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Abstract Details

Treatment Burden According to Patients with Generalized Myasthenia Gravis
Neuromuscular and Clinical Neurophysiology (EMG)
P6 - Poster Session 6 (5:30 PM-6:30 PM)
11-008
Advances in gMG treatments have led to marked reduction in mortality associated with the disease. However, many patients living with gMG continue to experience high disease and treatment burden related to persistent symptoms and toxicity of currently available treatments. 
To understand experiences of patients with generalized myasthenia gravis (gMG) and identify challenges and unmet needs.
In May 2021, we conducted a cross-sectional study of U.S. adults with a self-reported gMG diagnosis. Respondents were recruited from online panels to complete a survey about their condition and treatment. The study received IRB exemption.

152 patients with gMG completed the online survey. Mean disease duration since diagnosis was 12.5 years. The majority (72%) of patients agreed their current treatment was effective in controlling their gMG symptoms, but most (75%) reported not being in remission. Two-thirds said it took a long time to get a treatment plan in place that works for them. Patients were taking an average of 2.4 treatments for gMG, primarily acetylcholinesterase inhibitors (77%), non-steroidal immunosuppressants (NSID, 47%), and corticosteroids (CS, 41%). Side effects were common, and nearly all those on CS and NSIDs expressed concerns regarding short and long-term side effects. Some patients (22%) did not want to risk gMG exacerbation by switching or adding treatments as it took a while to find a stable therapeutic regimen. Many patients (63%) reported a high willingness to take any measure possible even if that means experiencing treatment and/or side effect burden. Most (89%) agreed that treatments specifically targeting the cause of gMG would advance the management of this disease.

Although many patients believe their current treatment regimen is effective, there is room for improvement in disease control, treatment toxicity, and amount of time to arrive at an effective treatment. There is preference for targeted gMG therapy with low side effect profile.
Authors/Disclosures
Tuan H. Vu, MD (University of South Florida)
PRESENTER
Dr. Vu has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Dianthus. Dr. Vu has received personal compensation in the range of $500-$4,999 for serving as a Consultant for ImmunAbs. Dr. Vu has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for ARGENX. Dr. Vu 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. Dr. Vu has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for UCB. Dr. Vu has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Alexion. Dr. Vu has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for CSL Behring. Dr. Vu has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for AbbVie. Dr. Vu has received personal compensation in the range of $50,000-$99,999 for serving on a Speakers Bureau for Argenx. The institution of Dr. Vu has received research support from CSL Behring. The institution of Dr. Vu has received research support from Alexion. The institution of Dr. Vu has received research support from RA Pharma/UCB. The institution of Dr. Vu has received research support from Mass Gen Hospital/Healy Platform Study. The institution of Dr. Vu has received research support from Amylyx Pharma. The institution of Dr. Vu has received research support from ARGENX. The institution of Dr. Vu has received research support from Annexon. The institution of Dr. Vu has received research support from Horizon. The institution of Dr. Vu has received research support from Woolsey Pharma. The institution of Dr. Vu has received research support from CSL Behring. The institution of Dr. Vu has received research support from Cartesian Therapeutics. The institution of Dr. Vu has received research support from Janssen/Momenta. The institution of Dr. Vu has received research support from Immunovant.
No disclosure on file
Neelam Goyal, MD (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 $10,000-$49,999 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.
Suraj Muley, MD, FAAN (Barrow Neurological Institute) Dr. Muley has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Argenx. Dr. Muley has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Alexion. Dr. Muley has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for CSL Behring. Dr. Muley has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Takeda. Dr. Muley has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Catalyst. Dr. Muley has received publishing royalties from a publication relating to health care.