ArticleHealth science reports2024
Patient and care partner perspectives and preferences related to myasthenia gravis treatment: A qualitative study.
Article in Health science reports, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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Who cites it
11 citing papers in PubMed.
- Telemedical communication patterns in myasthenia gravis in a remote monitoring study.Neurological research and practice · 2026Article
- Burden of Disease in Myasthenia Gravis: A Targeted Literature Review.Journal of neurology · 2026Review
- Bridging the gap between patient and physician perspectives on management of generalized myasthenia gravis: a Delphi consensus study.Orphanet journal of rare diseases · 2026Article
- Patient perspectives on cost and quality measures in value-based cancer care.Health affairs scholar · 2026Article
- Patient preferences and willingness-to-pay for therapy in generalized myasthenia gravis: a large-scale discrete choice experiment in China.Frontiers in immunology · 2026Article
- A Delphi consensus on integrating novel therapies into the management of generalized myasthenia gravis.Therapeutic advances in neurological disorders · 2026Article
- Application of artificial intelligence to measure and predict patient values and preferences: a scoping review.NPJ digital medicine · 2025Article
- Mental Health Experiences and Challenges Among Individuals with Myasthenia Gravis: Insights from Patient-Centered, Qualitative Analyses.Advances in therapy · 2025Review
- Treatment Preferences of Neurologists in Generalized Myasthenia Gravis: A Conjoint Analysis Study.Neurology and therapy · 2025Article
- AI-based thematic exploration to understand patients with myasthenia gravis by serological subtype.Frontiers in neurology · 2025Article
- Patient and care partner perspectives and preferences related to myasthenia gravis treatment: A qualitative study.Health science reports · 2024Article
Corrections and comments
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Authors and funding
16 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background and Aims: Due to the high symptom and treatment burden in myasthenia gravis (MG), understanding patient and care partner perspectives and preferences is crucial. Methods: This study used voice analysis and virtual focus groups to understand patient and care partner experiences with MG-related symptoms, treatments, and preferences. The voice analysis via social media listening used artificial intelligence-powered tools to gather and structure public digital conversations on MG. Focus groups included people living with MG and care partners who completed a questionnaire and participated in a 1-h virtual session facilitated using a semi-structured interview guide. Qualitative data were aggregated, transcribed, and thematically analyzed. Results: The voice analysis examined 11,554 posts from 8321 individuals, discussing MG symptoms, treatments, and burden. Of 7563 symptom-related posts, 5902 (78%) conveyed negative, 1427 (19%) neutral, and 234 (3%) positive sentiment. The most frequently mentioned symptoms were categorized as dysarthria, muscle weakness, and dysphagia. MG treatment sentiment analysis identified 6667 posts (67%) as neutral, 2887 (29%) as negative, and 350 (4%) as positive. For the focus groups, 15 individuals (12 patients and 3 care partners) completed the questionnaire and 14 participated in the virtual focus group sessions. The 15 participants who completed the questionnaire prioritized treatment convenience, symptom control for improved quality of life, and preventing potential MG crises in their current treatment. New treatment expectations included increased effectiveness, less frequent dosing, faster onset, and fewer side effects. Participants were also receptive to wearable medication delivery systems placed on the body and valued direct involvement in treatment decisions. Conclusion: Patients and care partners are often negatively impacted by MG symptoms and value convenient and fast-acting treatments that control symptoms with minimal side effects. Considering patient preferences may help optimize treatment decisions and improve patients' overall well-being and satisfaction in their care.
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