SUDEP Action

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New GP data research builds on existing knowledge about SUDEP & Epilepsy mortality risk factors

Recent research published in the British Medical Journal (BMJ) has shown an increase in epilepsy-related deaths despite the overall number of pre-COVID19 deaths (from all causes) having decreased.

As advances in diagnosing, condition-management and emergency treatment continue to improve medical practice generally, all-cause mortality rates have decreased in the general population. However, this isn’t the case for epilepsy-related deaths, which have actually increased between the 2004-2014 period covered in this latest piece of research led by a team at Kings College London.

With many epilepsy-related deaths known to be potentially preventable, this research, part-funded by SUDEP Action, highlights the importance of raising awareness of epilepsy mortality risk factors in clinical settings and with families. 

With a circulation of 80,000+, publication of this research in the BMJ will ensure that the findings from this important research are raised to the attention of clinicians and policy-makers.

Key findings from the research:

  • While the number of people with epilepsy registered in the GP database decreased by 22% over an 8-year period, the number of deaths in people with epilepsy increased by 69%.
  • The average age of death increased over time, and the data showed increased risk linked with emergency visits and/or emergency admissions, prescription of more than one anti-epileptic drug (which indicates someone has more complex, tricky to control epilepsy) and status epilepticus.
  • For the younger group of people with epilepsy included in the research, emergency visit or emergency admissions, number of medications, and injury were linked with higher risk of death.
  • For all age-groups, seizure freedom was linked to a lower risk of death.

This research adds to existing knowledge about epilepsy mortality risks and the risks highlighted in this research are already included in SUDEP Action’s SUDEP and Seizure Safety Checklist and EpSMon app to ensure clinicians and people with epilepsy have access to up-to-date risk information. These safety tools have been shown to reduce risk in a local population, and SUDEP Action is working hard to make these available as widely as possible.

It is extremely important that risk factors for epilepsy-related death are communicated to and understood by people with epilepsy, their families and their care-givers. Healthcare professionals who see people with epilepsy have a vital role to play in this. Any epilepsy-related death has a devastating impact on bereaved families and friends. Better communication and understanding of risk factors and improved reduction of those risks is critical in helping reduce the number of epilepsy deaths happening each year, each one a tragedy with a long lasting, devastating impact.

SUDEP Action has been producing free, award-winning risk-monitoring resources since 2015 which are recognised as best practice for tackling epilepsy mortality by NHS Rightcare, and the LeDeR and MBBRACE national mortality inquiries. We will continue to work with research partners to improve knowledge in this area and to push for urgent change required to prevent SUDEP and epilepsy-related deaths.

For the free SUDEP and Seizure Safety Checklist (clinical tool):
(also available as a direct download via Emis Health and SystmOne patient record systems)

For the free EpSMon app to support people with epilepsy to monitor their risks:

If you have been bereaved by epilepsy, or know someone who has, please see here for our free specialist bereavement services: