Guidelines Needed for Providers Concerning if, When and How to Discuss SUDEP with Parents/Caregivers

Reports on parent study and provider surveys in Canada and the U.S.

Newswise — San Diego, December 2 – Surveys of healthcare providers in the U.S. and Canada presented today at the American Epilepsy Society (AES) 66th Annual Meeting have found wide variability in practices concerning discussion with patients and caregivers about Sudden Unexpected Death in Epilepsy (SUDEP), as well as a lack of awareness among some providers of the relative risk for SUDEP in children who have epilepsy. Results of these surveys support the need for SUDEP education and the creation of practice guidelines to encourage SUDEP discussion and assist providers in counseling families about this tragic, though rare, epilepsy outcome.

Discussions about SUDEP may be discomforting for physicians and potentially distressing for patients and caregivers. Patients with the highest risk for SUDEP can be identified, which raises the question of whether to inform only families of patients at high risk, or to counsel all families, since SUDEP can happen to anyone with epilepsy. Patients and families occasionally have a negative reaction to this topic being broached with them. On the other hand, uninformed families who experience SUDEP in a loved-one typically express dismay and occasionally great distress at not having been counseled about SUDEP.

Of more than 1,000 respondents to the survey of neurologists in the U.S. and Canada, fewer than 7% report they discuss SUDEP with nearly all of their patients and parent/caregivers. Another 11.6% report having never discussed it. Factors that predicted whether SUDEP was discussed nearly all of the time were the annual number of epilepsy patients seen, and if the respondent had a SUDEP case within the past 24 months. Perceived negative reactions to SUDEP discussions are common. But more experienced neurologists are less likely to encounter negative reactions than colleagues with fewer years of practice. (Abstract #2.324)

“That years of practice is associated with a decreased perception of a negative reaction among their patients, suggests there may be ways to frame SUDEP discussion that minimizes patient and caregiver distress,” says lead study author Daniel Friedman, M.D. Dr. Friedman is Assistant Professor and Director of the ICU Epilepsy Monitoring Service, and Director of the Epilepsy Consult Service at the New York University Langone Medical Center.

What parents want to knowTo determine parent preferences on the best way to approach the issue of SUDEP with families, researchers at McMaster University in Hamilton, Ontario, Canada, conducted one-on-one interviews and focus group studies with parents who lost children to SUDEP and with parents of children with new onset, mild and moderate to severe epilepsy. Nearly two-third of parents (63%) had previously heard of SUDEP, but could not describe its meaning and overstated the risk. (Abstract #2.342) Experts familiar with the study describe this a very important finding. That families overestimate the risk of SUDEP, suggests that families worry more when physicians do not inform them of the true facts surrounding SUDEP.

Parents were emphatic that they should not first learn about SUDEP from a pamphlet or the Internet. Regardless of the degree of seizure severity, parents were unanimous in feeling that routine counseling about SUDEP should be provided by pediatric neurologists. They preferred that discussion should occur in a face-to-face interaction during the appointment when the diagnosis of epilepsy is first shared with the parents.

“Some parents felt it is important for neurologists to emphasize that SUDEP is rare and the message of risk should be balanced with one of hope,” said study author Rajesh RamachandranNair, M.D., a pediatric neurologist and epileptologist at McMaster University Children’s Hospital. “The parent group endorsed receiving written information about SUDEP to reinforce information shared by the neurologist. Parents agreed also that it is the parents’ decision on whether, when, where and how to inform the child about the risk of SUDEP.”

Dr. Nair said further that the study results will serve as valuable input in the development of practice guidelines for counseling parents of children with epilepsy. Some providers unaware of SUDEP riskIn a related study reported at the AES Annual Meeting, Canadian researchers found there is poor awareness of SUDEP among pediatricians, even though more than three-fourths of pediatricians who responded also reported providing care for children with epilepsy. The study by researchers from the University of Toronto, the Hospital for Sick Children, Toronto, and the University of Calgary, was based on a 10-question paper survey administered to more than 2,500 physicians enrolled in the Canadian Pediatric Surveillance Program (CPSP) operated by the Canadian Pediatric Society. (Abstract #1.159)

The purpose of the survey was to determine whether a gap in SUDEP knowledge among providers exists and to inform strategies for a prospective study of how often SUDEP actually occurs in children. Very little data on SUDEP incidence in children exists. The limited information that is available suggests that incidence rates for children are lower than the incidence in adults. However, many epilepsy experts feel that the incidence of SUDEP in children is underestimated. The discrepancy between published rates and what might be more realistic higher incidence estimates is believe to be due in part to insufficient awareness of SUDEP among both healthcare providers and people affected by epilepsy.

Approximately one-third of providers surveyed responded to the questionnaire. Nearly four in five reported having cared for children with epilepsy in the preceding 24 months. Of these, just over half (56%) had known before the survey that children with epilepsy are at greater risk of sudden unexplained death compared with children without epilepsy. And, only one-third (33%) of pediatricians with epilepsy patients were aware of the term SUDEP.

“The survey identifies poor awareness of SUDEP among Canadian pediatricians, “ said Elizabeth Donner, M.D., pediatric epileptologist at the Hospital for Sick Children and Associate Professor at the University of Toronto. “It highlights the need for educational initiatives to support future studies in SUDEP case collection and prospective surveillance of SUDEP in children to achieve a more accurate assessment of its impact on the pediatric epilepsy population.”

About the American Epilepsy SocietyThe American Epilepsy Society, based in West Hartford, CT, seeks to advance and improve the treatment of epilepsy through the promotion of research and education for healthcare professionals. Society membership includes epileptologists and other medical and allied healthcare professionals, and scientists concerned with the care of people who have seizures and epilepsy.

Editors Note: Authors of these studies will be available at a press briefing at 1:00 pm (PDT), Sunday, December 2, in the onsite press room, Room 1A, upper level of the San Diego Convention Center. The call-in number for off-site journalists is 1-866-740-1260, passcode 5867509#.

# # #