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Cited by 632Epilepsy research and treatmentCardiac electrophysiology and arrhythmiasCardiac Arrest and Resuscitation

Unifying the definitions of sudden unexpected death in epilepsy

Open access
Nashef, Lina, So, Elson L., Ryvlin, Philippe, Tomson, Torbjörn·2012·Epilepsia
DOI 10.1111/j.1528-1167.2011.03358.x
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Abstract

Summary: Sudden unexpected death in epilepsy (SUDEP) is a category of death in people with epilepsy occurring in the absence of a known structural cause of death and is most likely heterogeneous with regard to mechanisms and circumstances. SUDEP is particularly difficult to investigate in research studies for several reasons, including its relatively low incidence, its unpredictable occurrence often in unwitnessed settings, and its low rate of complete autopsy examinations. Over the past two decades, two complementary definitions have been used in most SUDEP studies, but often with variations. We propose here a unified SUDEP definition and classification to resolve current ambiguities and to retrieve cases that would not have been further studied if the previous definitions were used. The proposed Unified SUDEP Definition and Classification contains, in addition to concepts inherent in the previous definitions, nine main recommendations. (1) The word “unexpected,” and not the word “unexplained,” should be uniformly used in the term SUDEP . (2) The SUDEP category should be applied when appropriate, whether or not a terminal seizure is known to have occurred. (3) The “Possible SUDEP” category should be used only for cases with competing causes of death, with cases left unclassified when data are insufficient to reasonably permit their classification. (4) Cases that would otherwise fulfill the definition of SUDEP should be designated as “SUDEP Plus” when evidence indicates that a preexisting condition, known before or after autopsy, could have contributed to the death, which otherwise is classified as SUDEP (e.g., coronary insufficiency with no evidence of myocardial infarction or long‐QT syndrome with no documented primary ventricular arrhythmia leading to death). (5) To be considered SUDEP, the death should have occurred within 1 h from the onset of a known terminal event. (6) For status epilepticus as an exclusion criterion for SUDEP, the duration of seizure activity should be 30 min or more. (7) A specific category of SUDEP due to asphyxia should not be designated, the distinction being largely impractical on circumstantial or autopsy evidence, with more than one mechanism likely to be contributory in many cases. (8) Death occurring in water but without circumstantial or autopsy evidence of submersion should be classified as “Possible SUDEP.” If any evidence of submersion is present, the death should not be classified as SUDEP. (9) A category of “Near‐SUDEP” should be agreed to include cases in which cardiorespiratory arrest was reversed by resuscitation efforts with subsequent survival for more than 1 h. Scenarios that demonstrate the basis for each SUDEP category are described. If disagreement exists about which category fits a particular case, we suggest the use of consensus decision by a panel of informed reviewers to adjudicate the classification of the case.

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  • The primary cause of death in patients with DEEs is sudden unexpected death in epilepsy (SUDEP).

    “The primary cause of death is sudden unexpected death in epilepsy (SUDEP) 17 ; other causes include cerebral oedema following status epilepticus 18 , chest infections and accidental causes 19 .”

    From Developmental and epileptic encephalopathies (2024) · cites this paper as [17]

    The Summary identifies SUDEP as a category of death in people with epilepsy, and Box 3 defines which deaths qualify. The paper does not establish that SUDEP is the primary cause of death in patients with developmental and epileptic encephalopathies (DEEs); searches for DEEs and comparative causes of death found no such finding. (LLM, conf=0.83)

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Authors
Nashef, L., So, E. L., Ryvlin, P., & Tomson, T.
Affiliations
  • King's College Hospital (GB)
  • Mayo Clinic (US)
  • Lyon 1 Université (FR)
  • Karolinska Institutet (SE)
Corresponding author
So, Elson L.
ORCID
Venue
Epilepsia
Publisher
Wiley
Published
2011-12-22
Volume
53
Issue
2
Pages
227-233
ISSN
  • 0013-9580 (ISSN-L)
  • 1528-1167
DOI
10.1111/j.1528-1167.2011.03358.x
OpenAlex
W1549808427
Cited by
632
References
26
Citations by year
2026: 34 · 2025: 54 · 2024: 39 · 2023: 57 · 2022: 38 · 2021: 70 · 2020: 69 · 2019: 59 · 2018: 55 · 2017: 39 · 2016: 30 · 2015: 35 · 2014: 24 · 2013: 20 · 2012: 8
FWCI
11.60
Type
journal article
Language
en
Open access
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Epilepsia (publishedVersion)
  • PubMed (publishedVersion)
Topics
  • Health Sciences › Medicine › Psychiatry and Mental health › Epilepsy research and treatment
  • Health Sciences › Medicine › Cardiology and Cardiovascular Medicine › Cardiac electrophysiology and arrhythmias
  • Health Sciences › Medicine › Emergency Medicine › Cardiac Arrest and Resuscitation
Keywords
sudden unexpected death in epilepsy, status epilepticus, cardiac arrest, SUDEP incidence, SUDEP risk factors, SUDEP prevention
MeSH terms
Death, Sudden, Epilepsy, Humans

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