ORCID

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 ofoverwhelming wishes from PWE for their clinician to discuss it with them. There has been no study to inquireinto the knowledge, awareness and attitudes towards SUDEP communication in epilepsy professionals inHungary (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 LeagueAgainst Epilepsy (ILAE). A non-discriminatory exponential snowballing technique leading to non-probabilitysampling 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, and44.8 % 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, epilepsyprofessionals in Hungary are not doing so. This is consistent with other European countries on the same subject.

Publication Date

2025-04-26

Publication Title

Epilepsy and Behavior

Volume

169

ISSN

1525-5050

Acceptance Date

2025-04-18

Deposit Date

2025-04-27

Keywords

Communication, Counselling, Epilepsy harm, SUDEP

Creative Commons License

Creative Commons Attribution 4.0 International License
This work is licensed under a Creative Commons Attribution 4.0 International License.

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