Parents say epilepsy sudden death discussion is necessary

SAN DIEGO – Parents want to know that epilepsy can rarely prove fatal to children who have the condition, according to researchers from McMaster University in Hamilton, Ont.

It’s long been debated whether to tell parents of the risk of sudden unexplained death in epilepsy (SUDEP). It’s so rare – perhaps 2-4 cases per 10,000 patient-years in children – that clinicians often hold off sharing the information for fear of needlessly upsetting parents, said lead investigator Dr. Rajesh RamachandranNair.

It turns out that parents do want to know. During focus group interviews of 36 parents (15 men and 21 women) of 21 children with mild to severe epilepsy, and one-on-one interviews with 6 parents (2 men and 4 women) who lost 4 children to the condition, parents agreed "unanimously that they wanted to hear about SUDEP," said Dr. RamachandranNair, a pediatric neurologist and epileptologist at McMaster.

"Half of them wanted to know about SUDEP at the diagnosis of epilepsy. The rest thought that there’s a lot of information already at the first visit, so they wanted to hear about SUDEP at the first follow-up visit," he said.

There’s a benefit to telling them. Intractable epilepsy, young adulthood, and male gender are risk factors; awareness among parents – and young adults – that epilepsy can be fatal, especially in those groups, may lead to better treatment compliance, Dr. RamachandranNair said at the annual meeting of the American Epilepsy Society.

Parents are also likely to search the Internet after epilepsy is diagnosed, find out about SUDEP, and overestimate the risk. News that it’s a rare and unlikely occurrence will bring relief, he said.

In his study, 26 (62%) parents had heard about SUDEP and overestimated the risk. They "were emphatic" that they didn’t want to first hear about SUDEP from a pamphlet or an Internet website, but from face-to-face talks with a pediatric neurologist able to answer their questions.

They also wanted to be able to discuss SUDEP with nurses or social workers during follow-up visits, and have written information with credible Web references. Parents also wanted the decision of when to tell their child about the possibility left up to them.

In general, it’s best to bring up SUDEP in the outpatient setting. In the back of every parent’s mind is the possibility that their child might die during a seizure. They’ll probably reveal that concern with subtle clues; they might cry in the exam room or ask if their child will swallow their tongue during a seizure. That’s the time to probe further, and share the true risk of dying from a seizure, he said.

Dr. RamachandranNair said he had no relevant financial disclosures.

SAN DIEGO – Parents want to know that epilepsy can rarely prove fatal to children who have the condition, according to researchers from McMaster University in Hamilton, Ont.

It’s long been debated whether to tell parents of the risk of sudden unexplained death in epilepsy (SUDEP). It’s so rare – perhaps 2-4 cases per 10,000 patient-years in children – that clinicians often hold off sharing the information for fear of needlessly upsetting parents, said lead investigator Dr. Rajesh RamachandranNair.

It turns out that parents do want to know. During focus group interviews of 36 parents (15 men and 21 women) of 21 children with mild to severe epilepsy, and one-on-one interviews with 6 parents (2 men and 4 women) who lost 4 children to the condition, parents agreed "unanimously that they wanted to hear about SUDEP," said Dr. RamachandranNair, a pediatric neurologist and epileptologist at McMaster.

"Half of them wanted to know about SUDEP at the diagnosis of epilepsy. The rest thought that there’s a lot of information already at the first visit, so they wanted to hear about SUDEP at the first follow-up visit," he said.

There’s a benefit to telling them. Intractable epilepsy, young adulthood, and male gender are risk factors; awareness among parents – and young adults – that epilepsy can be fatal, especially in those groups, may lead to better treatment compliance, Dr. RamachandranNair said at the annual meeting of the American Epilepsy Society.

Parents are also likely to search the Internet after epilepsy is diagnosed, find out about SUDEP, and overestimate the risk. News that it’s a rare and unlikely occurrence will bring relief, he said.

In his study, 26 (62%) parents had heard about SUDEP and overestimated the risk. They "were emphatic" that they didn’t want to first hear about SUDEP from a pamphlet or an Internet website, but from face-to-face talks with a pediatric neurologist able to answer their questions.

They also wanted to be able to discuss SUDEP with nurses or social workers during follow-up visits, and have written information with credible Web references. Parents also wanted the decision of when to tell their child about the possibility left up to them.

In general, it’s best to bring up SUDEP in the outpatient setting. In the back of every parent’s mind is the possibility that their child might die during a seizure. They’ll probably reveal that concern with subtle clues; they might cry in the exam room or ask if their child will swallow their tongue during a seizure. That’s the time to probe further, and share the true risk of dying from a seizure, he said.

Dr. RamachandranNair said he had no relevant financial disclosures.

SAN DIEGO – Parents want to know that epilepsy can rarely prove fatal to children who have the condition, according to researchers from McMaster University in Hamilton, Ont.

It’s long been debated whether to tell parents of the risk of sudden unexplained death in epilepsy (SUDEP). It’s so rare – perhaps 2-4 cases per 10,000 patient-years in children – that clinicians often hold off sharing the information for fear of needlessly upsetting parents, said lead investigator Dr. Rajesh RamachandranNair.

It turns out that parents do want to know. During focus group interviews of 36 parents (15 men and 21 women) of 21 children with mild to severe epilepsy, and one-on-one interviews with 6 parents (2 men and 4 women) who lost 4 children to the condition, parents agreed "unanimously that they wanted to hear about SUDEP," said Dr. RamachandranNair, a pediatric neurologist and epileptologist at McMaster.

"Half of them wanted to know about SUDEP at the diagnosis of epilepsy. The rest thought that there’s a lot of information already at the first visit, so they wanted to hear about SUDEP at the first follow-up visit," he said.

There’s a benefit to telling them. Intractable epilepsy, young adulthood, and male gender are risk factors; awareness among parents – and young adults – that epilepsy can be fatal, especially in those groups, may lead to better treatment compliance, Dr. RamachandranNair said at the annual meeting of the American Epilepsy Society.

Parents are also likely to search the Internet after epilepsy is diagnosed, find out about SUDEP, and overestimate the risk. News that it’s a rare and unlikely occurrence will bring relief, he said.

In his study, 26 (62%) parents had heard about SUDEP and overestimated the risk. They "were emphatic" that they didn’t want to first hear about SUDEP from a pamphlet or an Internet website, but from face-to-face talks with a pediatric neurologist able to answer their questions.

They also wanted to be able to discuss SUDEP with nurses or social workers during follow-up visits, and have written information with credible Web references. Parents also wanted the decision of when to tell their child about the possibility left up to them.

In general, it’s best to bring up SUDEP in the outpatient setting. In the back of every parent’s mind is the possibility that their child might die during a seizure. They’ll probably reveal that concern with subtle clues; they might cry in the exam room or ask if their child will swallow their tongue during a seizure. That’s the time to probe further, and share the true risk of dying from a seizure, he said.

Dr. RamachandranNair said he had no relevant financial disclosures.