Understanding patient perspectives on myasthenia gravis treatment can help optimize care

Patients with myasthenia gravis (MG) often experience negative emotions toward treatment, and considering patient preferences can help optimize and personalize treatment, and thus improve patients’ overall well-being. patients, according to a study that used patient focus groups and artificial intelligence (AI). ) – in-depth analysis of discussions on social networks, published in Health Science Reports.¹

“In our study, some posts reported patient frustrations due to lack of treatment change or persistent use of the same type of treatment (i.e. treatment inertia). Some patients also expressed feeling that their symptoms were ignored by their clinician. This may suggest a clinician-patient disconnect, highlighting the need for treatment discussions that take into account patients’ quality of life considerations and their treatment priorities,” the authors wrote.

According to the study, which analyzed the perspectives of adult patients in the United States from 2020 to 2022, understanding the perspectives and preferences of patients and care partners is crucial for the treatment of MG due to the high symptom burden and treatment of MG. There is no consensus on the definition of optimal disease control, the authors say.

Symptom-related online opinions regarding MG were categorized as negative (78%), neutral (19%), or positive (3%). The most frequently mentioned symptoms were dysarthria, muscle weakness and dysphagia. In terms of MG treatment, 67% of messages were neutral, 29% were negative and 4% were positive.

Opinions were solicited through structured discussions on Inspire.com communities and open social networks such as Reddit, Instagram, X (formerly Twitter) and Facebook. The insights were analyzed using AI-based voice analysis tools. A total of 11,554 distinct messages were identified among 8,321 MG patients.

Fear (69%) was the most frequently expressed emotion among 5 emotion categories for comments related to symptoms analyzed by the AI ​​tool, with muscle weakness being the main symptom that patients associated with fear, followed by dysarthria and breathing difficulties.

Negative treatment posts on social media focused on adverse events, unstable disease control, and treatment inertia.

Virtual focus groups held in June 2023 included 12 patients with MG, average age 52 years, and 3 care partners. Participants prioritized convenient, fast-acting treatment; symptom control with minimal adverse effects; and prevent potential MG attacks in their current treatment. Expectations for the new treatment included increased effectiveness, less frequent dosing, faster onset, and fewer side effects. Participants reported that they valued direct involvement in treatment decisions and were open to wearable drug delivery systems placed on the body. Participants were predominantly female (60%) and White (60%), and 8 respondents (5 patients and 3 care partners) reported that they or their loved one had been diagnosed with MG between 1 and 5 years earlier.

According to a 2023 study, patients with MG reported an average of 16 symptoms, including drooping eyelids (93%), physical fatigue (89%), symptoms affecting the legs (82%), difficulty breathing ( 82%) and difficulty holding the head. increasing (82%).² Almost all participants reported variations in symptoms and severity. All patients revealed negative emotional impacts, including on their work and finances. Their primary treatment goal was to minimize the emotional impact.

The new study was sponsored by Janssen Pharmaceuticals.¹

“In our focus groups, the relationship between treatment factors and possible improvement in quality of life was a driving factor in our participants’ treatment decisions,” the authors wrote. “The results of this study also highlighted the importance of holistic treatment and consideration of patient preferences, which could improve quality of life. »

References

1. Yung M, Narayanaswami P, Pesa J et al. Patient and care partner perspectives and preferences related to myasthenia gravis treatment: a qualitative study. Scientific health representative. 2024;7(9):e70081. doi:10.1002/hsr2.70081
2. Jackson K, Parthan A, Lauher-Charest M et al. Understanding symptom burden and impact of myasthenia gravis from the patient perspective: a qualitative study. Neurol Ther. 2023;12(1):107-128. doi: 10.1007/s40120-022-00408-x