Using an animated video to promote an informed discussion on SUDEP with adolescents

The purpose of this study was to create and test an animated video to teach adolescent patients about Sudden Unexpected Death in Epilepsy (SUDEP).

Thirty-nine patients and thirteen parents watched the SUDEP video and completed at least one survey. Patients with epilepsy aged 14+ and their parents were recruited to watch the video during neurology clinic visits. Parents of minors provided verbal permission for their child to view the video. Participants were asked to complete pre- and post-video surveys. Data analysis included Fischer's exact tests for comparative data and percentages for categorical variables.

After watching the SUDEP video, 100% of parents and patients agreed that the video provided helpful knowledge, and 100% of parents and 96% of patients agreed that patients with epilepsy should know about SUDEP. Half of the parents surveyed, and 20% of patients, felt increased concerns after watching the video. Patients rated their understanding of SUDEP significantly higher after watching the video (p < 0.001).

Participants in this study thought that it was important for patients with epilepsy to know about SUDEP, and all agreed that the animated SUDEP video provided helpful knowledge. While some parents endorsed increased concerns after watching the video, the majority of parents still agreed to allow their child to watch the video. Adolescent education on SUDEP using a family-centered approach may be an important method of encouraging harm-reducing behaviors that can be lifesaving for patients with epilepsy. The standard of practice for SUDEP disclosure should continue to be face-to-face discussion with providers, and we propose this video as a tool to elevate and inform those discussions.