New research recently published in the British Medical Journal has reported a significant increase in the prevalence of epilepsy related deaths across an eight-year period.
Researchers from Kings College London assessed data collected from the period 2004 – 2014 which was captured by the UK’s National Clinical Practice Research Datalink. This is a national database in the UK which collects anonymous patient data from GP centres across the UK.
The data identified 70,431 people with epilepsy and a total of 11,241 registered deaths from all causes amongst this patient group.
In their assessment of this data, it was identified that epilepsy related deaths increased by 69% between the first and last year of the study (821 in 2005 to 1,386 in 2013).
By further assessing the patient data, it was found that increased mortality was associated with more difficult to control epilepsy and amongst persons who had frequent emergency department visits who were on more than one medication for their epilepsy. It was also found that in the deaths of people aged under 35, in 45% of cases, epilepsy was listed as a contributing factor (of a total of 161 deaths within this age cohort, 74 had epilepsy as a contributing factor).
Other factors associated with a higher risk of mortality in epilepsy included depression, injuries, dementia, stroke, and a lack of seizure freedom. These have all been highlighted in previous studies on this issue.
The study’s authors have concluded that further studies should focus on identifying people with epilepsy at high risk of an epilepsy related death, while research identifying specific risk factors for young people with epilepsy should also be prioritised.
If you would like to read the full study, you can do by visiting the British Medical Journal’s website.
While this study provides further evidence that more needs to be done to reduce risks when it comes to mortality and epilepsy, it is important to remember that epilepsy related deaths are rare – with an estimated 130 epilepsy-related deaths in Ireland each year. These deaths can be from a number of epilepsy related factors – such as Sudden Unexpected Death in Epilepsy (SUDEP); injury or drowning relating to a seizure; or status epilepticus.
In relation to SUDEP, while there is much we have yet to learn about this rare but devastating aspect of epilepsy, there is still a lot we do know about how to reduce risk. We would encourage people with epilepsy and their families to please familiarise themselves with the risk factors associated with SUDEP by visiting the information resource on our website.
If you need any further information, advice, or support regarding your or your family member’s epilepsy, please do not hesitate to get in touch with your local Community Resource Officer.
Epilepsy Deaths Register & Bereavement Support.
If you are a person who has lost a loved one due to an epilepsy related death, we would ask that when the time is right for you that you please consider inputting their details on the Epilepsy Deaths Register for Ireland. As this study has outlined, further research is required to help reduced the risk of future epilepsy related deaths. By inputting details about the death of a loved one, you could help provide vital information to researchers working to reduce the risk of epilepsy deaths. Visit the the Epilepsy Death Register for Ireland website to begin the process of inputting their details.
If you have been affected by an epilepsy related death, our colleagues in SUDEP Action offer specialised bereavement support. We work closely with SUDEP Action and although they are based in the UK, it does not prevent you have accessing this service. If you would like to talk to someone about your loss, please contact the SUDEP Action support team at the details below:
01 9061868