Patient questionnaire regarding sudden unexpected death in epilepsy
Research type
Research Study
Full title
Exploring patients’ opinions of Sudden Unexpected Death in Epilepsy (SUDEP) discussions with their healthcare provider
IRAS ID
141121
Contact email
Sponsor organisation
Royal Free London NHS Foundation Trust
Research summary
Sudden unexpected death in epilepsy is when a patient with epilepsy dies suddenly and prematurely with no other cause found. Each year over 500 patients with epilepsy in the UK die from this devastating event. Although the cause is not fully understood, studies show that achieving the best seizure control possible is the most effective way of reducing this risk.
The National Institute for Health and Care Excellence (NICE) recommend that all patients, family and carers should receive tailored information about the small but significant risk of SUDEP (CG137,2012).
In reality, only 31% of UK neurologists discuss SUDEP with all or the majority of their patients with epilepsy (Morton 2006).This is largely because there is no current guidance on how to assess whether a patient is ready to receive this information, the best time to have this discussion and how this information is best given. This questionnaire based study is the first study to explore these factors from the perspective of the patient and will provide much needed insight into how we can provide our patients with a greater understanding of this serious complication and how to minimise this risk.REC name
London - City & East Research Ethics Committee
REC reference
14/LO/0380
Date of REC Opinion
11 Apr 2014
REC opinion
Further Information Favourable Opinion