The international MyRealWorldMG study collects real-life data from adults with autoimmune myasthenia undergoing treatment. Each month, they answer different patient-reported outcome measures (PROM), specific or not to myasthenia: EQ-5D-5L, MG-ADL, MG-QoL-15r…
Preliminary data from the first 834 participants show that:
- the results of the different PROMs are consistent and show a significant impact of the disease on health-related quality of life, despite treatment;
- this impact increases with the severity of the disease (MGFA score);
- the most frequently reported difficulties concern daily activities (shopping, work, etc.), psychological health (anxiety, depression), level of fatigue, breathing and vision.
