SPOON: an observational, cross-sectional study of perceptions and expectations of adults with generalised myasthenia gravis in France

Abstract

Objectives To capture patient perceptions about living with myasthenia gravis (MG) with respect to aspirations and ways to improve treatment.Design Online patient survey.Setting Patients recruited by MG patient associations or at MG reference treatment centres.Participants Adults 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.Results For 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).Conclusions These 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.