Sudden unexpected death in epilepsy (SUDEP): Don’t ask, don’t tell?
Morton B, Richardson A, and Duncan S (2006) Sudden unexpected death in epilepsy (SUDEP): Don’t ask, don’t tell? J Neurol Neurosurg Psychiatry 77:2 199–202.
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.
- Survey of British neurologists to determine when they discuss SUDEP with patients, with 383 respondents. 4.7% discussed it with all patients, 26% with a majority, 61% with a few, and 7.5% with none. Patient quetions about SUDEP was one of the most common reasons for the discussion. Neurologists’ reports of patient reactions indicated many reacted with equanimity but some became very distressed, and some patients stated that they didn’t want to know about SUDEP.