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.