This mixed-methods study included qualitative interviews and a cross-sectional multimodal quantitative survey. The full methodology has been previously published (42). All participants received compensation for their participation in this study, and protocols and materials used in the study received Institutional Review Board approval (IRB#20220823, WCG IRB, Puyallup, WA, USA).

To overcome the inherent challenges of recruiting a diverse cohort of individuals living with gMG in the US, a combination of recruiting strategies was used for both the qualitative and quantitative phases of the study. In addition to partnering with multiple third-party vendors with robust rare disease networks, recruiting strategies also included close collaboration with gMG patient advocacy groups (PAGs; MG Holistic Society and MG Georgia) to extend the reach of recruitment to individuals with gMG who may not be registered in conventional research networks. PAG collaborators were supplied with a simple and illustrative “one-pager” flyer describing the purpose, inclusion criteria, and information about the research, which were shared across wider peer groups of individuals living with gMG (including those residing on social media platforms) to engage potential participants.

To ensure a diverse sample, a screener questionnaire was utilized to implement quotas based on pre-defined SDOH factors including age, gender, racial or ethnic background, employment status, living environment, insurance status, and level of education (Supplementary Table 1). For the qualitative interview phase only, caregivers and PAG representatives with experience caring for or working with individuals in the US living with gMG and SDOH barriers were also recruited using separate inclusion criteria (Supplementary Table 2). Many individuals living with gMG require care and support in their daily living, and PAGs play a robust role in fostering and supporting communities for diagnosed individuals. By incorporating their critical input, we aimed to capture a well-rounded perspective of the impact of SDOH on the experience of individuals living with gMG to inform the survey design and hypotheses.

Double-blinded, 45-min, web-assisted phone interviews were moderated by an academic researcher with expertise in engaging and facilitating conversations around SDOH. In accordance with a discussion guide, interviewees were asked questions regarding their experiences and challenges faced at diagnosis, in treatment decision-making, post-diagnosis, and in accessing support (Supplementary Table 3). Descriptive themes and insights collected from the qualitative interviews were utilized to inform the quantitative survey design.

Survey design was informed by learnings and concepts gathered from the qualitative interviews. The web-based survey consisted of multiple-choice questions spanning a wide range of experiences and perceptions of living with gMG and was designed to be completed in approximately 20 min (Supplementary Table 4). Regarding economic burden, a list of 15 potential concerns related to costs, economic challenges, and accessing care that was compiled based on published literature and interview insights was presented. A subset of these potential concerns included those alluding to direct medical costs (managing funds for emergency care, cost of medications and treatments, cost of medical care), indirect costs (loss of income), and direct non-medical costs (cost of non-medical expenses, cost of accessible transportation, cost of home modifications, cost of professional caregiving, cost of childcare). Respondents were asked to select their degree of concern (major concern, concern, or no concern) for each statement, which were shown in randomized order to minimize bias. The survey and optional telephone assistance were offered in English or Spanish, and caregivers were allowed to assist individuals in completing the survey. De-identified data were aggregated and analyzed for the overall cohort and by SDOH subgroups based on screener data.

A total of 15 individuals participated in the qualitative interviews, of which 11 were individuals living with gMG and SDOH challenges, 2 were caregivers of such individuals, and 2 were gMG PAG representatives experienced in working with diverse gMG communities. In the quantitative phase, a total of 38 individuals living with gMG and SDOH challenges completed the survey. Across both phases, diverse cohorts of individuals living with gMG between the ages of 18 and 75 years across all pre-defined SDOH factors were recruited, with a high proportion using Medicaid, using Medicare, and/or unemployed (Table 1).

Throughout the 15 qualitative interviews conducted with 11 individuals living with gMG and SDOH barriers, 2 caregivers of such individuals, and 2 gMG PAG representatives, compounding economic burden was highlighted for individuals using public insurance, living in non-urban environments, or unemployed. Individuals using Medicaid expressed that their insurance did not always cover certain treatments their physicians recommended and that paying out of pocket for uncovered expenses was challenging. One unemployed individual stated, “I could not work because of my gMG. Trying [to work] was taking a toll on me mentally, and eventually I lost my job that I loved and over $40,000 of income.”

More specifically, challenges in paying for non-medical expenses, including accessible transportation and professional caregiving, were expressed. An individual living in a non-urban environment stated, “The cost of gas going back and forth to go into another town to get [treatment]. It’s a long day and you are exhausted; you need to travel and spend money on getting something to eat… it’s ridiculous.” A caregiver for an individual living with gMG using Medicare stated, “It’s difficult to take Mom on appointments and focus on my work,” illustrating additional caregiver burden.

Additionally, challenges in applying for government assistance were acutely demonstrated by an unemployed individual using Medicare who stated, “I was waiting for disability approval, which took 3 years in economic limbo.” A PAG representative also reinforced access challenges for those living with SDOH barriers, stating, “We try to assist these [individuals] in finding funding and bringing them closer to the assistance programs.” These insights collected from the interviews were utilized to inform the survey design for the quantitative phase.

Five types of economic concerns were highlighted as a major concern by at least 50% of the 38 total respondents participating in the quantitative survey (Figure 1). The most common major concern was managing funds for emergency care (66%), with a total of 95% of respondents concerned to any extent (66% [major concern] + 29% [concern]). Cost of medications and treatments, another direct medical cost, was a major concern for 55% of respondents and a concern to any extent for 76%.

Loss of income, an indirect cost, was the second most common major concern, with a total of 77% concerned to any extent. Additionally, the cost of non-medical expenses was a major concern for 58% of patients, with a larger total of 92% of respondents concerned to any extent. A broader concern of managing everyday finances and budgets was a major concern for 50% of respondents, with 79% concerned to any extent. Among other economic concerns, several other direct non-medical expenses were expressed as a major concern by a subgroup of respondents, including the cost of accessible transportation, home modifications, professional caregiving, and childcare.

To gain better insights into potential SDOH drivers of these common economic challenges, the proportions of respondents in each SDOH subgroup who expressed each statement as a major concern were evaluated. Among each pre-specified SDOH subgroup, variations were observed for most statements (Table 2). For instance, managing funds for emergency care was more commonly a major concern among individuals using Medicaid compared with those using private insurance or Medicare. Across 4 of the economic concerns, particularly pronounced differences were observed between SDOH subgroups, where additional barriers were associated with public insurance (Medicare or Medicaid), non-urban living environments (suburban or rural/small town), and non-employment (not employed or retired; Figure 2).

Our results demonstrated a high degree of concern for both direct (medical and non-medical) and indirect costs among individuals living with gMG and SDOH barriers. The impact of direct costs is not surprising given the high costs associated with gMG globally (11, 14–16, 21, 23, 24, 28, 43). In particular, it was expected that the cost of emergency care would be the most common major economic concern, given the significant increase in costs and healthcare resource utilization associated with myasthenic crises and exacerbation events reported in the US (24). In clinical practice, these serious events are observed more commonly early in the disease course after diagnosis and are often associated with poorly controlled disease. While traditional gMG treatment approaches that focus on achieving good long-term outcomes are important, the potential additional benefits of diagnosing and gaining control of the disease as rapidly as possible should be further studied, as it may help improve short-term outcomes, reduce hospitalizations and associated costs, and alleviate burden of individuals living with gMG.

Notably, loss of income, an indirect cost, was a major driver of economic concerns, with individuals who were not employed/retired reporting pronounced challenges across multiple economic concerns. This is consistent with previous reports associating high burden with loss of employment in individuals living with gMG (10, 44, 45). In a study based in Germany, over 70% of 1,660 survey participants experienced limitations regarding employment due to gMG, with reasons including incapacity to work or recurrent occupational and/or professional disability (10). In Japan, 27.2% of 917 individuals living with gMG experienced unemployment, while 35.9% experienced a decrease in income (46). Similar associations between gMG and employment challenges have been observed in Italy (47), Denmark (32), and Australia (33), with a recent meta-analysis reporting that on a global scale, 50% of individuals living with gMG may be not employed (48). Taken together with our results, further characterizing the impact of indirect costs should be prioritized in gMG. As loss of income may be causal to or exacerbate other economic concerns, it is also imperative to address alternative employment options and solutions for individuals living with gMG, including those living with SDOH barriers.

In addition to individuals who were not employed, pronounced challenges were also observed for individuals using public insurance (Medicaid or Medicare) or living in non-urban environments (suburban or rural/small town). The types of economic concerns that particularly highlighted these differences included direct non-medical costs and applying for government assistance, which was a unique finding given that much of the literature around the economic burden of gMG focuses on direct medical costs associated with treatments and healthcare utilization.

While pronounced economic burden in individuals living with gMG who are not employed can be expected from existing evidence, the compounding challenges associated with certain insurance types and living environments have been much less characterized in gMG. Low income could in part explain pronounced challenges for Medicaid users, while increased comorbidities could contribute to exacerbation of disability-related economic concerns for Medicare users (49, 50). Individuals living in non-urban environments may have poorer access to or longer distances to travel to gMG specialists, treatment centers, institutions to apply for support/assistance programs, and patient communities. To confirm these hypotheses, further research is necessary.

Although the impact of non-medical expenses on economic burden can often be overshadowed by substantial direct medical costs, our study highlights the major day-to-day burden that non-medical costs impose on individuals living with gMG and SDOH barriers. Certain SDOH can act as subtle or “silent” barriers to accessing non-medical resources that are frequently assumed to be utilized by the majority, such as government assistance (51). Proactively addressing such barriers could help begin providing solutions for the wide range of economic concerns we observed in our study, which can potentially also alleviate negative mental health effects (6) and caregiver burden associated with gMG (11, 21).

While the present analysis could guide gMG clinicians to identify specific SDOH risks associated with pronounced economic challenges, many may already be aware of these issues through their day-to-day practice. In fact, in a survey conducted among >1,500 US physicians, financial instability and transportation problems were the top 2 SDOH challenges physicians believed their patients experienced (52). The larger challenge appears to be finding adequate and relevant assistance to address them, as clinicians have limited time and resources to directly support diagnosed individuals beyond the clinical realm. In the same survey, >60% of physicians reported they have little to no time and ability to effectively address SDOH challenges, with >75% expressing inadequateness or lack of accessible community resources and the workforce to direct patients to them as major obstacles (52). Strikingly, only 19% of respondents reported that they had adequate resources in their practice to address SDOH challenges (52). To address these issues, increased involvement of case managers or social workers who not only support hospital discharges and prevention of rehospitalizations but also are knowledgeable about broad and local assistance programs such as transportation, social services, and food banks have been increasingly prioritized in chronic illnesses (53–56). Many of these programs, including Chronic Care Management, have been demonstrated to improve health outcomes while potentially saving costs (53–56). Indeed, better outcomes, including reduced hospital-level resource utilization and costs, have been observed with holistic care management interventions in multiple sclerosis (MS) (57–59) and stroke (60–63). Robust resourcing of case managers and social workers could also allow providers to focus their time on clinical care, further benefiting the healthcare system. However, currently such support is often insufficient or deprioritized for gMG, even at some of the largest healthcare institutions.

Many clinicians have been, and are currently, advocating to improve such on-site support resources for gMG. In addition to financial resources, psychosocial and mental health support is a priority, as individuals diagnosed with gMG face the burden of a lifelong chronic disease, often causing emotional strain, anxiety, and depression that can foster additional barriers to appropriate care, disease management, and survival (47, 64). While little is currently offered at gMG diagnosis at most institutions, long-term psychosocial support, analogous to that offered with cancer diagnoses, can improve outcomes for gMG via an increasingly personalized approach (47, 64). To further accelerate such holistic support in gMG on a broader scale, a large collaborative effort in gMG, modeling historical success and ongoing initiatives in other therapy areas, is needed. First, individuals living with gMG and PAGs should be further empowered to advocate for their needs through increased disease education and closer partnerships (65–67). The active engagement of individuals diagnosed with gMG in their own clinical decision-making processes is highly valuable, and an integral component of the patient-centered care model. To further improve outcomes with personalized care solutions in gMG, diagnosed individuals should be provided the right information, tools, and support to discuss their priorities and concerns with their clinicians, collaborate with appropriate support teams, and feel confident in their treatment and management plans. In addition, settings in which individuals living with gMG, caregivers, clinicians, nurses, PAGs, decisionmakers, and other stakeholders in gMG are able to discuss real-world issues and connect with each other should be implemented in gMG. Although social media networks can be useful for this, amplified voices can often be biased toward strongly negative or positive opinions, missing a large part of the community who may not be active participants. More formal opportunities including regular, large-scale conferences can be highly valuable in identifying actionable needs, leading to successful consensus development as in the case of MS (68, 69). While the Myasthenia Gravis Foundation of America and several similar organizations provide excellent groundwork, the broader gMG community must improve cross-organizational collaborations globally to strengthen the collective voice that has been historically fragmented across the world.

To ultimately improve outcomes for an increasingly diverse population of patients with gMG, current unmet needs must be clearly communicated to decision-makers who influence systematic and institutional resource allocations. In addition to researchers generating critical evidence, a unified voice from the gMG community will be the key to instigating broader-scale changes in gMG support. Such grassroots movements have been successful in other therapy areas such as the MS Brain Health initiative, where structured discussions of a global author group comprising clinicians, researchers, specialist nurses, health economists, and patient group representatives culminated in evidence-based policy recommendations endorsed by over 40 professional MS associations and PAGs (70). While collectively empowering the gMG community to a similar extent may require time and innovative collaboration strategies, accelerating such proactive actions in the gMG community will be a critical next step to significantly impact outcomes for individuals living with gMG sooner, and more comprehensively, than ever before.

Several limitations to our study should be noted. Although our study sample comprised one of the most diverse groups of individuals living with gMG in the US, the cohort size limited the scope of the analysis. For example, while differences observed between subgroups based on level of education and race/ethnicity were unremarkable in the present study, an expanded sample size could uncover additional insights. As the cohort size also limited statistical analyses, results presented in this report reflect descriptive trends, with larger data sets required to generalize any conclusions. Secondly, the screener included questions that were used to classify respondents into pre-defined SDOH subgroups and were not comprehensive. As a result, our findings should not be interpreted to be representative of that of a larger, better characterized population (e.g., while cost of childcare was assessed as a potential concern, whether the respondent was living with a child with childcare needs was unknown). Lastly, time since diagnosis was not captured in the survey to avoid confounding results due to recall bias in self-reporting. Thus, further studies are required to assess the impact of disease characteristics (including duration of disease, severity, etc.) on economic burden among individuals living with gMG and SDOH challenges.