The Epilepsy Deaths Register: Third-Party Reports of Sudden Unexpected Death in Epilepsy in Adults and Older Adolescents - European Medical Journal

The Epilepsy Deaths Register: Third-Party Reports of Sudden Unexpected Death in Epilepsy in Adults and Older Adolescents

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Neurology
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Authors:
* Alexander Grundmann , 1,2 Jacob Brolly , 1 Donald P Craig , 1 Karen Osland , 3 Jane Hanna , 3 Elaine Hughes , 4 Mike P. Kerr , 5 Ben Donovan , 3 Rhys H. Thomas 1,2
  • 1. Royal Victoria Infirmary, Newcastle-upon-Tyne, UK
  • 2. Translational and Clinical Research Institute, Newcastle University, Newcastle-upon-Tyne, UK
  • 3. SUDEP Action, Wantage, UK
  • 4. Evelina London Children's Hospital, UK
  • 5. Psychological Medicine and Clinical Neurosciences, Cardiff University, UK
*Correspondence to [email protected]
Disclosure:

Grundmann has received the European Academy of Neurology (EAN) Bursary as support for attending meetings/travel for the EAN Congress 2025. Brolly has received payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing, or educational events from UCB Pharma. Craig has received payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing, or educational events from Seer Medical. Osland was the Project Lead for the Epilepsy Deaths Register for the UK charity SUDEP Action until April 2020. Hanna was the Chief Executive for the UK charity SUDEP Action. Hughes has participated in multicentre commercial trials of fenfluramine for the treatment of epilepsy in Dravet syndrome; and is a member of the GW Pharmaceuticals-supported LGS Advisory Board. Kerr is Vice Chair of SUDEP Action, the charity that supports the Epilepsy Deaths Register. Donovan is the Project Lead for the Epilepsy Deaths Register for the UK charity SUDEP Action. Thomas has received grants or contracts from Angelini and UCB Pharma; payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing, or educational events from Angelini, Bial, Eisai, GW Pharma, Paladin, Neuraxpharm, Sanofi, Takeda, UCB Pharma, UNEEG, and Zogenix; and is the President of the ILAE British Branch.

Acknowledgements:

The authors would like to thank all reporters for their contributions to the Epilepsy Deaths Register.

Citation:
EMJ Neurol. ;13[1]:38-39. https://doi.org/10.33590/emjneurol/CEBK6644.
Keywords:
Epidemiology, epilepsy, sudden unexpected death in epilepsy (SUDEP).

Each article is made available under the terms of the Creative Commons Attribution-Non Commercial 4.0 License.

BACKGROUND

Sudden unexpected death in epilepsy (SUDEP) is the most significant complication of epilepsy, with an incidence of 1.2 per 1,000 patient-years.1 The major source for SUDEP case series has been medical case record review;2,3 however, most deaths occur at home, with family and friends as witnesses to the event or to the scene of death. The authors, therefore, aimed to describe SUDEP characteristics using reports of deaths from third parties and to explore this reporting as a sampling technique.4

MATERIALS AND METHODS

The authors collected characteristics of the deceased and narratives surrounding death via the SUDEP Action UK Epilepsy Deaths Register (EDR), a dual-purpose record for research and support to bereaved families. They included adults and older adolescents if they had a certified cause of death and a narrative consistent with definite or probable SUDEP. The authors extracted demographics, details of follow-up, events leading to death, and attitudes towards the condition and treatment during life from third-party reporters between 2013–2024.

RESULTS

The study identified 407 SUDEP cases. Ages ranged from 15–85 years, with the majority (76% of cases) occurring between the ages of 19–49 years; 59% were male. Most cases found were in the prone position (63%), and death most frequently occurred during sleep (69%). SUDEP was not recorded as the cause of death in 24.8% of cases, despite a consistent reporter account. An increased frequency of SUDEP was observed with longer epilepsy duration, with 41% diagnosed more than 10 years prior to death.

Anti-epileptic medication was prescribed in 91% of cases, with 24% reported as sometimes forgetting to take their medications. Sixteen percent of cases lived alone, and 16% of deaths were witnessed.

There was no significant association between seasonality or deprivation and cases of SUDEP, though increased deprivation was associated with home as the place of death (11.6% more) and with medication concerns (13.2% more). Fifty-one percent of reporters did not know that someone could die of epilepsy, and the impact of this can be seen in Table 1.

Table 1: Quotations from reporters regarding their feelings towards the communication of sudden unexpected death in epilepsy risk, both prior to and after the deceased’s death.
SUDEP: sudden unexpected death in epilepsy.

CONCLUSION

Third-party death reports are an effective, underutilised tool to sample SUDEP deaths, which may currently be missed by conventional mortality records. Consistent with previous population studies, SUDEP in the EDR was seen more frequently in young adults, those with longstanding epilepsy, during sleep, and most often found in a prone position.

Most of the SUDEP cases in the EDR had no medication concerns, did not live alone, and were under specialist follow-up, factors that are recognised as lowering risk. This heterogeneity across the spectrum of SUDEP deaths should prompt clinicians to openly discuss SUDEP risk with all people with epilepsy.

References
Sveinson O et al. Clinical risk factors in SUDEP: a nationwide population-based case-control study. Neurology. 2020;94(4):e419-29. Tomson T et al. Influence of risk factor combinations on incidence rates of SUDEP. Neurology. 2025;104(5):e213372. Opeskin K, Berkovic SF. Risk factors for sudden unexpected death in epilepsy: a controlled prospective study based on coroners cases. Seizure. 2003;12(7):456-64. Grundmann et al. The Epilepsy Deaths Register: friend, family and care-giver reports of SUDEP in adults and older adolescents. Abstract OPR-068. EAN Congress, 21-24 June, 2025.

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