Sudden unexpected death in epilepsy (SUDEP) is concerning and many—even
those with seizure disorders—may not be aware of this condition. New
research published in Epilepsia, a journal published by Wiley on behalf
of the International League Against Epilepsy (ILAE), reports that 76% of
caregivers are more likely to have heard of SUDEP compared with 65% of
patients with epilepsy.
Dr. Barbara Kroner, an epidemiologist with RTI International in
Rockville, Maryland and lead author of the study says, “When someone
with epilepsy dies suddenly we want to understand why. Our research
calls attention to SUDEP and provides important knowledge to help
neurologists have open discussions with patients, especially those at
greatest risk of epilepsy–related death.”
While it is obviously an overwhelming loss, SUDEP is uncommon, occurring
in about 1 in 1,000 individuals with epilepsy each year. However, a
study by Dr. David Thurman and colleagues also published in this issue
of Epilepsia suggests that “comparing years of potential life lost from
SUDEP with selected other neurologic diseases, SUDEP ranks second only
to stroke.” Moreover previous evidence shows that only 5% of
neurologists discuss SUDEP with their all patients and 69% discuss it
with few or none of their patients. One of the main reasons for this
lack of communication is that doctors do not want to raise fears or
anxiety in patients.
For the Kroner et al study, researchers surveyed close to 1,400 patients
with epilepsy and more than 600 caregivers. Surveys were conducted via
the web or in a clinical setting. The survey included questions about
type of seizure, epilepsy treatment plans, fear of death, and
familiarity with SUDEP. If respondents had not heard of SUDEP, a
definition was provided, and questions about the initial reaction to the
condition were asked.
Findings indicate that internet survey respondents were more likely to
have heard about SUDEP than patients in the clinical setting at 71% and
39%, respectively. Those caring for epilepsy patients were more likely
than the epilepsy patient to have heard about SUDEP (76% vs. 65%), with
prior awareness associated with increased education level, more severe
and longer epilepsy duration, and having an epilepsy specialist as the
primary care provider.
Fear, anxiety, and sadness were often reported by epilepsy patients at
caregivers upon first learning about SUDEP, with most wanting to discuss
these feelings with their doctor. Knowledge of SUDEP and increase in
epilepsy severity escalated the concern of death among patients and
caregivers. However half of respondents thought that knowledge of SUDEP
would influence management of epilepsy.
“Preventing seizures in patients with difficult to treat epilepsy may
help avert sudden death,” concludes Dr. Kroner. “It’s important for the
neurological community to continue to focus our attention on SUDEP,
determining which epilepsy patients are at greatest risk and how best to
educate them and their caregivers.”
Drs. Gary Mathern and Astrid Nehlig, Editors-in-Chief of Epilepsia,
along with Associate Editor, Dr. Dale Hesdorffer agree, “SUDEP continues
to gain considerable attention, with increasing pressure from the
epilepsy community to encourage dialog between clinicians, patients and
their families. In a series of SUDEP articles we start this important
conversation and invite readers to participate in a SUDEP survey at http://surveys.verticalresponse.com/a/show/1539433/a6bed9de39/0.
Together we can advance understanding of SUDEP and how best to
communicate with those challenged by this tragic outcome.”
Dawn Peters
ScienceNewsroom@Wiley.Com
+1 781-388-8408