A community response: Advocates embrace new AAN/AES SUDEP guideline
TomStanton, Danny Did Foundation
Published July 20, 2017
The new guideline by the American Academy of Neurology (AAN) and the American Epilepsy
Society (AES) on sudden unexpected death in epilepsy (SUDEP) is a landmark. [1] The
communication between medical professionals and patients about SUDEP risk remains
unacceptably low. Tragically, family members often first learn about SUDEP after their
loved one's death. Every patient and parent deserves to know the risks of epilepsy. For
the first time, the AAN and AES recommend that neurologists inform them about SUDEP, the
most common cause of epilepsy-related death. [1]
Generalized tonic-clonic seizures increase SUDEP risk; the greater their
frequency, the greater the risk. [2,3] Minimizing seizures through specialized medical care
and strategies to reduce breakthrough seizures can reduce risk. [2,3] Since SUDEP happens
more often in sleep, [2] nighttime supervision or monitoring may help and should be part
of the patient/provider conversation. While the report assigns a blanket SUDEP risk ratio
to children, [1] certain pediatric populations (children with Dravet syndrome, Dup15q
syndrome, etc.) face a significantly higher risk. [4,5]
All medical professionals should use these recommendations to initiate an honest
and ongoing conversation tailored to their patient's risk. We urgently need accurate
surveillance data and expanded research to understand the mechanisms and save lives.
1. 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;88:1674-1680.
2. Devinsky O, Hesdorffer DC, Thurman DJ, Lhatoo S, Richerson G. Sudden
unexpected death in epilepsy: epidemiology, mechanisms, and prevention. Lancet Neurol
2016;15:1075-1088.
3. Tomson T, Surges R, Delamont R, Haywood S, Hesdorffer DC. Who to target in
sudden unexpected death in epilepsy prevention and how? Risk factors, biomarkers, and
intervention study designs. Epilepsia 2016;57 Suppl 1:4-16.
4. Cooper MS, Mcintosh A, Crompton DE, et al. Mortality in Dravet syndrome.
Epilepsy Res 2016;128:43-47.
5. Friedman D, Thaler A, Thaler J, et al. Mortality in isodicentric chromosome 15
syndrome: The role of SUDEP. Epilepsy Behav 2016;61:1-5.
Author affiliations: TS (Danny Did Foundation); RH (CURE, Citizens United for Research in Epilepsy); PG (Epilepsy Foundation); DF (NASR: North American SUDEP Registry); AG (Autism Speaks); OD (FACES: Finding a Cure for Epilepsy and Seizures); KLR (Tuberous Sclerosis Alliance); VVF (Dup15q Alliance); MAM (Dravet Syndrome Foundation); AS (Autism Science Foundation); ABM (Child Neurology Foundation); IM (Hope For HH).
For disclosures, please contact the editorial office at journal@neurology.org.
The new guideline by the American Academy of Neurology (AAN) and the American Epilepsy Society (AES) on sudden unexpected death in epilepsy (SUDEP) is a landmark. [1] The communication between medical professionals and patients about SUDEP risk remains unacceptably low. Tragically, family members often first learn about SUDEP after their loved one's death. Every patient and parent deserves to know the risks of epilepsy. For the first time, the AAN and AES recommend that neurologists inform them about SUDEP, the most common cause of epilepsy-related death. [1]
Generalized tonic-clonic seizures increase SUDEP risk; the greater their frequency, the greater the risk. [2,3] Minimizing seizures through specialized medical care and strategies to reduce breakthrough seizures can reduce risk. [2,3] Since SUDEP happens more often in sleep, [2] nighttime supervision or monitoring may help and should be part of the patient/provider conversation. While the report assigns a blanket SUDEP risk ratio to children, [1] certain pediatric populations (children with Dravet syndrome, Dup15q syndrome, etc.) face a significantly higher risk. [4,5]
All medical professionals should use these recommendations to initiate an honest and ongoing conversation tailored to their patient's risk. We urgently need accurate surveillance data and expanded research to understand the mechanisms and save lives.
1. 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;88:1674-1680.
2. Devinsky O, Hesdorffer DC, Thurman DJ, Lhatoo S, Richerson G. Sudden unexpected death in epilepsy: epidemiology, mechanisms, and prevention. Lancet Neurol 2016;15:1075-1088.
3. Tomson T, Surges R, Delamont R, Haywood S, Hesdorffer DC. Who to target in sudden unexpected death in epilepsy prevention and how? Risk factors, biomarkers, and intervention study designs. Epilepsia 2016;57 Suppl 1:4-16.
4. Cooper MS, Mcintosh A, Crompton DE, et al. Mortality in Dravet syndrome. Epilepsy Res 2016;128:43-47.
5. Friedman D, Thaler A, Thaler J, et al. Mortality in isodicentric chromosome 15 syndrome: The role of SUDEP. Epilepsy Behav 2016;61:1-5.
Author affiliations: TS (Danny Did Foundation); RH (CURE, Citizens United for Research in Epilepsy); PG (Epilepsy Foundation); DF (NASR: North American SUDEP Registry); AG (Autism Speaks); OD (FACES: Finding a Cure for Epilepsy and Seizures); KLR (Tuberous Sclerosis Alliance); VVF (Dup15q Alliance); MAM (Dravet Syndrome Foundation); AS (Autism Science Foundation); ABM (Child Neurology Foundation); IM (Hope For HH).
For disclosures, please contact the editorial office at journal@neurology.org.