Division of Neurology, American Center for Psychiatry and Neurology, Abu Dhabi, UAE; Department of Pediatrics, Faculty of Medicine, Ain Shams University, Cairo, Egypt.
Division of Neurology, American Center for Psychiatry and Neurology, Abu Dhabi, UAE.
Seizure. 2022 Jan;94:57-65. doi: 10.1016/j.seizure.2021.11.011. Epub 2021 Nov 24.
Background- Sudden unexpected death in epilepsy (SUDEP) is an important concern in patients with epilepsy who are otherwise healthy. Current knowledge of SUDEP and attitudes of neurologists in the Eastern Mediterranean Region (EMR) towards discussing SUDEP with their patients remain unknown. Objective- We aimed at assessing knowledge, attitudes and factors affecting SUDEP discussion practices of neurologists practicing in the EMR. Methodology- An electronic and paper-based survey was sent to 350 neurologists practicing in the EMR. They were questioned about the frequency, timing, and factors affecting their willingness to initiate SUDEP discussion. We also included questions about perceived patient reactions towards SUDEP discussions and neurologists' preferred way to provide SUDEP information to their patients. Results- We received 132 responses from the 350 surveys sent out (response rate 37.7%). Our results showed that only 1.5% of the neurologists discussed SUDEP with "most" of their patients and their caregivers while 55.3% "rarely" or "never" discussed it. Factors such as additional epilepsy training and more years of clinical experience did not significantly affect the frequency of SUDEP discussion (p = 0.329, p = 0.728). A significant negative association between the number of patients seen per year and the frequency of SUDEP discussion was seen (P= 0.046). Based on their selection of known risk factors, 81% of neurologists were considered as having insufficient knowledge of SUDEP. The top three perceived reactions by the neurologists on SUDEP discussion were distress (74.2%), anxiety (70.5%) and depression (65.9%). Most neurologists initiated SUDEP discussion by themselves and preferred brochures/pamphlets, websites and training sessions to provide SUDEP information. Conclusion- Neurologists in the EMR rarely discuss SUDEP, and have limited knowledge about its risk factors. Upon discussing SUDEP, they overwhelmingly receive negative reactions but not always. Based on our findings, we believe an unintended knowledge gap exists on part of the neurologists. This, coupled with a lack of trained epilepsy nurses and patient education material in regional languages can also be attributed to poor SUDEP discussion practices in the EMR.
背景- 癫痫猝死（SUDEP）是癫痫患者中一个重要的关注点，这些患者通常身体健康。目前，我们对 SUDEP 的了解以及东地中海地区（EMR）的神经科医生对与患者讨论 SUDEP 的态度尚不清楚。目的- 我们旨在评估在 EMR 中执业的神经科医生对 SUDEP 的了解、态度以及影响他们进行 SUDEP 讨论的因素。方法- 我们向 EMR 中 350 名神经科医生发送了一份电子和纸质调查问卷，询问他们讨论 SUDEP 的频率、时间以及影响他们愿意开展讨论的因素。我们还包括了关于患者对讨论 SUDEP 的反应的问题，以及神经科医生向患者提供 SUDEP 信息的首选方式。结果- 在发出的 350 份调查中，我们收到了 132 份回复（回复率为 37.7%）。我们的结果表明，只有 1.5%的神经科医生会与“大多数”患者及其照顾者讨论 SUDEP，而 55.3%的神经科医生则“很少”或“从不”讨论。其他因素，如额外的癫痫培训和更多的临床经验，并没有显著影响讨论 SUDEP 的频率（p=0.329，p=0.728）。我们还发现，每年看诊的患者数量与讨论 SUDEP 的频率之间存在显著的负相关（P=0.046）。根据他们对已知危险因素的选择，81%的神经科医生被认为对 SUDEP 的了解不足。神经科医生对讨论 SUDEP 最担心的三个反应是痛苦（74.2%）、焦虑（70.5%）和抑郁（65.9%）。大多数神经科医生会自行开展 SUDEP 讨论，并更喜欢使用宣传册/手册、网站和培训课程来提供 SUDEP 信息。结论- EMR 的神经科医生很少讨论 SUDEP，对其危险因素的了解有限。在讨论 SUDEP 时，他们得到的反馈大多是负面的，但并不总是如此。根据我们的发现，我们认为部分神经科医生存在未被察觉的知识差距。此外，区域语言的癫痫专科护士和患者教育材料的缺乏也可能导致 EMR 中 SUDEP 讨论实践不佳。
