The Life with Myasthenia Gravis: Socioeconomic Impact of the Disease on Patients in the Czech Republic

OBJECTIVES: Myasthenia gravis (MG) is a rare, chronic, autoimmune disease with disorders of neuromuscular transmission resulting in muscle weakness. Our study explored its socioeconomic burden.

METHODS: A cross-sectional questionnaire survey was conducted to observe local Czech data on the socioeconomic impact on MG patients. Data were collected between 17-Jan-2023 and 15-Feb-2023 in cooperation with the patient association (MYGRA-CZ) and the Neuromuscular Centre of the University Hospital Brno. We collected demographic, clinical, healthcare resource use data, out-of-pocket and social transfer costs, and responses to validated specific questionnaires: WPAI (Work Productivity and Activity Impairment) and EQ-5D-5L. Productivity loss/costs were assessed using a human capital approach and discounted by 3%.

RESULTS: 82 patients (61% women) with MG completed the questionnaires with mean age of 58.8 years. Only 1/82 patients had a caregiver, therefore caregiver results were not assessed. The mean EQ-5D-5L score in patients with MG was 0.706, mean EQ VAS was 0.720.

Total out-of-pocket costs per patient (n=82) related to MG was €59.4/month which included transport costs, additional payments for medicines, over-the-counter medicines, vitamins and other costs (i.e. rehabilitation, housekeeping services). A significant proportion of patients received a disability pension due to MG (23%) or mobility allowance (16%). Mean total governmental social benefits per patient (n=82) were €155.4/month.

The work impairment of employed patients (n=36) was 26%, with the majority being presenteeism (23%). Total lifetime discounted productivity costs extrapolated to the whole Czech cohort (n=2800) were €173,093,364 (€55,100/patient).

CONCLUSIONS: The results of this cross-sectional survey show that MG brings a significant societal burden. The disease is associated with many inconveniences caused either by the disease itself or by its treatment. Patients' quality of life, their ability to work and their ability to carry out normal daily activities are severely impaired. The overall burden on the health and social systems is considerable.