The rare autoimmune disorder generalized myasthenia gravis can cause muscle weakness in the limbs and face.
Patient support programs (PSPs) for individuals with generalized myasthenia gravis (gMG) ought to use a targeted approach to provide services to those experiencing social determinants of health (SDOH) barriers, new survey results suggest. This is especially true for populations who are harder to reach populations, authors noted.
Findings were published in Frontiers in Public Health.
The rare autoimmune disorder gMG causes patients to experience debilitating muscle weakness, the researchers explained. It is most common in women younger than age 40 and men older than age 60 and affects over 50,000 Americans.
Although treatments to manage gMG can be effective, up to 20% of patients with gMG will experience a myasthenic crisis that requires intensive care and respiratory support. In addition, common conditions like diabetes and hypertension can compound the symptoms of gMG.
“Critically, a major knowledge gap exists in understanding the burden and impact SDOH, defined as nonmedical, nonbiological, and nongenetic factors of the environment or individuals’ lives that affect health, functioning, and HRQOL [health-related quality of life] outcomes—including conditions in which people are born, grow, work, live, and age—in gMG,” the authors wrote.
They carried out a sequential mixed-methods study to better understand how SDOH barriers affect patients with diverse backgrounds. Specifically, they wanted to assess patients during 4 phases of the disease: diagnosis, treatment access, treatment initiation, and treatment continuation.
Fifteen individuals completed a double-blind qualitative web-assisted phone interview that lasted 45 minutes. Most participants were people of color, were unemployed, had a low income, and were enrolled in public insurance. Eleven participants were patients, 2 were caregivers, and 2 were representatives of PSPs.
Among those living with the condition and experiencing SDOH barriers, financial and mental health concerns were the most reported throughout all disease phases. Participants also reported experiencing barriers like navigating insurance coverage and maintaining a job during their diagnosis and treatment of the disease.
“Awareness and utilization of existing support services were low, especially when accessing treatment,” the authors wrote.
“Educational, financial, and personalized support with high ‘human touch’ were commonly perceived as the most valuable resources,” they added.
Participants also held nurse case managers in high regard, as these individuals can assist with disease education and tracking symptoms. However, utilization of these services was low.
Thirty-eight individuals completed a quantitative survey. Seventy-six percent of these patients reported issues making ends meet at the end of each month. Half also expressed concerns about stable housing.
Taken together, the researchers suggest underrepresented communities with gMG should undergo mental health monitoring on a consistent basis. In addition, more research should be carried out to explore and address the potential systemic barriers to access to care in this population. They also suggest efforts to boost awareness and utilization of existing support services can be useful for these patients, along with disseminating high-quality educational resources using a multichannel approach.
Findings of the current study may only apply to the general population of patients living with gMG, marking a limitation. The researchers also mainly used web-based data collection, which may have introduced bias for digital literacy.
“To improve the experiences of historically marginalized individuals in the health care system, the larger gMG support network should continue to spotlight these communities to work together to provide further evolved customized and localized support focused on the specific needs of these communities,” the authors concluded.
Hughes T, Anderson AEL, Habib AA, et al. Impact of social determinants of health on individuals living with generalized myasthenia gravis and implications for patient support programs. Front Public Health. Published online May 19, 2023. doi:10.3389/fpubh.2023.1147489