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

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).

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

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.

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.

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.