Anew guideline codeveloped by the American Acad- emy of Neurology and the American Epilepsy Society is intended to aid clinicians as they counsel patients about SUDEP. The practice guideline, published
in the April 25 issue of Neurology, provides information
about SUDEP incidence in different epilepsy populations, data about risk factors, and recommendations for
“Our guideline brings clarity to the [SUDEP] discussion, giving health care providers practical information they can use to help people with epilepsy reduce
their risk,” said Cynthia Harden, MD, Director of Epilepsy Services for the Mount Sinai Health System in
New York City.
A panel of experts searched the MEDLINE and
Embase databases from the earliest available article to
November 2010. An identical search was performed
in April 2015 for articles published since November
2010. The keywords for both searches were “SUDEP”
and other traditional medical subheadings for epilepsy
(eg, “epilepsy/abnormalities,” “epilepsy/drug effects,” or
After reviewing more than 1,000 abstracts, the panel
selected 70 relevant articles. The team then conducted
a systematic review and developed conclusions using
the modified Grading Recommendations Assessment,
Development, and Evaluation process. All recommendations were made by consensus.
Incidence rates were based on 12 Class I studies.
The systematic review found that SUDEP affects one in
4,500 children with epilepsy per year. Based on these
findings, the experts recommend that clinicians inform
parents or guardians about this low risk of SUDEP in
children (Level B). In addition, the panel recommends
that clinicians inform adult patients about the small risk
of SUDEP, which typically affects one in 1,000 adults
with epilepsy annually (Level B).
The panel also found that generalized tonic-clonic
seizures, which involve convulsions and loss of consciousness, are a major risk factor for SUDEP. In addition, they noted that patients who have three or more
of these seizures per year have a 15-fold increased risk
of SUDEP. To reduce this risk, clinicians are advised to
manage epilepsy therapies actively in these patients to
reduce seizures (Level B).
The guideline also recommends nocturnal supervision or other nocturnal precautions for patients who experience frequent generalized tonic-clonic seizures and
nocturnal seizures (Level C). Furthermore, the presence
of an additional person age 10 or older in the bedroom
is associated with a decreased SUDEP risk. If individualized epilepsy and psychosocial circumstances permit,
such a person should be present, said the panel. Providing nighttime observation might be overly burdensome
or intrusive for some patients, the authors added.
Finally, clinicians are advised to inform patients that
seizure freedom, especially freedom from generalized
tonic-clonic seizures, is strongly associated with a decreased risk of SUDEP (Level B). The panel also analyzed
other SUDEP risk factors (eg, lamotrigine use in women,
heart rate variability, and male gender), but too little
evidence was available to support recommendations.
“Research to identify preventable risk factors should
be supported and encouraged so that future clinical trials will be conducted to reduce SUDEP occurrence,”
said Dr. Harden. NR
Harden C, Tomson T, Gloss D, et al. Practice guideline summary: Sudden
unexpected death in epilepsy incidence rates and risk factors: Report of the
Guideline Development, Dissemination, and Implementation Subcommittee
of the American Academy of Neurology and the American Epilepsy Society.
Neurology. 2017;88( 17):1674-1680.
Guideline May Enhance
Conversations About SUDEP
The authors advise clinicians to inform patients that seizure freedom is strongly
associated with decreased risk of SUDEP.