The Patient Experience in Myasthenia Gravis: A Survey of 109 Individuals Regarding Their Care Journey


Clinical Management

Poster Number: M257


Chloe Gianatasio, MS, Efficient CME, James Howard, MD, University of North Carolina, Chapel Hill, Ericka Greene, MD, MACM, Houston Methodist Hospital, Nicholas Sylvestri, MD, FAAN, University at Buffalo Jacobs School of Medicine and Biomedical Sciences, Rebekah Dorr, Myasthenia Gravis Hope Foundation, Brian Moss, Efficient CME

Background: Prognosis in myasthenia gravis (MG) has significantly improved with immunotherapy, implying that patients lead nearly normal lives. However, reports suggest that there may be a gap between clinician and patient perceptions.

Objective: To document the experiences and satisfaction of people with MG regarding their diagnosis and treatment.

Methods: A 44-item online, IRB-exempt survey was conducted in May 2023. Participants were recruited through the MG Hope Foundation. Data were aggregated and analyzed to be utilized within a CME activity.

Results: The 109 respondents (80% female) were diagnosed with MG for a mean of 8.2 years (range: <1-24 years). 88% and 28% had experienced generalized and ocular MG, respectively. Reported serostatuses (unconfirmed) were 39% anti-AChR+, 31% seronegative, 9% anti-MuSK+, 4% anti-LRP4+, and 17% unsure. More than 1/3 of respondents were dissatisfied with their diagnostic journeys. 72% experienced delay, of whom nearly half (47%) saw multiple clinicians before diagnosis and about 1/3 were misdiagnosed. The top misdiagnoses were psychiatric disorders (48%), fatigue (43%), and fibromyalgia (33%). 40% of patients felt that their symptoms were not taken seriously. 54% of patients reported dissatisfaction with their current disease state. 38% of respondents underwent thymectomy. The most common current medications included pyridostigmine (76%), corticosteroids (39%), immunoglobulins (28%), and azathioprine (20%). 20%-52% also reported discontinuing these medications, primarily related to side effects. 51% said current treatment side effects were at least moderately disruptive to daily life. 68% reported having never been counseled about recent FDA-approved therapies (eculizumab, efgartigimod, ravulizumab). 17% receiving these medications reported improvements that trended higher than for those prescribed traditional agents. Conclusions: Dissatisfaction with diagnostic and treatment journeys was frequent. Many patients experienced diagnostic delays and therapeutic side effects that lead to discontinuation or impeded daily function. Improvements in clinical perceptions/communication, access to specialized care, and expanded therapies are needed to improve quality-of-life in this population.