Does a Bespoke Intellectual Disability (ID) Epilepsy Service Reduce Mortality? A 11 Year Study of Sudden Unexpected Death in Epilepsy (SUDEP) in Cornwall UK

Abstract

Aim

Epilepsy is the second most common cause of premorbid mortality in the ID population. Rates of SUDEP are considered up to 9 times higher in the ID population. Cornwall UK (population 600.000 i.e. 1% of UK) runs a specialist ID epilepsy community service for adults with ID. It delivers reasonable adjustments and person centered care to this population. We measured how service outcomes on SUDEP compared to regional and national averages.

Methods

Data of all Cornwall epilepsy deaths 2004–2015 using the Cornwall Coroner's database and the Public Health Cornwall was reviewed systemically. We identified patients with and without ID.

Results

There were 113 epilepsy deaths of which 57 were SUDEPs of which 3 were identified to have a clinical diagnosis of ID. In another 2 cases it was not evident if they had an ID or not. None of the 5 was known to the ID Epilepsy service. Mean and 95% confidence intervals were calculated using a binomial calculation, making no prior assumptions about the population distribution.

Conclusion

Cornwall's specialist ID epilepsy service is a rarity in the UK. A recent study using the Leicestershire ID Register revealed 26 people with ID of the total deaths of 83 SUDEP. This contrasts greatly with Cornwall only 5.26% of SUDEP deaths had ID compared to 23.4% in Leicestershire and similarly when compared to neighboring Plymouth (population 300.000) which had 26% ID deaths in its SUDEPs between 2004–2012. It is possible that having an ID dedicated epilepsy service saves lives.

Disclosure of interest

The author has not supplied his/her declaration of competing interest.