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J Neurol Neurosurg Psychiatry. 2006 Feb;77(2):199-202.

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

Author information

  • 1Department of Neurology, Greater Manchester Neurosciences Centre, Hope Hospital, Stott Lane, Salford, Manchester M6 8 HD, UK.

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.

PMID:
16421121
PMCID:
PMC2077594
DOI:
10.1136/jnnp.2005.066852
[PubMed - indexed for MEDLINE]
Free PMC Article
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