A SUPPLEMENT TO
Do Patients Want to Know About SUDEP?
Some patients felt that SUDEP disclosure should occur at first diagnosis.
BOSTON—Patients with epilepsy not only want to know
about sudden unexpected death in epilepsy (SUDEP),
they feel it is their right to be informed, according to survey results presented at the 69th Annual Meeting of the
American Academy of Neurology. “The most astonishing finding of our study was that 100% of participants
felt it was their right to be informed about SUDEP,” said
Lucretia Long, MS, RN, CNP, Clinical Assistant Professor
of Neurology and an epilepsy nurse practitioner at Ohio
State University in Columbus.
Patients with epilepsy are 24 times more likely to
die suddenly, compared with age-matched controls.
SUDEP is responsible for 2% to 18% of epilepsy-related
deaths and is the most common epilepsy-related cause
of death, particularly in patients with intractable seizures. SUDEP actually takes more lives annually in the
US than sudden infant death syndrome (SIDS).
The decision to discuss SUDEP with patients has
created much debate over the years. “Many physicians
are hesitant to discuss this due to their perception of
imposing unnecessary fear, while others argue that
SUDEP disclosure could aid in improving patient compliance and also encourage patients to modify factors
that can lower seizure thresholds,” Ms. Long explained.
The Patient’s Perspective
SUDEP etiology has been studied, as have physician
perspectives on the matter, but limited data exist
regarding patients’ feelings about SUDEP disclosure,
Ms. Long said.
She and colleagues assessed via questionnaire adult
patient feelings and viewpoints associated with SUDEP.
For their study, every third patient at the Comprehensive
Epilepsy Center at the Wexner Medical Center at Ohio
State University was given a one-page SUDEP information sheet. The information sheet is available on www.
epilepsy.com and was developed by the National Epilepsy Foundation of America. Patients who consented
were then asked to complete an eight-item questionnaire assessing their perception of SUDEP disclosure.
To be eligible for the study, patients had to have
a confirmed diagnosis of epilepsy and be able to read
and write English. Those with psychogenic nonepileptic
seizures or other psychiatric conditions were excluded.
However, patients with comorbid depression were eligible to participate in the study.
A total of 67 patients received the handout; 97% of
those patients completed the questionnaire. Fifty-eight
percent were female, the overwhelming majority of
patients had a high school diploma or associate degree,
MAY 2017
Lucretia Long,
MS, RN, CNP
2017 I Highlights From the
AAN
69TH ANNUAL MEETING OF THE AMERICAN ACADEMY OF NEUROLOGY
“Both male and female, young and old,
and those with higher versus lower
education levels all felt that it was their
right to be informed about SUDEP.”
