Sudden unexpected death in epilepsy (SUDEP): Risk management of pediatric patients with epilepsy.

objectiveSudden unexpected death in epilepsy (SUDEP) is the leading cause of death in people with epilepsy with an incidence of 1:1000. The primary risk factors for SUDEP are generalized or focal to bilateral tonic-clonic seizures. Preventive measures like nighttime monitoring devices and resuscitation training address modifiable risk factors. Nevertheless, SUDEP awareness remains insufficient. This study aimed to analyze risk awareness and behavior and to evaluate the impact of a questionnaire.

methodsIn a monocentric cross-sectional pediatric study, routinely used questionnaires were analyzed retrospectively regarding SUDEP awareness rates and monitor ownership.

resultsA total of 498 patient families completed the questionnaire between December 2023 and July 2024. At the time of the survey, 58% recalled having been informed about SUDEP before the questionnaire. The SUDEP questionnaire led to an education in the following outpatient clinic in 25%. A further 9% had been counseled within the following 6 months, leading to an education rate of 92%. Monitoring devices were used in 46% of patients, with nocturnal monitoring being most frequently used in children <4 years. Among those who did not use a monitor and provided reasons against monitoring, half had SUDEP risk factors. Additionally, one third of the responders reported not using their seizure detecting device, with false alarms (28%) being the most frequently cited reason. SIGNIFICANCE: All patients with epilepsy should be counseled about epilepsy-related risks and preventive measures. Our study highlights SUDEP education gaps and the need for targeted counseling strategies to contribute to SUDEP prevention. The findings show that a structured questionnaire can effectively identify education gaps, enhance counseling efforts, and improve health literacy. Furthermore, there is a need for the development of novel, reliable seizure detection devices. PLAIN LANGUAGE SUMMARY: Sudden unexpected death in epilepsy (SUDEP) remains the most common cause of death in people with epilepsy. That is why it is important to take steps to prevent it. We still do not fully understand why SUDEP occurs and how it can be completely prevented. But it is very important to be aware of the risk. This enables those affected and their families to take measures to reduce the danger. This text explains how to inform more people about SUDEP. It also shows a possible role of nighttime monitoring devices in the prevention of SUDEP.