According to a new survey on neurologists in the United States, patients with generalized myasthenia gravis (gMG) who faced social determinants of health (SODH) challenges experienced health care access inequities when initiating and continuing treatment for their condition. These findings suggest the need to mitigate treatment-related disparities in gMG by assisting patients with treatment costs, transportation, and in-home infusions, as well as increasing awareness and patient advocacy.1
Among 150 neurologists who completed the survey in October 2022, respondents estimated that 33% of their patients with gMG faced care inequities and 74.7% (n = 112) reported it is more difficult for these patients to afford prescribed gMG therapies. Notably, 67.3% (n = 101) of respondents reported these patients experienced a greater difficulty in continuing gMG treatment and 60.0% (n = 90) noted these patients had a greater likelihood of experiencing exacerbation or crisis-related hospitalization.
Clinical Takeaways
- Patients with generalized myasthenia gravis (gMG) who face social determinants of health challenges are experiencing disparities in accessing and continuing their treatment, according to a survey of US neurologists.
- Key challenges include affordability issues, difficulties in obtaining payor approval, and transportation barriers, highlighting the need for financial assistance and increased awareness in addressing gMG treatment disparities.
- The study calls for proactive measures to mitigate treatment-related inequities in gMG care, such as providing support for treatment costs, transportation, and in-home infusions, as well as increasing patient advocacy and awareness in the healthcare system.
These findings were presented at the American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) meeting, held November 1-4, in Phoenix, Arizona, by senior author A. Gordon Smith, MD, FAAN, professor and chair of neurology, and Kenneth and Dianne Wright Distinguished Chair in clinical and translational research at Virginia Commonwealth University, and colleagues. Investigators conducted a 42-item online survey on healthcare access which was deployed to neurologists using email. The questions centered around demographics, diagnosis, treatment, and continuity of care in patients with gMG that were considered to be facing SDOH challenges. These challenges could pertain to any racial/ethnic minority or financial limitations.
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In comparison with other patients with gMG, respondents viewed patients who faced inequities as less receptive to infusion therapies and thymectomy and were less likely to be presented with newer therapies. In addition, these patients were reportedly less likely to receive payor approval for antibody-based biologics, IVIg, and plasmapheresis, and were more likely to have trouble traveling to infusion centers. The respondents also identified the cost of treatment/insurance and transportation issues as the biggest contributors to the difficulties in obtaining and continuing treatment for gMG.
In an additional analysis presented at AANEM 2023 by the same authors, neurologists reported that patients with gMG who faced SDOH challenges were also more likely to experience healthcare inequities when receiving diagnosis. Flexible scheduling, improved transportation options, and increased primary care education were noted as ways to address these health disparities. Approximately 84% (n = 126) of the respondents were board certified in neurology and the remainder were in neuromuscular or electrodiagnostic medicine, roughly half were university affiliated.2
About 55% of respondents (n = 82) indicated the patients who faced health inequalities also experienced longer duration between symptom onset and gMG diagnosis and 56% had a higher likelihood of diagnosis in an inpatient setting (n = 84). Similarly, 55.3% (n = 83) reported these patients had more difficulty scheduling appointments and 76.7% (n = 115) reported these patients had more difficulty attending appointments. Additionally, 72.7% (n = 109) reported these patients missed more appointments. The neurologists from the survey suggested that these disparities were because of treatment cost, challenges with appointments, transportation difficulties, being less likely to seek care, and more likely to visit an emergency room as the disease progressed.
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REFERENCES
1. Wright N, Gelinas D, Nisbet P, et al. Treatment-Related Inequities in Patients With Generalized Myasthenia Gravis Facing Social Determinants of Health Challenges: A Survey of Neurologists in the United States. Presented at: American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) meeting; November 1-4, 2023; Phoenix, AZ. Abstract 139.
2. Wright N, Gelinas D, Nisbet P, et al. Diagnosis Inequities In Patients With Generalized Myasthenia Gravis Facing Social Determinants Of Health Challenges: A Survey Of Neurologists In The United States.Presented at: American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) meeting; November 1-4, 2023; Phoenix, AZ. Abstract 138.
