Epidemiology and healthcare utilization in motor neuron disease in Czechia

The demographic and epidemiological profile of motor neuron disease (MND) in Czechia remains unknown, highlighting a critical gap; this study aims to examine the epidemiology of MND using population-based data. We conducted a 10-year retrospective study (2012-2022) to analyze prevalence, incidence, mortality, and healthcare utilization, including Riluzole treatment and multidisciplinary care. Our epidemiological findings were compared with the Global Burden of Disease estimates to highlight the importance of real-world data. Based on the data from 4583 patients with MND, the mean annual age-standardized incidence is 3.91 (95% confidence interval [CI] 3.73 - 4.09) per 100,000 individuals, and the mean annual age-standardized prevalence is 10.43 (95% CI 9.91 - 10.95) per 100,000 individuals. The incidence and mortality rates are stable, whereas the prevalence slowly increases. A total of 58.9% of the patients are male. Median survival time is 4.27 years. Most patients, 63.7%, die in hospital, followed by home 27.9%. From healthcare services, physiotherapy and rehabilitation are the most frequently utilized, with 67% of patients benefiting. Only 6.2% of patients use genetic counseling. Riluzole is used by 43% of patients with MND. Comparing incidence and prevalence rates with Global Burden Data estimates and local studies from European countries, we identified differences highlighting the need for real-world data. This study provides crucial real-world data on MND epidemiology and healthcare consumption in Czechia, shedding light on a previously under-researched area. These insights could navigate healthcare resource use and evidence-based policies, improving outcomes for patients and caregivers while deepening understanding of MND in Europe.