Critical new study confirms Irish incidence of sudden unexpected death in epilepsy

New Irish research has revealed the first-ever national data on the incidence of sudden unexpected death in epilepsy (SUDEP) in Ireland. 

The study, published in Seizure: European Journal of Epilepsy and led by Dr Yvonne Langan, Consultant in Clinical Neurophysiology in St James’s Hospital, Dublin, and senior lecturer in Trinity College Dublin, together with the Health Research Board, examined data from all deaths referred to coroners in Ireland in 2019, identifying those with a history of epilepsy.

The research identified 33 cases of definite SUDEP in 2019, representing an incidence rate of 1:1,400 per annum among people living with epilepsy. Of the 33 cases, 21 were men and 12 were women, with ages ranging from nine to 81 years, with a median age of 45 years. Most individuals were found dead at home.

The estimated incidence of SUDEP in the epilepsy population as a whole was 0.7/1,000 (0.46-0.94) person years. This may be a conservative estimate, though the findings are in keeping with the incidence rates identified in other population based studies which range from 0.09 to 2.4/1,000 person years.

SUDEP was mentioned on the death certificate in only 52 per cent of cases. Information on the full epilepsy and medical history of SUDEP victims was limited as access to comprehensive medical notes was not possible.

While the exact reasons for SUDEP occurring in some people with epilepsy is unknown, previous research has shown that having uncontrolled or untreated tonic-clonic seizures is the biggest risk factor. In 13 of 33 (39 per cent) cases in this study there was evidence of a recent seizure, commensurate with the findings of other researchers. The study noted that it is known from case control studies that generalised tonic-clonic seizures are a significant risk factor for SUDEP. In addition, there is evidence that nocturnal seizures increase the risk of SUDEP; and in this study the majority of cases were found dead in bed.

Speaking on the importance of identifying Irish-specific data, Dr Langan said the study will help shape the future treatment of epilepsy patients.

“Ireland-specific data is vital in shaping effective healthcare policies. The findings will help raise awareness of SUDEP within both the patient and medical community and I hope will support tailored interventions to reduce risk for patients in the future.”

Reducing SUDEP

Epilepsy Ireland believes that with targeted action to improve access to specialist care, the incidence of SUDEP can be decreased. Peter Murphy, CEO of Epilepsy Ireland, said not enough is known about SUDEP, even within the Irish epilepsy community.

“This study is a significant step forward in our understanding of the extent of SUDEP in Ireland,” he said.

“SUDEP is the most devastating consequence of epilepsy and over the years, we have met with far too many bereaved families who were not aware of SUDEP until their loved one passed away. 

“We know that at least some of these deaths can be prevented by ensuring that more people with epilepsy become seizure-free and remain that way. This can be achieved through faster access to diagnosis and treatment, improved dialogue between healthcare professionals and patients, and through enhanced efforts to improve education and self-management about known SUDEP risk factors which are modifiable.

“To date, much of the action around SUDEP in Ireland has come from Epilepsy Ireland, supported by the fundraising efforts of bereaved families. 

“The epilepsy community should not have to depend on the fundraising efforts of bereaved families to target this serious issue. This study tells us that a national, Government-led strategy with input from clinicians and patients is urgently required and it is vital that these calls will be taken seriously by Government, the HSE and Department of Health.”

Continuing research

While this study has established the incidence SUDEP in Ireland for the first time, ongoing research will focus on identifying the total number of epilepsy-related deaths, including causes such as status epilepticus (prolonged seizures) and seizure-related injuries. It is currently estimated that over 130 epilepsy-related deaths occur annually in Ireland (including those from SUDEP). This data is expected to be published in the coming months and according to Epilepsy Ireland, will further highlight the urgent need to develop a new strategy to reduce SUDEP and epilepsy-related deaths. 

The study’s findings were released to coincide with SUDEP Action Day 2024 – a day in which awareness is raised of SUDEP and epilepsy risks internationally, as well as remembering those who have passed away.