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Study suggests epilepsy deaths are not decreasing despite advances in treatments

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A study presented at the European Academy of Neurology annual congress has found that mortality rates for epilepsy-related deaths did not decrease between 2009 and 2015 despite advances in treatment during this time.

The study was conducted by Dr. Gashirai Mbizvo from the University of Edinburgh who analysed anonymous data from healthcare settings around Scotland of patients who had died between 2009 & 2015.

This data identified 2,149 epilepsy related deaths. The most common causes of death within the study were sudden unexpected death in epilepsy (SUDEP), aspiration pneumonia, cardiac arrest, congenital malformation and alcohol-related deaths. Epilepsy deaths increased from 6.8 per 100,000 in 2009 to 9.1 per 100,000 in 2015.

The research also concluded that young adults are most at risk of epilepsy-related death. Those aged between 16 and 24 have a six-fold increased risk of epilepsy-related death. Critically, it concluded that as many as 78% of epilepsy-related deaths under the age of 55 years were potentially avoidable.

Dr Mbizvo commented,  "Epilepsy patients are at a higher risk of early death than the general population, but reasons for this are unclear. We hope that we can use this data to learn lessons and reduce the burden of epilepsy-related deaths in the future, many of which we believe are likely to be avoidable. Highlighting such risk factors, and identifying those that could be prevented, might lead to changes in epilepsy care and, ultimately, fewer epilepsy-related deaths in the future."

Further reading on this study can be found by visiting the Journal of Neurology, Neurosurgery & Psychiatry website. The study, known as the Scottish Epilepsy Deaths Study (SEDS) is continuing.

While it is important to remember that the risk of SUDEP is low, the findings of this study highlight the importance of being SUDEP-aware, the importance of epilepsy self-management, achieving and maintaining seizure control, and taking all reasonable steps to reduce risks. The better epilepsy is controlled, the more the risk of SUDEP is reduced. You can learn more about this by visiting the 'SUDEP' section of our website. 

Should you have any questions or concerns regarding SUDEP, please do not hesitate to get in touch with your local Community Resource Officer. You can find their details in the 'Our Services' section of our website.