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

• Published in: Epilepsy & behavior 2021-09, Vol.122, p.108182-108182, Article 108182
• Main Authors: Greenlaw, Celia, Elhefnawy, Yasmine, Jonas, Rinat, Douglass, Laurie M.
• Format: Article
• Language: English
• Subjects: Adolescence; Epilepsy; Medical ethics; SUDEP; Transition
• ISSN: 1525-5050; 1525-5069
• DOI: 10.1016/j.yebeh.2021.108182

•Sudden Unexpected Death in Epilepsy is a rare, but devastating complication in patients with epilepsy.•Many patients with epilepsy and their caregivers do not know about the risk of SUDEP.•Most parents were comfortable with their adolescent watching the SUDEP video.•All patients and parents felt the SUDEP video provided helpful information.•Patients rated their knowledge of SUDEP higher after watching the video. 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