People with Epilepsy Want to Know About the Risk of SUDEP, Study Suggests

Posted Oct 17 2016 in Living with epilepsy

People with epilepsy want neurologists to inform them about the risk of sudden unexpected death in epilepsy (SUDEP), according to a study published in the scientific journal Epilepsy and Behavior. Those who took part in the study also believed that the optimal timing and setting to provide SUDEP counselling should be determined on a case-by-case basis.

Dr Rajesh Ramachandran Nair and Dr Susan M Jack, at McMaster University, in Ontario, invited 42 people to take part in the study. Their aim was to better understand the views of adults with epilepsy on a) whether the issue of SUDEP should be discussed, and b) when and how this discussion should take place.

A total of 23 people, aged between 18 and 65 years, agreed to participate in the study. Nineteen were interviewed by telephone and four joined a focus group to share their views.

All participants felt that people diagnosed with epilepsy should be informed about SUDEP, and many believed that the best time to receive this information was at diagnosis.

Most subjects thought that the discussion about SUDEP should take place face to face, with a neurologist, and that people should then be given written information (including possible ways of preventing SUDEP) to take home.

Many participants believed that information about SUDEP should be incorporated into the general information given about epilepsy, rather than being provided separately.

SUDEP is the leading cause of disease-related death in people with epilepsy, with an incidence of between 0.9 and 9 per 1000 people per year.

Although published guidelines and position statements from professional organisations recommend routine counselling about SUDEP, research has shown that only a small proportion of neurologists offer this to their patients, because they fear causing anxiety and stress.

Author: Dr Özge Özkaya

 SUDEP Awareness Day is on 23 October 2016, and there are lots of ways in which you can get involved!

Click here to read more stories about living with epilepsy.

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