The Incidence of Sudden Unexpected Death in Epilepsy (SUDEP) in Ireland
Abstract number :
2.396
Submission category :
16. Epidemiology
Year :
2023
Submission ID :
634
Source :
www.aesnet.org
Presentation date :
12/3/2023 12:00:00 AM
Published date :
Authors :
Presenting Author: yvonne Langan, MD MRCPI – st james's hospital, dublin
Ena Lynn, PhD – health research board, ireland
Rationale: This study aims to determine the incidence of sudden unexpected death in epilepsy (SUDEP) in Ireland in 2019.
Methods: The role of the coroner in Ireland is to enquire into the circumstances of sudden and unexplained deaths. This may require a postmortem examination, sometimes followed by an inquest. The Irish coronial system is such that we could reasonably expect the majority of SUDEP cases to be referred to the coroner.
The Health Research Board (HRB) in Ireland has an established mechanism in place for accessing data held by the coroners in the Republic of Ireland. Research nurses from the HRB examined all coronial files for 2019 and identified those with a possible diagnosis of epilepsy. Information on the subjects' cause of death, epilepsy and medical history were extracted from the post-mortem record and any other available records.
The data was further analysed to identify cases which could be confidently labelled as SUDEP. An up to date incidence rate for SUDEP in the Republic of Ireland was determined based on an epilepsy prevalence of 1%.
Results: Thirty-one cases were felt to be consistent with definite SUDEP, 19 males and 12 females with an age range of 9 to 81 years and a median age of 44 years. All deaths occurred in the home, the majority within the bedroom. A single death was witnessed. SUDEP was listed as the cause of death on the death certificate in 18 of these cases. Based on this data the SUDEP incidence in the Republic of Ireland in 2019 is 1:1580 across all age groups.
Conclusions: Individuals with epilepsy have a mortality rate two to three times that of the general population with SUDEP being the commonest category of epilepsy related death. This is the only study of SUDEP incidence in the Republic of Ireland and the rate calculated is in keeping with the literature. A previous study of a limited geographical area and assuming an epilepsy prevalence of 0.5% found an incidence rate of 1:680/annum. This study illustrates the usefulness of coronial data and the expertise of the HRB in gathering information on epilepsy related deaths in the Republic of Ireland.
Funding: Funding support for this study was received from Epilepsy Ireland, the Irish Institute of Clinical Neuroscience and Jazz Pharmaceuticals.
Epidemiology