ArticleHealth science reports2024
Design of and Early Insights From a Generalized Myasthenia Gravis Patient Engagement Research Council.
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 4 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
4 citing papers in PubMed.
- Self-administration of rozanolixizumab via manual push and infusion pump methods in patients with generalised myasthenia gravis: a randomised, phase 3, open-label, crossover study.Journal of neurology · 2025Trial
- Formative Research in the Codesign of a Discrete Choice Experiment with Patients with Myasthenia Gravis: Selecting and Refining Attributes, Levels and Scenarios.The patient · 2026Article
- Digital assessment in myasthenia gravis: evidence, validation, and a proposed framework for autoimmune heterogeneity, remote monitoring, and clinical endpoints.Frontiers in immunology · 2026Review
- Patient preferences and willingness-to-pay for therapy in generalized myasthenia gravis: a large-scale discrete choice experiment in China.Frontiers in immunology · 2026Article
Corrections and comments
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Authors and funding
10 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background and Aims: An exploratory focus group study was conducted to better understand the needs of patients living with generalized myasthenia gravis (gMG). Methods: US-based adults with gMG and caregivers of patients with gMG participated in a Patient Engagement Research Council between August 2022 and January 2023. The study consisted of a 15-min prework survey, followed by virtual focus groups facilitated using a semi-structured interview guide. Data concepts were identified using conversational analysis and by direct observation. All transcripts were coded based on concepts using a qualitative research analysis program (MaxQDA). Results: 16 participants (13 patients, three caregivers) were recruited. Participants reported impact on daily activities, fatigue, and psychosocial problems. Many participants experienced delayed diagnosis and difficulty accessing specialist care. Participants described multiple barriers related to their gMG, including barriers to treatment, access-related issues, and communication disconnect between patients and healthcare professionals. Achieving stable disease was the most important goal. There was a preference for the autonomy of self-administered medications at home versus infusions. Study insights led to recommendations to guide patient and healthcare professional education. Conclusion: The study illustrates the need to improve access to specialist care, achieve earlier diagnosis, prioritize patients' preferences in disease management, and develop treatments that improve outcomes without additional burden. Patient or Public Contribution: The data collected in this study was provided by the focus group participants, which included patients and caregivers of those with myasthenia gravis.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.