Sudden unexpected death in epilepsy (SUDEP) in children and adolescents-numbers, data and facts

Background There is increasing awareness concerning sudden unexpected death in epilepsy (SUDEP) with respect to children and adolescents in recent years; however, the available data are heterogeneous and difficult to interpret, which complicates counselling of parents. Objective To provide a systematic overview of the different data on the topic of SUDEP in children and adolescents, to establish a basis for counselling of patients and their parents. Methods Systematic literature search in PubMed with special emphasis on literature concerning children and adolescents. Differentiation of three types of studies: population-based studies, studies based on patients with epilepsy and studies based on autopsies or mortality registers. Subsequent overview of the studies and classification of the different prevalence data with respect to different methodological aspects. Results The search found 3 population-based studies, 13 monocentric studies on epilepsy patients and 8 studies based on autopsies or mortality registers. The data on the frequency of SUDEP in childhood varied between 1.3 and 14.5 per 10,000 patient years. There were no pediatric studies including more than 20 affected children. There were considerable differences concerning methodology leading to difficulties comparing the different outcomes. This at least partly explains the different results and the resulting estimations. Conclusion Data were very difficult to compare, which is to a large extent due to a lack of information on age-related prevalence of epilepsy in the study collectives. The results were not uncommonly based on assumptions of the authors on the prevalence or extrapolated data. The data on the prevalence of epilepsy varied, which can have a substantial effect on the frequency, e.g. of SUDEP, especially with very low case numbers. Independent of the methods used, the case numbers for the populations with children with epilepsy given in the studies are low. Certain etiologies and/or epilepsy syndromes are associated with an increased risk; however, cases of SUDEP have also been described with usually benign forms of epilepsy.