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Sudden unexpected death in epilepsy (SUDEP): don’t ask, don’t tell?

Department of Neurology, Greater Manchester Neurosciences Centre, Hope Hospital, Stott Lane, Salford, Manchester, UK

Correspondence to:
Correspondence to:
Dr S Duncan
Department of Neurology, Greater Manchester Neurosciences Centre, Hope Hospital, Stott Lane, Salford, Manchester M6 8 HD, UK; susanduncan{at}compuserve.com

Background: The National Institute for Clinical Excellence in the UK has issued guidelines stating all individuals with epilepsy be given information about sudden unexpected death in epilepsy (SUDEP).

Methods: We conducted a survey of current practice among UK neurologists, using a questionnaire sent to all practising neurologists in the UK listed on the Association of British Neurologists database, asking under what circumstances they told patients about SUDEP.

Results: Of the validated respondents, 5% discussed SUDEP with all patients, 26% with a majority, 61% with a few, and 7.5% with none. The commonest reasons for SUDEP to be discussed were the patient asking about it and the neurologist counselling people with known risk factors for SUDEP.

Conclusions: The variation we found, although not necessarily in tune with the guidelines, reflects the variation in patients’ need for knowledge about their condition.

Abbreviations: NICE, National Institute for Clinical Excellence; SIGN, Scottish Intercollegiate Guidelines Network; SpR, specialist registrar; SUDEP, sudden unexpected death in epilepsy

Keywords: epilepsy; SUDEP

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