{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,15]],"date-time":"2026-07-15T22:35:03Z","timestamp":1784154903328,"version":"3.55.0"},"reference-count":56,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2023,5,19]],"date-time":"2023-05-19T00:00:00Z","timestamp":1684454400000},"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. Public Health"],"abstract":"<jats:sec><jats:title>Introduction<\/jats:title><jats:p>Social determinants of health (SDOH) are important contributors to health outcomes, and better understanding their impact on individuals diagnosed with rare, chronic diseases with high burden and unmet need is critical. Characterizing SDOH burden can help improve the design of patient support programs (PSPs), using targeted approaches to remove barriers to access.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>This study used a mixed-methods strategy employing a quantitative survey, which was designed based on qualitative interviews, to understand the unmet needs and awareness\/utilization of PSPs among individuals living with generalized myasthenia gravis (gMG) and experiencing SDOH barriers. The survey was completed by 38 individuals living with gMG, of which the majority were non-White\/Caucasian, unemployed, low income, and enrolled in public insurance. Common SDOH challenges, awareness\/utilization of available PSPs, and unmet needs were identified.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Financial and mental health concerns were the most common among individuals living with gMG and experiencing SDOH barriers throughout diagnosis, accessing treatment, initiating treatment, and continuing treatment. Awareness and utilization of existing support services were low, especially when accessing treatment. Educational, financial, and personalized support with high \u201chuman touch\u201d were commonly perceived as the most valuable resources.<\/jats:p><\/jats:sec><jats:sec><jats:title>Implications<\/jats:title><jats:p>To better serve the needs of individuals with gMG experiencing SDOH barriers, PSPs should use a targeted approach to offer services tailored to harder-to-reach populations. Further, providers, advocacy groups, manufacturers, and public organizations in the gMG ecosystem should strengthen collaborations with PSPs to enable individuals living with gMG to access the services they need to improve their health outcomes.<\/jats:p><\/jats:sec>","DOI":"10.3389\/fpubh.2023.1147489","type":"journal-article","created":{"date-parts":[[2023,5,19]],"date-time":"2023-05-19T06:03:16Z","timestamp":1684476196000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":11,"title":["Impact of social determinants of health on individuals living with generalized myasthenia gravis and implications for patient support programs"],"prefix":"10.3389","volume":"11","author":[{"given":"Tom","family":"Hughes","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ashley E. L.","family":"Anderson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ali A.","family":"Habib","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathy","family":"Perez","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cathleen","family":"Bergin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sharon","family":"Suchotliff","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cecilia","family":"Zvosec","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dajzsa","family":"McDaniel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mai","family":"Sato","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Albert","family":"Whangbo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Glenn","family":"Phillips","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2023,5,19]]},"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":"604","DOI":"10.3389\/fneur.2020.00604","article-title":"A practical approach to managing patients with myasthenia gravis\u2014opinions and a review of the literature","volume":"11","author":"Farrugia","year":"2020","journal-title":"Front Neurol"},{"key":"ref3","doi-asserted-by":"publisher","first-page":"e048198","DOI":"10.1136\/bmjopen-2020-048198","article-title":"Patient-reported impact of myasthenia gravis in the real world: protocol for a digital observational study (MyRealWorld MG)","volume":"11","author":"Berrih-Aknin","year":"2021","journal-title":"BMJ Open"},{"key":"ref4","article-title":"Clinical overview of MG","year":"2015"},{"key":"ref5","doi-asserted-by":"publisher","first-page":"120268","DOI":"10.1016\/j.jns.2022.120268","article-title":"The humanistic burden of myasthenia gravis: a systematic literature review","volume":"437","author":"Gelinas","year":"2022","journal-title":"J Neurol Sci"},{"key":"ref6","doi-asserted-by":"publisher","first-page":"7","DOI":"10.25122\/jml-2020-0145","article-title":"The epidemiology of myasthenia gravis","volume":"14","author":"Bubuioc","year":"2021","journal-title":"J Med Life"},{"key":"ref7","doi-asserted-by":"publisher","first-page":"419","DOI":"10.1212\/wnl.0000000000002790","article-title":"International consensus guidance for management of myasthenia gravis: executive summary","volume":"87","author":"Sanders","year":"2016","journal-title":"Neurology"},{"key":"ref8","doi-asserted-by":"publisher","first-page":"172","DOI":"10.1186\/s12883-022-02692-4","article-title":"A retrospective longitudinal cohort study of the clinical burden in myasthenia gravis","volume":"22","author":"Harris","year":"2022","journal-title":"BMC Neurol"},{"key":"ref9","doi-asserted-by":"publisher","first-page":"1535","DOI":"10.1007\/s40120-022-00383-3","article-title":"Physician-reported perspectives on myasthenia gravis in the United States: a real-world survey","volume":"11","author":"Mahic","year":"2022","journal-title":"Neurol Ther"},{"key":"ref10","doi-asserted-by":"publisher","first-page":"1253","DOI":"10.1212\/wnl.48.5.1253","article-title":"Myasthenic crisis: clinical features, mortality, complications, and risk factors for prolonged intubation","volume":"48","author":"Thomas","year":"1997","journal-title":"Neurology"},{"key":"ref11","article-title":"The cost to patients and the community of myasthenia gravis: understanding the patient experience and community wide impact","year":"2013"},{"key":"ref12","doi-asserted-by":"publisher","first-page":"59","DOI":"10.1007\/s13760-019-01102-w","article-title":"A study of comorbidities in myasthenia gravis","volume":"120","author":"Misra","year":"2020","journal-title":"Acta Neurol Belg"},{"key":"ref13","doi-asserted-by":"publisher","first-page":"e9184","DOI":"10.7759\/cureus.9184","article-title":"A review of psychiatric comorbidity in myasthenia gravis","volume":"12","author":"Law","year":"2020","journal-title":"Cureus"},{"key":"ref14","doi-asserted-by":"publisher","first-page":"129","DOI":"10.1186\/1477-7525-8-129","article-title":"Quality of life and life circumstances in German myasthenia gravis patients","volume":"8","author":"Twork","year":"2010","journal-title":"Health Qual Life Outcomes"},{"key":"ref15","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":"2021","journal-title":"J Neurol"},{"key":"ref16","doi-asserted-by":"publisher","first-page":"907","DOI":"10.1002\/mus.22212","article-title":"Cost analysis of myasthenia gravis from a large US insurance database","volume":"44","author":"Guptill","year":"2011","journal-title":"Muscle Nerve"},{"key":"ref17","doi-asserted-by":"publisher","first-page":"809999","DOI":"10.3389\/fneur.2021.809999","article-title":"Real-world healthcare resource utilization and cost burden assessment for adults with generalized myasthenia gravis in the United States","volume":"12","author":"Phillips","year":"2021","journal-title":"Front Neurol"},{"key":"ref18","doi-asserted-by":"publisher","first-page":"822909","DOI":"10.3389\/fpubh.2022.822909","article-title":"Socio-economic burden of myasthenia gravis: a cost-of-illness study in Bulgaria","volume":"10","author":"Ignatova","year":"2022","journal-title":"Front Public Health"},{"key":"ref19","doi-asserted-by":"publisher","first-page":"715","DOI":"10.1007\/s40273-020-00912-8","article-title":"Economic costs of myasthenia gravis: a systematic review","volume":"38","author":"Landfeldt","year":"2020","journal-title":"PharmacoEconomics"},{"key":"ref20","doi-asserted-by":"publisher","first-page":"545","DOI":"10.1097\/WCO.0000000000000858","article-title":"Progress in the therapy of myasthenia gravis: getting closer to effective targeted immunotherapies","volume":"33","author":"Dalakas","year":"2020","journal-title":"Curr Opin Neurol"},{"key":"ref21","doi-asserted-by":"publisher","first-page":"976","DOI":"10.1016\/s1474-4422(17)30369-1","article-title":"Safety and efficacy of eculizumab in anti-acetylcholine receptor antibody-positive refractory generalised myasthenia gravis (REGAIN): a phase 3, randomised, double-blind, placebo-controlled, multicentre study","volume":"16","author":"Howard","year":"2017","journal-title":"Lancet Neurol"},{"key":"ref22","doi-asserted-by":"publisher","first-page":"691","DOI":"10.1080\/1744666X.2022.2082946","article-title":"Role of complement, anti-complement therapeutics, and other targeted immunotherapies in myasthenia gravis","volume":"18","author":"Dalakas","year":"2022","journal-title":"Expert Rev Clin Immunol"},{"key":"ref23","doi-asserted-by":"publisher","first-page":"341","DOI":"10.1007\/s40265-022-01678-3","article-title":"Efgartigimod: first approval","volume":"82","author":"Heo","year":"2022","journal-title":"Drugs"},{"key":"ref24","doi-asserted-by":"publisher","first-page":"526","DOI":"10.1016\/s1474-4422(21)00159-9","article-title":"Safety, efficacy, and tolerability of efgartigimod in patients with generalised myasthenia gravis (ADAPT): a multicentre, randomised, placebo-controlled, phase 3 trial","volume":"20","author":"Howard","year":"2021","journal-title":"Lancet Neurol"},{"key":"ref25","doi-asserted-by":"publisher","first-page":"17562864211065406","DOI":"10.1177\/17562864211065406","article-title":"Advances and challenges in the treatment of myasthenia gravis","volume":"14","author":"Schneider-Gold","year":"2021","journal-title":"Ther Adv Neurol Disord"},{"key":"ref26","article-title":"Social determinants of health","year":"2022"},{"key":"ref27","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1177\/00333549131286s301","article-title":"From theory to action: applying social determinants of health to public health practice","volume":"128","author":"Dean","year":"2013","journal-title":"Public Health Rep"},{"key":"ref28","doi-asserted-by":"publisher","first-page":"e60","DOI":"10.2105\/ajph.2015.302903","article-title":"Implicit racial\/ethnic bias among health care professionals and its influence on health care outcomes: a systematic review","volume":"105","author":"Hall","year":"2015","journal-title":"Am J Public Health"},{"key":"ref29","doi-asserted-by":"publisher","first-page":"19","DOI":"10.1186\/s12910-017-0179-8","article-title":"Implicit bias in healthcare professionals: a systematic review","volume":"18","author":"FitzGerald","year":"2017","journal-title":"BMC Med Ethics"},{"key":"ref30","doi-asserted-by":"publisher","first-page":"40","DOI":"10.7861\/fhj.2020-0233","article-title":"Implicit bias in healthcare: clinical practice, research and decision making","volume":"8","author":"Gopal","year":"2021","journal-title":"Future Healthc J"},{"key":"ref31","doi-asserted-by":"publisher","first-page":"556","DOI":"10.1182\/blood.2020006252","article-title":"Neighborhood poverty and pediatric allogeneic hematopoietic cell transplantation outcomes: a CIBMTR analysis","volume":"137","author":"Bona","year":"2021","journal-title":"Blood"},{"key":"ref32","doi-asserted-by":"publisher","first-page":"961","DOI":"10.1164\/rccm.201807-1374OC","article-title":"Rural residence and poverty are independent risk factors for chronic obstructive pulmonary disease in the United States","volume":"199","author":"Raju","year":"2019","journal-title":"Am J Respir Crit Care Med"},{"key":"ref33","doi-asserted-by":"publisher","first-page":"553626","DOI":"10.3389\/fneur.2020.553626","article-title":"Determinants of quality of life in myasthenia gravis patients","volume":"11","author":"Szczudlik","year":"2020","journal-title":"Front Neurol"},{"key":"ref34","doi-asserted-by":"publisher","first-page":"380","DOI":"10.1159\/000524733","article-title":"Are there racial differences in inpatient outcomes and treatment utilization following hospitalization for myasthenia gravis exacerbation?","volume":"56","author":"Syed","year":"2022","journal-title":"Neuroepidemiology"},{"key":"ref35","doi-asserted-by":"publisher","first-page":"10","DOI":"10.3390\/jcm10112235","article-title":"Myasthenia gravis: epidemiology, pathophysiology and clinical manifestations","volume":"10","author":"Dresser","year":"2021","journal-title":"J Clin Med"},{"key":"ref36","doi-asserted-by":"publisher","first-page":"197893","DOI":"10.1155\/2015\/197893","article-title":"Gender and ethnicity based differences in clinical and laboratory features of myasthenia gravis","volume":"2015","author":"Abukhalil","year":"2015","journal-title":"Autoimmune Dis"},{"key":"ref37","doi-asserted-by":"publisher","first-page":"328","DOI":"10.1002\/mus.21191","article-title":"Racial differences in myasthenia gravis in Alabama","volume":"39","author":"Oh","year":"2009","journal-title":"Muscle Nerve"},{"key":"ref38","doi-asserted-by":"publisher","first-page":"711","DOI":"10.2147\/ppa.S101175","article-title":"The impact of patient support programs on adherence, clinical, humanistic, and economic patient outcomes: a targeted systematic review","volume":"10","author":"Ganguli","year":"2016","journal-title":"Patient Prefer Adherence"},{"key":"ref39","doi-asserted-by":"publisher","first-page":"148","DOI":"10.1177\/10848223211038305","article-title":"Impact of home care services on patient and economic outcomes: a targeted review","volume":"34","author":"Lizano-D\u00edez","year":"2022","journal-title":"Home Health Care Manag Pract"},{"key":"ref40","doi-asserted-by":"publisher","first-page":"770","DOI":"10.18553\/jmcp.2019.18443","article-title":"Patient support program increased medication adherence with lower total health care costs despite increased drug spending","volume":"25","author":"Brixner","year":"2019","journal-title":"J Manag Care Spec Pharm"},{"key":"ref41","doi-asserted-by":"publisher","first-page":"1103","DOI":"10.1007\/s40120-021-00285-w","article-title":"The lived experience of myasthenia gravis: a patient-led analysis","volume":"10","author":"Law","year":"2021","journal-title":"Neurol Ther"},{"key":"ref42","doi-asserted-by":"publisher","first-page":"223","DOI":"10.1007\/978-90-481-9485-8_14","article-title":"Rare diseases social epidemiology: analysis of inequalities","volume":"686","author":"Kole","year":"2010","journal-title":"Adv Exp Med Biol"},{"key":"ref43","doi-asserted-by":"publisher","first-page":"71","DOI":"10.1186\/s13023-022-02255-3","article-title":"Exploring intersectionality: an international yet individual issue","volume":"17","author":"Alani","year":"2022","journal-title":"Orphanet J Rare Dis"},{"key":"ref44","doi-asserted-by":"publisher","first-page":"1110","DOI":"10.1016\/j.sapharm.2020.08.011","article-title":"Research with youth of color in low-income communities: strategies for recruiting and retaining participants","volume":"17","author":"Mendelson","year":"2021","journal-title":"Res Social Adm Pharm"},{"key":"ref45","year":"2022"},{"key":"ref46","article-title":"Using standardized social determinants of health screening questions to identify and assist patients with unmet health-related resource needs in North Carolina","year":"2018"},{"key":"ref47","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":"ref48","doi-asserted-by":"publisher","first-page":"69","DOI":"10.1002\/mus.26719","article-title":"Severity and depression can impact quality of life in patients with myasthenia gravis","volume":"61","author":"Alanazy","year":"2020","journal-title":"Muscle Nerve"},{"key":"ref49","doi-asserted-by":"publisher","first-page":"1164","DOI":"10.1016\/j.jocn.2015.01.022","article-title":"Clinical features and impact of myasthenia gravis disease in Australian patients","volume":"22","author":"Blum","year":"2015","journal-title":"J Clin Neurosci"},{"key":"ref50","doi-asserted-by":"publisher","first-page":"e0206754","DOI":"10.1371\/journal.pone.0206754","article-title":"Factors associated with quality of life of people with myasthenia gravis","volume":"13","author":"Jeong","year":"2018","journal-title":"PLoS One"},{"key":"ref51","doi-asserted-by":"publisher","first-page":"585","DOI":"10.1188\/12.Onf.585-591","article-title":"Peer-based models of supportive care: the impact of peer support groups in African American breast cancer survivors","volume":"39","author":"Ashing-Giwa","year":"2012","journal-title":"Oncol Nurs Forum"},{"key":"ref52","doi-asserted-by":"publisher","first-page":"17","DOI":"10.3390\/ijerph17249541","article-title":"Results of nurse case Management in Primary Heath Care: bibliographic review","volume":"17","author":"Dom\u00e9nech-Briz","year":"2020","journal-title":"Int J Environ Res Public Health"},{"key":"ref53","doi-asserted-by":"publisher","first-page":"878","DOI":"10.1007\/s11606-014-2814-0","article-title":"Is implementation of the care transitions intervention associated with cost avoidance after hospital discharge?","volume":"29","author":"Gardner","year":"2014","journal-title":"J Gen Intern Med"},{"key":"ref54","doi-asserted-by":"publisher","first-page":"231","DOI":"10.1007\/s10072-009-0194-8","article-title":"Social support and self-efficacy in patients with myasthenia gravis: a common pathway towards positive health outcomes","volume":"31","author":"Raggi","year":"2010","journal-title":"Neurol Sci"},{"key":"ref55","doi-asserted-by":"publisher","first-page":"S235","DOI":"10.1097\/phh.0000000000001424","article-title":"Healthy people 2030 leading health indicators and overall health and well-being measures: opportunities to assess and improve the health and well-being of the nation","volume":"27","author":"Ochiai","year":"2021","journal-title":"J Public Health Manag Pract"},{"key":"ref56","doi-asserted-by":"publisher","first-page":"1860","DOI":"10.1001\/jama.2022.7172","article-title":"More diversity in clinical trials","volume":"327","author":"Rubin","year":"2022","journal-title":"JAMA"}],"container-title":["Frontiers in Public Health"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpubh.2023.1147489\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,5,19]],"date-time":"2023-05-19T06:03:19Z","timestamp":1684476199000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpubh.2023.1147489\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,5,19]]},"references-count":56,"alternative-id":["10.3389\/fpubh.2023.1147489"],"URL":"https:\/\/doi.org\/10.3389\/fpubh.2023.1147489","relation":{},"ISSN":["2296-2565"],"issn-type":[{"value":"2296-2565","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,5,19]]},"article-number":"1147489"}}