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. 2006 Feb;77(2):199-202.
doi: 10.1136/jnnp.2005.066852.

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

B Morton  1 , A Richardson, S Duncan
Affiliations

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

B Morton et al. J Neurol Neurosurg Psychiatry. 2006 Feb.

Abstract

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.

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Conflict of interest statement

Competing interests: Dr Duncan has received speaker's fees from Sanofi‐Synthalabo, a travel grant from UCB Pharma, and two educational grants from Janssen Pharmacueticals and UCB Pharma

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