The economic burden of Myasthenia gravis from the patient´s perspective and reflected in German claims data.

Myasthenia gravis (MG) is a neuromuscular disorder resulting in exertion-dependent muscle fatigability. Affecting all age groups MG is a chronic disease with unpredictable fluctuations and a range of symptom expression which can require costly immunosuppressive therapy and intensive care critically influencing economic burden. Here we aim to elucidate both the personal and societal economic burden of MG. Data were used from two sources: (1) a cross sectional study of MG patients registered in the German Myasthenia Society (DMG) collected by a survey in 2019 (n = 1660), and (2) from a dataset provided by a German health insurance company covering the period from 01/01/2014 to 31/12/2019 (n = 750) and categorized to similar subgroups for comparison. Individual and societal economic burden was highest in patients with intensified medical treatment. Absence days from work per patient year in the first year after index in claims data were 67.1 days (95% CI 66.1-68.2) (referring to n = 260 non-retired patients). Of 686 patients with early onset (< 50 years) MG 260 (41.2%) reported loss of income due to MG in DMG data. Average inpatient costs from claims data in patients with intensified treatment (38,669€; 95% CI 38,627-38,712€) were particularly high compared with standard treatment (2980€; 95% CI 2975-2986€) and to no MG-related treatment (887€; 95% CI 877-886€). MG represents a major economic burden for the individual and the health care system. The costs are positively associated with the severity of disease. The economic burden is particularly high for working patients. UCB Pharma provided financial support for the subanalysis, but was not involved in the design of the study.Trial registration: clinicaltrials.gov, NCT03979521, submitted: June 7, 2019, first patient enrolled: May 1, 2019, https://clinicaltrials.gov/ct2/show/NCT03979521 .