Treatment Preferences of Patients With Myasthenia Gravis: A Qualitative Study
Meg Mendoza, Elena Wolff, Michael Chou, Vera Bril, Hans Katzberg, Ahmed Bayoumi, Carolina Barnett‐TapiaABSTRACT
Introduction/Aims
The burden of myasthenia gravis (MG) is often underestimated, and studies usually focus on the symptom burden. However, treatment‐related adverse events also contribute to patients' burdens and affect their treatment decisions. Understanding the treatment preferences of people with MG will help inform patients, clinicians, and policy makers. We conducted a qualitative study to understand the most relevant factors that people with MG consider when making treatment decisions.
Methods
Fifteen patients with a wide range of MG severity participated in semi‐structured interviews. Interviews were recorded and transcripts were analyzed using line‐by‐line open coding to generate themes. We used these themes to identify the most relevant treatment characteristics for people living with MG.
Results
Four themes were identified: MG symptoms, treatment side effects, treatment delivery preferences, and treatment goals. Double vision was the most bothersome symptom for 40% of patients, and 33% reported weight gain as the most bothersome side effect of treatment. Most patients preferred treatments in the form of pills (67%). The most frequently reported treatment goals were returning to normal or “zero symptoms” (40%), discontinuation of prednisone (40%), and a preference to take fewer pills (33%).
Discussion
Our results underscore the importance of tailoring treatments to meet patient needs and preferences, emphasizing key treatment goals such as prednisone reduction, a preference for oral medications, and symptom resolution. We will incorporate these themes into a discrete choice experiment to gain a deeper understanding of how people with MG make treatment decisions when considering potential benefits and adverse events.