Mental Health Experiences and Challenges Among Individuals with Myasthenia Gravis: Insights from Patient-Centered, Qualitative Analyses.

Abstract

Introduction: Historically, anxiety and depression rates have been higher among individuals with myasthenia gravis (MG) than the general population, and self-reported sentiments and experiences of mental health impairment may be more common than formal diagnoses. Patient-centered research can provide insight into self-described anxiety and depressive symptoms and stressors experienced by those with MG in the United States (US) and improve understanding of the current prevalence of anxiety and depression.

Methods: Insights were collected from three sources. First, a literature review of quantitative and/or real-world studies of anxiety/depression among individuals with gMG in the US. Second, a secondary, qualitative analysis of the transcripts from focus groups conducted with 12 individuals with self-reported generalized MG. Third, analysis of thousands of online conversations between people with self-reported ocular or generalized MG using search, data extraction, and artificial intelligence-powered algorithms. No statistical analyses were performed.

Results: The literature review identified three studies (precluding a meta-analysis): prevalence estimates for depression were 19% (diagnosed), 31% (receiving antidepressants), and 75% (self-reported sentiments), and for anxiety were 17%, 19% (both diagnosed), and 82% (self-reported sentiments). Unique stressors and triggers were identified, classified into four categories: experience of symptoms/uncontrolled symptoms; burden of medical care; daily life functioning, responsibilities, and aspirations; and social support needs. The relative prominence of each stressor and its induced emotion varied by stage in the disease journey: fear and anxiety were discussed more frequently prior to MG diagnosis, whereas hopelessness and depression became more prominent later, during ongoing disease monitoring and management. Patients felt that stress worsened symptoms in a positive feedback loop.

Conclusion: This qualitative, hypothesis-generating study found that individuals with MG in the US were more likely to report experiencing anxiety and depression than the general population due, at least in part, to their MG-specific disease journey and the uncontrolled symptoms experienced.