SUDEP Action

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Study suggests SUDEP rates in children higher than previously thought


A new review published in the Developmental Medicine and Child Neurology journal has added weight to other study findings that SUDEP rates in children are higher than previously thought.
It was widely suggested that SUDEP affects 1 in 4,500 children each year (UK and beyond). However, this new paper, based on a study from Canada, claims the rates could be much higher – and comparable to SUDEP rates in adults (1.2 per 1,000 people per year).  

SUDEP is thought to be the highest cause of epilepsy-related death for both children and adults, though it is likely these figures are underestimated because not all SUDEP deaths are accurately recorded. This is why SUDEP Action’s bereavement team have a dedicated casework service to support bereaved families through the inquest process, so their loved one’s death is accurately recorded on the death certificate.  

Dr Rajesh RamachandranNair, one of the researchers  on the new paper said: "SUDEP is a major cause of potential years of life lost as it predominantly affects young people. Not talking about or discussing SUDEP is not helping anyone."

This paper, and others previously published, challenge the assumption that SUDEP is less common in children than in adults.

Sammy Ashby, Deputy CEO of SUDEP Action, feels SUDEP is often underestimated amongst the tragic deaths that happen each year, many of which may have been prevented with improved mortality-risk communication and more access to services.  Sammy said: “Every epilepsy death is devastating, and it is important this is recognised so that the language used to discuss epilepsy-mortality risks with people with epilepsy does not minimise potential risks and provide false reassurance but balances this reality with personalised and positive information on how risks can be reduced.” 

Researchers in this latest study highlight key risk factors linked to SUDEP in children, many of which are similar to those already known for adults with epilepsy (and are referenced in the SUDEP and Seizure Safety Checklist and EpSMon app). A lot of these risk factors can be reduced, which means empowering children and their families to address these risk factors is an important factor in preventing SUDEP & epilepsy deaths.   

Sammy Ashby added: “This growing body of evidence highlights the need for a shift in thinking, so SUDEP communication with younger people and their families becomes a mainstream, normal feature of epilepsy care. We, at SUDEP Action, are currently working on a new project to help address this issue and better support children, their families and their health professionals, so they can discuss, review and take positive steps to reduce their risks.”


For more information on epilepsy-mortality/SUDEP risks

For information on children and young people.  

For tips and free tools to tackle risks.