EQ-5D-5L is a relevant tool for detecting patients with myasthenia gravis needing medical treatment.

The generic and easy-to-use questionnaire EQ-5D-5L measures health status in five dimensions and is translated into one utility score, EQ-Utility. The study examined if the EQ-5D-5L could be a useful tool for identifying difficult-to-treat patients with myasthenia gravis who needed new therapies. The patients were informed about the study by phone and invited for a test visit. Close to the test visit, the patients completed online questionnaires. Four hundred twenty-five patients are registered with an MG diagnosis in our clinic. Of these, 80 could not be contacted, 39 were excluded, and 85 did not want to participate. Two hundred twenty-one patients participated in the tests, and of these, 178 completed the EQ-5D-5L and were included. The mean EQ-Utility (SD) was 0.85 ± 0.19. Women reported lower EQ-Utility than men (0.79 versus 0.92, p < .0001). The health-related quality of life decreased with increasing disease severity (p < .0001). The symptoms that impacted the EQ-Utility were swallowing (β = 0.065, p = .007), brushing hair/teeth (β = 0.089, p < .0001), rising from a chair (β = 0.069, p < .001), and ptosis (β = 0.045, p = .038). Factors influencing the EQ-Utility were MG-ADL score and depression. The EQ-5D-5L could detect patients with unmet needs and can be used routinely in the clinic.