Abstract Details

Title Uncontrolled Myasthenia Gravis Can Contribute to Additional Stress Burden and Adverse Mental Health Experiences

Topic Neuromuscular and Clinical Neurophysiology (EMG)

Presentation(s) P4 - Poster Session 4 (11:45 AM-12:45 PM)

Poster/Presentation
Number 11-019

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.

Authors/Disclosures
Kelly G. Gwathmey, MD (VCU Neuroscience, Orthopedic, and Wellness) PRESENTER	Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Alexion Pharmaceuticals. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Argenx. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Argenx. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Strongbridge. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Amgen. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis. Dr. Gwathmey has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion Pharmaceuticals. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Cabaletta. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Alexion Pharmaceuticals.
Rachelle Rodriguez (Janssen Pharmaceuticals)	No disclosure on file
Zia U. Choudhry, MD, PhD (JOHNSON AND JOHNSON)	Dr. Chaudhry has received personal compensation for serving as an employee of Johnson & Johnson. Dr. Chaudhry has received personal compensation for serving as an employee of Takeda Pharmaceuticals.
Louis Jackson, PharmD (Janssen)	Dr. Jackson has received personal compensation for serving as an employee of Johnson and Johnson.
Wesley Peters (CorEvitas)	No disclosure on file
Gabrielle Geonnotti (Johnson & Johnson)	No disclosure on file
Sindhu Ramchandren, MD (Janssen Pharmaceutical Companies of Johnson & Johnson)	Dr. Ramchandren has received personal compensation for serving as an employee of Janssen Pharmaceutical Companies of Johnson & Johnson.
Maria Ait Tihyaty (Johnson and Johnson Innovative Medicine)	Dr. Ait Tihyaty has received personal compensation for serving as an employee of Dianthus Therapeutics.
Neelam Goyal, MD, FAAN (Stanford University)	Dr. Goyal has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Argenx. Dr. Goyal has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for UCB. Dr. Goyal has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Janssen. Dr. Goyal has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion. The institution of Dr. Goyal has received research support from Argenx.

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