Standardized education may reduce death risk in children with epilepsy

Measures to prevent sudden unexpected death in epilepsy (SUDEP) among pediatric patients, such as awareness education and the use of a standardized questionnaire, are vital, according to a recent study published in Epilepsia Open.¹

Despite other causes of death that may occur among children with epilepsy, SUDEP, defined as sudden non-traumatic and non-drowning deaths among patients with epilepsy, has been identified as the most common source of mortality among this population. This population also has a 3-fold increased risk of cardiac death vs their non-epileptic peers.²

“There is no standardized guideline on SUDEP prevention and patient education,” wrote investigators.¹ “Knowledge of SUDEP is crucial for the implementation of effective preventive strategies.”

Use of a standardized SUDEP questionnaire

The cross-sectional pediatric study was conducted to determine gaps in information, obstacles, and reservations related to risk management in children with SUDEP. This was accomplished using SUDEP questionnaires, often used in the framework of consultations.

Everyday clinical practice was observed as the framework for the questionnaire, with 25 items included in the final version. Of these, 13 could be answered dichotomously, while the remainder had multiple answers or let respondents write their own answer. These items were evaluated and confirmed as suitable by experts in the field of psychology.

Participants included children aged 0 to 18 completing the questionnaire following treatment for seizures at the German Epilepsy Center for Children and Adolescents. Age categories for these patients included kindergarten, defined as 0 to 6 years, primary school, defined as 7 to 12 years, and secondary school-aged children, defined as 12 to 18 years.

Nighttime monitoring and patient characteristics

The questionnaire included items about seizure types and frequency, resuscitation training, co-sleeping, and nighttime monitoring. Pulse oximeters, which measure heart rate and oxygen saturation, were used for nighttime monitoring alongside the Nightwatch device, which detects limb movements and heart rate changes.

Parents and other caregivers completed the questionnaire for younger patients or for older patients with developmental delay. Patients aged at least 10 years with normal cognition filled out the questionnaire independently or with the help of a guardian.

There were 498 children with epilepsy included in the final analysis, diagnosed with epilepsy at a median of 9 years. Of this population, 69% were diagnosed when aged over 1 year. Epilepsy onset occurred at a mean age of 4.4 years, and an epilepsy syndrome was assigned to 47% of participants.

Awareness of SUDEP and monitoring use

Based on survey responses, 54% of parents or guardians had already been informed about SUDEP by the research team, while 4% heard about SUDEP by chance. Forty-two percent of parents were unaware of SUDEP, 25% of whom could be informed verbally in the following visit. Another 9% were informed at a later time, leading to an education rate of 92% in the study center.

Use of a monitoring device was reported by 46% of patients, with 49% not using a device and 27% unaware of the possibility of monitoring. Additionally, 25% of patients reported problems with cost coverage, and 37% of these patients were assigned to a high-risk group for SUDEP.

Nightwatch was the most common night monitoring system, with use in 51% of patients, followed by pulse oximeters in 27%. The use of Epicare 3000, Epicare free, and non-approved systems was also reported.

Reported reasons for monitoring included a desire to be alerted to cardiovascular problems in 76% of cases, a desire for better sleep in 64%, wanting to know about seizure frequency in 56%, wanting more autonomy or privacy by 26%, and other reasons in 7%. Co-sleeping with their child was reported by 39% of guardians.

Resuscitation training and overall implications

Not having taken part in resuscitation training was reported by 77% of caregivers, despite the service being free of charge at the study center. Additionally, only 50% of parents whose children experience seizures with cyanosis completed training. Overall, these results highlighted inadequate awareness of SUDEP.

“Our findings underscore the urgent need for standardized SUDEP awareness education, such as the structured approach at our center, including in-house training of physicians and of parents or caregivers, the use of a standardized questionnaire, and the documentation of SUDEP risk and prevention measure counseling status,” wrote investigators.

References

1. Lutz L, Becker LL, Koch A, Kaindl AM. Sudden unexpected death in epilepsy (SUDEP): Risk management of pediatric patients with epilepsy. Epilepsia Open. 2026. doi:10.1002/epi4.70214
2. Zack M, Luncheon C. Adults with an epilepsy history, notably those 45-64 years old or at the lowest income levels, more often report heart disease than adults without an epilepsy history. Epilepsy Behav. 2018;86:208-210. doi:10.1016/j.yebeh.2018.05.021