Diagnostic delays, side effects lead to dissatisfaction in patients with myasthenia gravis

Key takeaways:

• More than two-thirds of those dissatisfied said they received no advisement regarding newer therapies.
• Communication, access to care and therapies are needed to improve quality of life for patients.

Most individuals with myasthenia gravis were satisfied with their patient journey, but those who were dissatisfied cited issues with diagnostic delays, side effects of treatment and lack of advisement on approved therapies.

“Prognosis in myasthenia gravis has significantly improved with immunotherapy, implying that patients lead nearly normal lives,” Chloe Gianatasio, MS, senior director of scientific affairs at Efficient CME, based in Florida, and colleagues wrote in a poster from the 2024 Muscular Dystrophy Association Clinical & Scientific Conference. “However, reports suggest that there may be a gap between clinician and patient perceptions.”

Gianatasio and colleagues attempted to document the experiences and satisfaction of individuals with myasthenia gravis regarding their diagnosis and treatment.

They created and submitted a 44-item online, IRB-exempt survey. The survey was sent to individuals recruited through the MG Hope Foundation in May 2023. Answers for 109 respondents (80% female), diagnosed with the condition for a mean of 8.2 years, were aggregated and analyzed.

According to results, 57% of those surveyed were satisfied but 34% of respondents reported dissatisfaction with their diagnostic journeys. Among that group, 72% experienced delays in their diagnosis, of whom nearly half (47%) saw multiple clinicians before diagnosis and about one-third recorded misdiagnoses, the highest percentage being psychiatric disorders (48%), fatigue (43%) and fibromyalgia (33%). An additional 40% of patients felt that their symptoms were not taken seriously, 54% reported dissatisfaction with their current disease state, and 38% underwent thymectomy.

Data further revealed that 51% of those surveyed admitted current treatment side effects were at least moderately disruptive to daily life and 68% reported receiving no prior advisement regarding recent FDA-approved therapies (eculizumab, efgartigimod, ravulizumab). Of those receiving these medications, 17% reported improvements that trended higher than for those who were prescribed traditional agents.

“Many patients experienced diagnostic delays and therapeutic side effects that lead to discontinuation or impeded daily function,” Gianatasio and colleagues wrote. “Improvements in clinical perceptions/communication, access to specialized care and expanded therapies are needed to improve quality of life in this population.”