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

OBJECTIVE: Sudden 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. METHODS: In a monocentric cross-sectional pediatric study, routinely used questionnaires were analyzed retrospectively regarding SUDEP awareness rates and monitor ownership. RESULTS: A 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