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Parents Want Neurologists to Inform Them About Sudden Unexplained Death in Epilepsy

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SAN DIEGO—Parents want to know that epilepsy can rarely prove fatal to children who have the condition, according to research presented at the 66th Annual Meeting of the American Epilepsy Society.

Neurologists have long debated whether to tell parents about their children’s risk of sudden unexplained death in epilepsy (SUDEP). The event is so rare—occurring in children perhaps two to four times per 10,000 patient-years—that clinicians often hesitate to share the information, for fear of needlessly upsetting parents, said lead investigator Rajesh RamachandranNair, MD, Pediatric Neurologist and Epileptologist at McMaster Children’s Hospital in Hamilton, Canada.

Nevertheless, parents have expressed a desire to know more about the risk of SUDEP. During focus group interviews of 36 parents (15 men) of 21 children with mild to severe epilepsy and one-on-one interviews with six parents (two men) who lost four children to the condition, parents agreed “unanimously that they wanted to hear about SUDEP,” said Dr. RamachandranNair.

“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.

Informing parents may be beneficial. Intractable epilepsy, young adulthood, and male gender are risk factors for SUDEP. Awareness among parents and young adults that epilepsy can be fatal, especially in those groups, may lead to better treatment compliance, said Dr. RamachandranNair.

After their child is diagnosed with epilepsy, parents are likely to search the Internet, find out about SUDEP, and overestimate the risk. A neurologist’s assurance that SUDEP is a rare and unlikely occurrence will come as a relief, said Dr. RamachandranNair.

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 a website, but from face-to-face talks with a pediatric neurologist able to answer their questions, Dr. RamachandranNair remarked.

Parents also wanted the opportunity to discuss SUDEP with nurses or social workers during follow-up visits and have written information with credible Web references. Parents preferred to make the decision of when to tell their child about the possibility of SUDEP.

The best procedure may be to discuss SUDEP in the outpatient setting, said Dr. RamachandranNair.

—M. Alexander Otto
IMNG Medical News

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