To estimate the prevalence of status epilepticus (SE), refractory status epilepticus (RSE), and super-refractory status epilepticus (SRSE) in five major European Union (5EU) markets (France, Germany, Italy, Spain, and the UnitedKingdom) using an incidence-survival model.
Yearly survival data for each SE etiology (acute symptomatic, progressive symptomatic, remote symptomatic, and idiopathic/cryptogenic) were extracted from published research. Incident cases were calculated for each etiology beginning with 1995, based on market-specific published rates. Applying the survival proportions and incidence estimates to the model for each etiology, we calculated an overall estimate of the prevalence of SE. RSE and SRSE prevalent cases were assessed as proportions of the total number of prevalent SE cases using published values.
We estimated the prevalence of SE to be 18.4 cases per 10,000 population in the5EU, resulting in 590,264 cases in 2015 and increasing to 603,951 in 2024. The calculated prevalence ranged from 17.2 cases per 10,000 (Germany) to 19.7 cases per 10,000 (Italy). The prevalence of RSE in the 5EU was 4.5 per 10,000, resulting in 145,205 cases in 2015, increasing to 148,572 in 2024. SRSE prevalence in the 5EU was 1.8 per 10,000, resulting in 59,027 cases in 2015, increasing to 60,395 in 2024.
To our knowledge, this is the first attempt to calculate the prevalence of SE and its subtypes for all ages in Europe. Estimating the prevalence of SE, RSE, and SRSE using population-based epidemiological methods is challenging because of the variability of SE disease definitions and the unpredictable nature of mortality due to SE. Our incidence-survival model provides an alternative and effective method to assess the prevalent population. Considering the high costs associated with treatment and hospitalization of SE, RSE, and SRSE patients, these estimates are necessary to quantify the burden of disease in Europe.