Clinicians need to do more to educate people with epilepsy about SUDEP

Posted Feb 2 2016 in Living with epilepsy

The families of people who have died from sudden unexpected death in epilepsy (SUDEP) feel that people with epilepsy should be better informed about the risks.

This is according to a new study from Canada’s McMaster University and University of Guelph, which aimed to better understand the experiences of bereaved relatives (through SUDEP), and explore their preferences regarding SUDEP counselling.

SUDEP is a term used to describe the sudden and unforeseen death of a person with epilepsy, where no obvious cause of mortality can be found. Although these cases are connected to seizures, the underlying mechanisms are still not fully understood. It is estimated that one in every 1,000 people with epilepsy is affected by SUDEP.

The research, published in the medical journal Epilepsy & Behavior, involved in-depth one-to-one interviews with 27 adult relatives of 21 people who had passed away as a result of SUDEP. Qualitative methods were used to analyse the information obtained.

A consensus emerged from the interviews that healthcare providers should discuss the risk of SUDEP with their epilepsy patients, and that information about SUDEP should be provided at the time of epilepsy diagnosis, or soon after.

Neurologists were highlighted as being best placed to discuss SUDEP with people during a face-to-face encounter, and it was widely agreed that written information should subsequently be provided.

Regarding the actual discussions about SUDEP, the relatives’ preference was for there to be an emphasis on the risk factors and possible preventive strategies, but also on how rare it is. It was agreed that the appropriate level of information to give should be judged on a case-by-case basis.

The researchers concluded: “The results of this study indicated that bereaved relatives wanted neurologists to inform patients about the risk of SUDEP, with optimal timing and setting of SUDEP counseling determined on a case-by-case basis.”

Posted by Anne Brown

Edited by Epilepsy Research UK

In 2014 Epilepsy Research UK held an international expert workshop entitled ‘SUDEP: Time for Prevention—Evidence and Clinical Translation’, in Oxford. The proceedings of this event are published in a special edition of the scientific journal Epilepsia (Epilepsia, 57 (S1):1-53). To order a copy, please contact us.

Click here to read more stories about living with epilepsy.

 

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