"Q000188","qualifier_name":"drug therapy","is_major_topic":true},{"descriptor_ui":"D011788","descriptor_name":"Quality of Life","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D016896","descriptor_name":"Treatment Outcome","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D017063","descriptor_name":"Outcome Assessment, Health Care","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D018802","descriptor_name":"Patient-Centered Care","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false}],"locations_count":2,"locations":[{"id":"doi:10.1002/mus.27443","doi":"https://doi.org/10.1002/mus.27443","is_oa":false,"landing_page_url":"https://doi.org/10.1002/mus.27443","pdf_url":null,"source":{"id":"https://openalex.org/S173274907","display_name":"Muscle & Nerve","issn_l":"0148-639X","issn":["0148-639X","1097-4598"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","russia-white-list-2","vabb-shw"],"host_organization":"https://openalex.org/P4310320595","host_organization_name":"Wiley","host_organization_lineage":["https://openalex.org/P4310320595"],"host_organization_lineage_names":["Wiley"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Muscle &amp; Nerve","raw_type":"journal-article"},{"id":"pmid:34687458","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/34687458","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Muscle & nerve","raw_type":"Journal Article"}],"best_oa_location":null,"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","score":1.0,"display_name":"Good health and well-being"}],"sustainable_development_goals_aurora":[],"study_designs":[],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":11,"referenced_works":["https://openalex.org/W1981598898","https://openalex.org/W2042083490","https://openalex.org/W2089382792","https://openalex.org/W2108746981","https://openalex.org/W2135001286","https://openalex.org/W2137544340","https://openalex.org/W2461303519","https://openalex.org/W2473388648","https://openalex.org/W2588348364","https://openalex.org/W2790947453","https://openalex.org/W2932631983"],"related_works":["https://openalex.org/W3209358960","https://openalex.org/W4389409945","https://openalex.org/W153644616","https://openalex.org/W2158750300","https://openalex.org/W2466693346","https://openalex.org/W7138971595","https://openalex.org/W1974993455","https://openalex.org/W2031314236","https://openalex.org/W3118199047","https://openalex.org/W4376131314"],"abstract_inverted_index":{"INTRODUCTION/AIMS:":[0],"Data":[1],"regarding":[2],"the":[3,47,51,59,90,118,132,151,184,202,230],"comparative":[4,28],"effectiveness":[5,29],"of":[6,31,50,55,61,75,150,189,225,232],"myasthenia":[7],"gravis":[8],"(MG)":[9],"treatments":[10,66],"is":[11],"not":[12],"available.":[13],"We":[14],"used":[15],"patient":[16,48,111,182],"input":[17],"to":[18,41,97,212],"identify":[19],"a":[20,27,36,83,193,226,233,242],"patient-centered":[21],"outcome":[22,85,196,221],"measure":[23,86,197],"(PCOM)":[24],"for":[25,205,239,244],"PROMISE-MG,":[26],"trial":[30],"MG":[32,45,65,79],"treatments.":[33],"METHODS:":[34],"First,":[35],"questionnaire":[37],"survey":[38,112],"was":[39,80,87,93,140,199],"administered":[40],"58":[42],"people":[43],"with":[44,78,107],"at":[46],"meeting":[49],"Myasthenia":[52,186],"Gravis":[53,187],"Foundation":[54],"America":[56],"(MGFA),":[57],"evaluating":[58],"impact":[60,120],"MG-related":[62],"symptoms":[63,154],"and":[64,101,129,155,173,209],"on":[67,121,181,229],"patients'":[68,122],"lives.":[69,123],"Second,":[70],"an":[71,163,174],"online":[72],"focus":[73],"group":[74,144],"13":[76],"patients":[77,96],"conducted.":[81],"Third,":[82],"potential":[84],"selected.":[88],"Fourth,":[89],"selected":[91,200,218],"PCOM":[92,204,243],"evaluated":[94,238],"by":[95],"assess":[98],"how":[99],"completely":[100],"accurately":[102],"it":[103,157],"captured":[104],"their":[105],"experiences":[106],"MG.":[108],"RESULTS:":[109],"The":[110,223],"showed":[113],"that":[114],"limb":[115],"weakness":[116],"had":[117],"most":[119,133,152],"Weight":[124],"gain,":[125],"mood":[126],"swings,":[127],"insomnia,":[128],"diarrhea":[130],"were":[131,217],"bothersome":[134,153],"treatment":[135,165,214],"side":[136,171],"effects.":[137],"Avoiding":[138,207],"hospitalization":[139,208],"very":[141],"important.":[142],"Focus":[143],"participants":[145],"reported":[146],"fatigue":[147],"as":[148,166,201,219,241],"one":[149],"differentiated":[156],"from":[158],"myasthenic":[159],"weakness.":[160],"They":[161],"defined":[162],"ideal":[164],"having":[167,210],"minimal":[168,211],"or":[169],"no":[170,213],"effects":[172,216],"80%":[175],"improvement":[176],"in":[177],"symptoms.":[178],"DISCUSSION:":[179],"Based":[180],"input,":[183],"15-item":[185],"Quality":[188],"Life-Revised":[190],"(MG-QOL15R)":[191],"scale,":[192],"validated":[194],"patient-reported":[195],"(PRO),":[198],"primary":[203],"PROMISE-MG.":[206],"adverse":[215],"additional":[220],"measures.":[222],"patient-centeredness":[224],"PRO":[227],"depends":[228],"context":[231],"study:":[234],"PROs":[235],"should":[236],"be":[237],"appropriateness":[240],"every":[245],"study.":[246]},"counts_by_year":[{"year":2025,"cited_by_count":4},{"year":2024,"cited_by_count":5},{"year":2023,"cited_by_count":1},{"year":2022,"cited_by_count":1}],"updated_date":"2026-10-31T12:09:11.096373","created_date":"2021-10-25T00:00:00"}
