Abstract
Objective: To determine the incidence rates of sudden unexpected death in epilepsy (SUDEP) in different epilepsy populations and address the question of whether risk factors for SUDEP have been identified.
Methods: Systematic review of evidence; modified Grading Recommendations Assessment, Development, and Evaluation process for developing conclusions; recommendations developed by consensus.
Results: Findings for incidence rates based on 12 Class I studies include the following: SUDEP risk in children with epilepsy (aged 0–17 years) is 0.22/1,000 patient-years (95% confidence interval [CI] 0.16–0.31) (moderate confidence in evidence). SUDEP risk increases in adults to 1.2/1,000 patient-years (95% CI 0.64–2.32) (low confidence in evidence). The major risk factor for SUDEP is the occurrence of generalized tonic-clonic seizures (GTCS); the SUDEP risk increases in association with increasing frequency of GTCS occurrence (high confidence in evidence).
Recommendations: Level B: Clinicians caring for young children with epilepsy should inform parents/guardians that in 1 year, SUDEP typically affects 1 in 4,500 children; therefore, 4,499 of 4,500 children will not be affected. Clinicians should inform adult patients with epilepsy that SUDEP typically affects 1 in 1,000 adults with epilepsy per year; therefore, annually 999 of 1,000 adults will not be affected. For persons with epilepsy who continue to experience GTCS, clinicians should continue to actively manage epilepsy therapies to reduce seizures and SUDEP risk while incorporating patient preferences and weighing the risks and benefits of any new approach. Clinicians should inform persons with epilepsy that seizure freedom, particularly freedom from GTCS, is strongly associated with decreased SUDEP risk.
GLOSSARY
- AAN=
- American Academy of Neurology;
- AED=
- antiepileptic drug;
- CI=
- confidence interval;
- GTCS=
- generalized tonic-clonic seizures;
- SUDEP=
- sudden unexpected death in epilepsy
Footnotes
Go to Neurology.org for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.
Approved by the Guideline Development, Dissemination, and Implementation Subcommittee on November 7, 2015; by the AAN Practice Committee on January 17, 2016; by the AES Guidelines Committee on November 11, 2016; by the AES Council on Clinical Activities on November 11, 2016; by the AES Executive Committee on November 14, 2016; by the AES Board of Directors on November 30, 2016; and by the AAN Institute Board of Directors on January 11, 2017. This practice guideline was endorsed by the International Child Neurology Association on August 27, 2016.
Supplemental data at Neurology.org
Editorial, page 1598
- Received June 24, 2016.
- Accepted in final form November 2, 2016.
- © 2017 American Academy of Neurology
Disputes & Debates: Rapid online correspondence
- Author response: 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 Ep
- Reader response: 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 Ep
- A community response: Advocates embrace new AAN/AES SUDEP guideline
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