Uncontrolled Myasthenia Gravis Can Contribute to Additional Stress Burden and Adverse Mental Health Experiences
Kelly Gwathmey1, Rachelle Rodriguez2, Zia Choudhry2, Louis Jackson2, Wesley Peters3, Gabrielle Geonnotti2, Sindhu Ramchandren2, Maria Ait-Tihyaty2, Neelam Goyal4
1VCU Neuroscience, Orthopedic, and Wellness, 2The Janssen Pharmaceutical Companies of Johnson & Johnson, 3Corevitas, 4Stanford University
Objective:
To investigate potential factors that may contribute to adverse mental health in individuals with generalized myasthenia gravis (gMG).
Background:
Individuals with gMG have higher rates of anxiety and depression compared with the general population (Nadali et al. 2023 Brain Behav;13(1):e2840).
Design/Methods:
Twelve individuals with self-reported gMG diagnosis from a Patient Engagement Research Council (PERC; US-based, diverse in demographics) participated in the first two of three, two-hour, virtual focus groups in February 2023. They described their personal experiences from symptom onset through recent treatments. Transcripts were analyzed to identify stressors affecting mental health.
Results:
All participants described stressors affecting mental health experiences, including nine describing challenges associated with uncontrolled symptoms. These stressors were categorized into four themes: Treatments and Barriers (Healthcare Providers, Insurance, Medications, Other); Activities of Daily Living (Work, Family, Personal Care); Social Support and Loneliness; and Discrimination (Body Type, LGBTQ+, Race/Ethnicity, Other). Stressors generally adversely impacted mental health, though some (e.g., good relationships with healthcare providers) had a positive impact. Specific gMG-related stressors appear to contribute to adverse mental health in individuals with gMG, which in turn can add to or worsen their gMG symptoms. Six individuals referred to the negative impact of stress/emotions on gMG symptoms. Two had experienced depression, five experienced anxiety, and one each experienced trauma, guilt, and controlling emotions. A participant described their experience: “…I would get stressed out and upset when I couldn't do things, …stress makes the myasthenia worse. If I get stressed out, I'm definitely going to get worse [symptomatically]. Try to not get stressed. Have a lot of anxiety.” Seven referred to resilience to the impact of stressors in positive or negative terms (hopefulness versus despair).
Conclusions:
Uncontrolled gMG contributes to the stress and mental health burden that individuals experience. Stressors were related to gMG treatment, activities of daily living, social support, and discrimination.