Structured discussions about SUDEP risk could help to save lives

Posted Jul 1 2016 in Living with epilepsy

New research, published in the Journal of Neurology, suggests that most risk factors associated with sudden unexpected death in epilepsy (SUDEP) are modifiable, and that structured, person-centred discussions between doctors and patients could help to save lives.

During the study, a team of researchers analysed data collected over nine continuous years, between 2004 and 2012, in Cornwall. They uncovered 93 deaths related to epilepsy, of which 48 were classed as SUDEP.

The team applied the SUDEP and Seizure Safety Checklist (a set of 17 evidence-based risk factors developed to communicate individual SUDEP risk to people with epilepsy) to the 48 people who had died. In order to determine how strongly these factors were associated with SUDEP risk, they also applied the checklist to 220 people living with epilepsy who attended local epilepsy clinics (the non-SUDEP group).

There were significant differences between the two groups (SUDEP and non-SUDEP) across nine of the 17 factors, seven of which were shown to be potentially modifiable. These were: unclear treatment history, poor adherence to medication, subtherapeutic medication levels, alcohol misuse, no night surveillance, sleeping in the prone position and increasing seizure frequency.

These results help to validate the SUDEP and Seizure Safety Checklist, and they support earlier evidence about SUDEP risk factors. The findings also suggest that person-centred discussions, particularly about modifiable SUDEP risk factors, could help to save lives.

SUDEP is the most common cause of death and people with epilepsy, accounting for approximately 600 deaths in the UK each year.

Author: Dr Özge Özkaya

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