Most Neurologists Avoid SUDEP in Epilepsy Discussions

Pauline Anderson

December 04, 2012

San Diego, California — Only a small minority of neurologists in the United States and Canada discuss sudden unexpected death in epilepsy (SUDEP) with their patients, despite recommendations from the American Epilepsy Society (AES) to do so, according to a new survey.

The electronic survey of 1200 neurologists represented a wide spectrum of practices — new and more seasoned specialists and those with little or extensive experience treating epilepsy. About a quarter of respondents were pediatric neurologists.

SUDEP occurs in about 1 in every 1000 patients with epilepsy per year but less frequently in children (from 0.2 to 0.4 per 1000 patients).

Only 7% of survey respondents said they discuss SUDEP with all of their patients, said lead author Daniel Friedman, MD, assistant professor, director, ICU Epilepsy Monitoring Service, and director, Epilepsy Consult Service, New York University Langone Medical Center, New York City.

The vast majority indicated that they raise the topic with less than half of their patients. About 12% said they never discuss SUDEP with their patients.

Neurologists who treat more than 100 patients with epilepsy in a year are more likely to discuss the topic of SUDEP with their patients, the survey found. Those who had a case of SUDEP in their practice in the last 2 years were also more likely to raise the issue.

The survey was one of several papers focusing on SUDEP presented here at the American Epilepsy Society (AES) 66th Annual Meeting.

Not High Risk

The most common reason given for not discussing the risk for sudden unexpected death was that a patient was not at high risk. The next most common reason was that there is no proven way to prevent SUDEP.

Another reason for avoiding the discussion is fear of causing negative responses, the survey found. About 40% of specialists said they thought patients would react with anxiety if SUDEP were discussed. Another common patient reaction, as perceived by neurologists, would be patient distress.

However, many specialists thought that patients would appreciate a discussion about SUDEP, said Dr. Friedman. "If you truly feel that a patient is not at risk, this may be an opportunity for you to provide some relief."

Dr. Elizabeth Donner

Elizabeth Donner, MD, pediatric epileptologist at the Hospital for Sick Children and associate professor, University of Toronto, Ontario, Canada, agreed. "Patients may have the right to know that their risk is low, and not have to worry every minute that they're going to die."

However, she stressed that "low risk is not no risk," and that most neurologists know of tragic cases of patients perceived to be at low risk who actually died suddenly and unexpectedly.

There are many opportunities to raise the issue of SUDEP, said Dr. Donner. For her, a pediatric neurologist, the opportunity often arises when parents express fear that their child is going to die of a seizure.

Other "windows of opportunity" to raise the risk for unexpected death may be when adherence to medications worsens, when the patient is referred for surgical intervention, or when there are significant lifestyle changes (eg, going off to college). "It looks from the literature that the highest risk for SUDEP is ages 20-40 when are most likely to be living on their own and drinking and not taking their meds," said Dr. Donner.

The survey went out almost immediately after the AES released recommendations about 2 years ago that neurologists discuss SUDEP with patients, so practice patterns since then may have changed, said Dr. Freedman. As well, efforts from advocacy organizations may have succeeded in raising awareness about SUDEP. "So visibility of SUDEP as an entity in the general neurology community may be going up," he said.

Surveys of neurologists in the United Kingdom and Italy have had similar findings, said Dr. Friedman.

Pediatrician Awareness

Dr. Donner participated in another survey presented here that showed poor awareness of SUDEP among Canadian pediatricians. About a third of the 2500 doctors given the survey agreed to participate.

Almost 4 in 5 respondents reported having cared for children with epilepsy in the preceding 2 years. Of these, 56% knew before the survey that children with epilepsy are at greater risk for SUDEP than children without epilepsy. Only about a third (33%) of pediatricians who treat patients with epilepsy were aware of the term SUDEP.

"The reason this is important to neurologists is that the best information we have about how to prevent SUDEP is to optimize epilepsy care," said Dr. Donner in an interview.

"Surgical referral rates for people with epilepsy are too low, referrals of those with drug-resistant epilepsy are too low, and referrals to specialized epilepsy centers are too low," she said. "People providing primary care need to realize that children and adults in their practice are at risk of this most devastating outcome of epilepsy."

Dr. Donner also stressed that the profession can't learn more about SUDEP unless cases are identified. "And for cases to be identified, people working in primary care need to know that it exists."

The survey comes in advance of the roll-out of a Canada-wide pediatric SUDEP registry, said Dr. Donner.

Focus Groups

Another Canadian SUDEP-related study presented here, which used focus groups and one-on-one interviews, showed that in fact parents want to hear about SUDEP and they want to hear about it from the pediatric neurologist.

"Unanimously, irrespective of gender; irrespective of severity of seizures, they all wanted to hear about SUDEP," said study author Rajesh Ramachandran Nair, MD, a pediatric neurologist at McMaster University Children's Hospital, Hamilton, Ontario, Canada.

Half the parents said they wanted to learn about SUDEP when epilepsy was diagnosed and the rest thought it would be better to wait until next follow-up visit, he said.

Parents would prefer to have the discussion "face to face" in an interview with the pediatric neurologist and not through pamphlets and not over the phone, although they do want supplementary information, said Dr. Nair.

And the parents only wanted the discussion once. "They don't want to hear on multiple occasions; [they] just want to hear about it once," said Dr. Nair.

The study also found that almost two thirds of parents of children with epilepsy (63%) had heard of SUDEP but could not describe its meaning, and tended to overestimate the risk.

The researchers have disclosed no relevant financial relationships.

American Epilepsy Society (AES) 66th Annual Meeting. Abstracts 2.342, 2.324, 1.159. Presented December 2, 2012.