To mark SUDEP Action Day 2020, Epilepsy Ireland are announcing the results of a survey of over 300 people with epilepsy on awareness of sudden unexpected death in epilepsy (SUDEP) among people with epilepsy and about communications between them and their healthcare team about SUDEP.
SUDEP is defined as "sudden unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in an individual with epilepsy, with or without evidence of a seizure and excluding documented status epilepticus where post-mortem examination does not reveal a cause for death”. Based on international data, we estimate that there are at least 40 cases of SUDEP in Ireland each year.
The full survey survey report is available for download HERE and at the end of this article. The key findings are also summarised in the image alongside this article.
As a whole, the survey results suggest that people with epilepsy want to know more about SUDEP and have a conversation on this rare aspect of the condition - with 81% of respondents noting that it was important to discuss whether they were at high risk of SUDEP or not.
The results challenge many traditionally held beliefs that people do not want to know about SUDEP or that it can have a negative impact to discuss it. While some respondents do feel this way, it seems that attitudes towards SUDEP among people with epilepsy may have changed over time.
We hope that this survey can help kick-start a new conversation in Ireland about how to communicate SUDEP and improve SUDEP knowledge among people with epilepsy.
On #SUDEPActionDay2020, we encourage people with epilepsy to be aware of this rare aspect of the condition and should you have any questions, please do not hesitate to contact your local Community Resource Officer.
We want to thank Cleidi Hearn, Psychology student at the UCC School of Applied Psychology and the UCC Community-Academic Research Links initiative (CARL) for their assistance on this project.