Observational studyBMJ open2024
SPOON: an observational, cross-sectional study of perceptions and expectations of adults with generalised myasthenia gravis in France.
Observational study in BMJ open, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
6 citing papers in PubMed.
- Exploring psychosocial experiences in clinically stable generalised Myasthenia Gravis: A thematic analysis.Journal of neuromuscular diseases · 2026Article
- Interoperable Integration of a National Rare Disease Registry Into a Rare Eye Disease Data Warehouse: Implementation Study.JMIR medical informatics · 2026Article
- 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
- Minimal Symptom Expression in Generalized Myasthenia Gravis: A Valuable Patient-Centric Treatment Goal.European journal of neurology · 2026Review
- Female gender and quality of life outcomes in myasthenia gravis: a systematic review and meta-analysis.Therapeutic advances in neurological disorders · 2025Article
- The study of social participation and its influences on young and middle-aged patients with myasthenia gravis.Frontiers in neurology · 2025Article
Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesTo capture patient perceptions about living with myasthenia gravis (MG) with respect to aspirations and ways to improve treatment.
designOnline patient survey.
settingPatients recruited by MG patient associations or at MG reference treatment centres.
participantsAdults with physician-diagnosed generalised MG, living in France for ≥12 months, who had received ≥1 MG treatment were eligible. 291 patients opened the questionnaire, 255 were eligible and 246 completed the survey (age range 41-67 years; 187 women and 59 men). PRIMARY AND SECONDARY OUTCOME MEASURES: Primary: free-text response to the question 'Living with your disease, what would you like to do that you currently find difficult or impossible to do?' Secondary: free-text response to the question 'What improvements do you think could be made to treatments for MG?' Themes from replies to these questions were analysed using grounded theory and cluster analysis.
resultsFor the disease aspirations question, 617 citations were provided by 238 participants, which were grouped into 45 dimensions and six high-level domains (physical activity, activities of daily living, psychological burden, social activities, work/school and other). The most frequently cited dimensions were sport (82 citations), greater mobility (56 citations), being less tired (46 citations) and greater endurance (37 citations). Younger age, female gender, recent diagnosis and poorer quality of life were associated with citing more themes. For the treatment amelioration question, 263 citations were provided by 195 participants, which were grouped into 60 dimensions and three high-level domains (medication characteristics, safety and care paradigm). The most cited treatment-related dimensions were fewer side effects (40 citations), fewer daily medication intakes (21 citations) and fewer digestive side effects (20 citations).
conclusionsThese findings could help healthcare professionals to understand and better address patients' aspirations about living with MG, notably concerning the importance of physical activity, and their expectations for improved treatments.
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