Everyone Needs to Know More About SUDEP

Photo: Dr. Elizabeth Donner

In this issue of the Making Sense of SUDEP eNewsletter, Dr. Rajesh RamachandranNair debunks the myth that people with epilepsy don’t want to know about SUDEP. Increasingly, research is showing that people with epilepsy, their families and caregivers, do want to know more about SUDEP. They want to know about their risk and how to reduce it.

Unfortunately, there are several potential barriers to open discussions about SUDEP between physicians and patients. Physicians may worry that SUDEP discussions will cause stress to their patients. Some physicians may even find the discussion uncomfortable themselves. A recent study of Canadian pediatricians may have identified another barrier, which is that many pediatricians are unaware that children with epilepsy are at risk of sudden unexpected death.

Through a program of the Canadian Pediatric Society, we surveyed 2570 Canadian pediatricians. Of the 866 pediatricians who responded to our survey about SUDEP, 674 told us they cared for children with epilepsy as part of their practice. Among these pediatricians, only 34% were aware of the term SUDEP and only 57% reported that they knew that children with epilepsy are at an increased risk of sudden unexplained death. More about this study will be presented at the upcoming American Epilepsy Society Annual Meeting, later this month in San Diego.

Why is it important for pediatricians to know about SUDEP? First of all, if physicians don’t know about SUDEP, they can’t talk to patients and families about it.  While some people with epilepsy are treated by neurologists, audits of epilepsy care have demonstrated that only a small number of people with epilepsy get their seizure care from a neurologist. That means that pediatricians and family doctors that provide care to people with epilepsy need to know about SUDEP. Since we know that reducing seizure frequency is the best way to reduce the risk of SUDEP, it is very important that physicians know that ongoing seizures increase risk and treating those seizure can help to reduce that risk.

Furthermore, poor knowledge of SUDEP is a significant obstacle to meaningful research. Studies of coroners and medical examiners in the UK and US have shown that these professionals who investigate deaths are also under-informed about SUDEP. When deaths of people with epilepsy are not identified as SUDEP, such cases cannot be identified or learned from.

November is Epilepsy Awareness Month in the US. Use the opportunity to talk to your physician about SUDEP. Help spread the word. Together we can Make Sense of SUDEP.