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
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
seizures or other psychiatric
conditions were excluded.
However, patients with
comorbid depression were
eligible to participate in
A total of 67 patients re-
ceived 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,
and most patients resided with family members or care-
givers. The majority of patients had a long-standing his-
tory of epilepsy; 76% had been diagnosed with epilepsy
for 10 years or longer, and almost 46% of patients had
a history of generalized tonic-clonic seizures. “A history
of tonic-clonic seizures is important, particularly as we
look at risk factor reduction,” Ms. Long said. “We know,
for example, that patients with tonic-clonic seizures, es-
pecially nocturnal intractable tonic-clonic seizures, are
more likely to die from SUDEP.”
A Right to Know
Survey results revealed that 100% of respondents felt it
was their right to be informed about SUDEP. “This was
regardless of participant education, sex, and age,” Ms.
Long reported. “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.”
About 84% of patients also felt that SUDEP disclosure
would encourage them to be more adherent to their
antiepileptic drug regimen, and 87% felt that SUDEP
disclosure would encourage them to avoid factors that
can lower seizure threshold.
Patients who have nocturnal
intractable tonic-clonic seizures
are more likely to die from SUDEP.
Lucretia Long, MS, RN, CNP