The awareness, attitudes and knowledge of neurologists in Hungary on sudden unexpected death in epilepsy (SUDEP)

IF 2.3 3区医学 Q2 BEHAVIORAL SCIENCES

Epilepsy & Behavior Pub Date : 2025-04-26 DOI:10.1016/j.yebeh.2025.110442

Nandan Ravichandra , Anna Kelemen , Joanne McCabe , Zsofia Jordan , Moran Kanaan , Rohit Shankar

{"title":"The awareness, attitudes and knowledge of neurologists in Hungary on sudden unexpected death in epilepsy (SUDEP)","authors":"Nandan Ravichandra , Anna Kelemen , Joanne McCabe , Zsofia Jordan , Moran Kanaan , Rohit Shankar","doi":"10.1016/j.yebeh.2025.110442","DOIUrl":null,"url":null,"abstract":"<div><h3>Background</h3><div>A leading cause of epilepsy mortality is Sudden Unexpected Death in Epilepsy (SUDEP). All international epilepsy guidelines encourage clinicians to discuss SUDEP with people with epilepsy (PWE). However, implementation of this guidance has been ambiguous depending on the country in question. This is inspite of overwhelming wishes from PWE for their clinician to discuss it with them. There has been no study to inquire into the knowledge, awareness and attitudes towards SUDEP communication in epilepsy professionals in Hungary (population: 9.6 million).</div></div><div><h3>Objective</h3><div>We investigated neurologists and paediatric neurologists views in Hungary on SUDEP counselling.</div></div><div><h3>Methods</h3><div>A cross-sectional online survey of 20 questions many Likert style using validated themes was disseminated among doctors working with PWE, registered to the Hungarian chapter of the International League Against Epilepsy (ILAE). A non-discriminatory exponential snowballing technique leading to non-probability sampling was used to disseminate the survey to all ILAE members. Questions revolved around SUDEP communication and counselling. Descriptive statistics were used for analysis.</div></div><div><h3>Results</h3><div>Of 58 respondents from 271 ILAE members, 43.1 % respondents had over 15 years of experience, and 44.8 % felt communicating and counseling their PWE of SUDEP is an important aspect of their role. One person (1.7 %) told of discussing SUDEP with all PWE while 22.4 % mentioned they do not talk of SUDEP to any PWE.</div></div><div><h3>Conclusion</h3><div>Despite well established guidelines asserting the need to discuss SUDEP with all PWE, epilepsy professionals in Hungary are not doing so. This is consistent with other European countries on the same subject.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"169 ","pages":"Article 110442"},"PeriodicalIF":2.3000,"publicationDate":"2025-04-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Epilepsy & Behavior","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S1525505025001817","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"BEHAVIORAL SCIENCES","Score":null,"Total":0}

引用次数: 0

Abstract

Background

A leading cause of epilepsy mortality is Sudden Unexpected Death in Epilepsy (SUDEP). All international epilepsy guidelines encourage clinicians to discuss SUDEP with people with epilepsy (PWE). However, implementation of this guidance has been ambiguous depending on the country in question. This is inspite of overwhelming wishes from PWE for their clinician to discuss it with them. There has been no study to inquire into the knowledge, awareness and attitudes towards SUDEP communication in epilepsy professionals in Hungary (population: 9.6 million).

Objective

We investigated neurologists and paediatric neurologists views in Hungary on SUDEP counselling.

Methods

A cross-sectional online survey of 20 questions many Likert style using validated themes was disseminated among doctors working with PWE, registered to the Hungarian chapter of the International League Against Epilepsy (ILAE). A non-discriminatory exponential snowballing technique leading to non-probability sampling was used to disseminate the survey to all ILAE members. Questions revolved around SUDEP communication and counselling. Descriptive statistics were used for analysis.

Results

Of 58 respondents from 271 ILAE members, 43.1 % respondents had over 15 years of experience, and 44.8 % felt communicating and counseling their PWE of SUDEP is an important aspect of their role. One person (1.7 %) told of discussing SUDEP with all PWE while 22.4 % mentioned they do not talk of SUDEP to any PWE.

Conclusion

Despite well established guidelines asserting the need to discuss SUDEP with all PWE, epilepsy professionals in Hungary are not doing so. This is consistent with other European countries on the same subject.

查看原文本刊更多论文

匈牙利神经科医生对癫痫猝死（SUDEP）的认识、态度和知识

背景癫痫死亡的主要原因是癫痫猝死（SUDEP）。所有国际癫痫指南都鼓励临床医生与癫痫患者讨论SUDEP。然而，根据有关国家的情况，这一指导方针的执行情况并不明确。尽管PWE强烈希望他们的临床医生与他们讨论这个问题。目前尚无研究调查匈牙利（人口960万）癫痫专业人员对SUDEP沟通的知识、意识和态度。目的调查匈牙利神经科医生和儿科神经科医生对SUDEP咨询的看法。方法在国际抗癫痫联盟匈牙利分会（ILAE）注册的PWE医生中进行了一项包含20个问题的横截面在线调查。采用非概率抽样的非歧视性指数滚雪球技术将调查结果分发给所有ILAE成员。问题围绕着SUDEP的沟通和咨询。采用描述性统计进行分析。结果在271名ILAE成员的58名受访者中，43.1%的受访者有超过15年的经验，44.8%的受访者认为沟通和咨询他们的PWE是他们角色的重要方面。一个人（1.7%）说他们和所有的PWE讨论过SUDEP，而22.4%的人说他们没有和任何PWE谈论过SUDEP。结论：尽管有完善的指南主张需要与所有PWE讨论SUDEP，但匈牙利的癫痫专业人员并没有这样做。这与其他欧洲国家在同一问题上的看法一致。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

Epilepsy & Behavior 医学-行为科学

CiteScore

5.40

自引率

15.40%

发文量

385

审稿时长

43 days

期刊介绍： Epilepsy & Behavior is the fastest-growing international journal uniquely devoted to the rapid dissemination of the most current information available on the behavioral aspects of seizures and epilepsy. Epilepsy & Behavior presents original peer-reviewed articles based on laboratory and clinical research. Topics are drawn from a variety of fields, including clinical neurology, neurosurgery, neuropsychiatry, neuropsychology, neurophysiology, neuropharmacology, and neuroimaging. From September 2012 Epilepsy & Behavior stopped accepting Case Reports for publication in the journal. From this date authors who submit to Epilepsy & Behavior will be offered a transfer or asked to resubmit their Case Reports to its new sister journal, Epilepsy & Behavior Case Reports.