Departments of Pediatrics and Neurology, Division of Pediatric Neurology, Boston University School of Medicine, Boston Medical Center, Boston, MA, USA.
Departments of Pediatrics and Neurology, Division of Pediatric Neurology, Boston University School of Medicine, Boston Medical Center, Boston, MA, USA.
Epilepsy Behav. 2021 Sep;122:108182. doi: 10.1016/j.yebeh.2021.108182. Epub 2021 Jul 10.
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.
本研究旨在制作并测试一个动画视频，以向青少年癫痫患者讲授猝倒性癫痫猝死（SUDEP）。
39 名患者和 13 名家长观看了 SUDEP 视频并完成了至少一项调查。在神经科诊所就诊期间，招募了年龄在 14 岁及以上的癫痫患者及其家长观看视频。未成年患者的家长口头同意其观看视频。参与者被要求在观看视频前后完成调查。数据分析包括Fisher 精确检验用于比较数据和百分比用于分类变量。
观看 SUDEP 视频后，100%的家长和患者均认为视频提供了有帮助的知识，100%的家长和 96%的患者均认为癫痫患者应该了解 SUDEP。接受调查的家长中有一半，以及 20%的患者，在观看视频后感到担忧增加。患者观看视频后对 SUDEP 的理解程度显著提高（p<0.001）。
本研究的参与者认为癫痫患者了解 SUDEP 很重要，所有参与者均认为动画版 SUDEP 视频提供了有帮助的知识。虽然一些家长在观看视频后表示增加了担忧，但大多数家长仍同意让孩子观看视频。采用以家庭为中心的方法对青少年进行 SUDEP 教育可能是鼓励减少伤害行为的重要方法，这些行为可能对癫痫患者的生命安全至关重要。SUDEP 披露的标准实践应继续是与提供者进行面对面的讨论，我们建议将该视频作为提升和丰富这些讨论的工具。
