Incidence of sudden unexpected death in epilepsy in New Zealand: A prospective population-wide, 2-year study

Peter S Bergin; Sunayana Sasikumar; Erica Beilharz; Charley Glenn; Robert Scragg

doi:10.1111/epi.18452

Incidence of sudden unexpected death in epilepsy in New Zealand: A prospective population-wide, 2-year study

Epilepsia. 2025 May 12. doi: 10.1111/epi.18452. Online ahead of print.

Authors

Peter S Bergin^{1

2}, Sunayana Sasikumar¹, Erica Beilharz¹, Charley Glenn³, Robert Scragg⁴

Affiliations

¹ Health New Zealand Te Toka Tumai Auckland, Auckland, New Zealand.
² Centre for Brain Research, Medical School, University of Auckland, Auckland, New Zealand.
³ Communio Mortality Management, Auckland, New Zealand.
⁴ Faculty of Medical and Health Sciences, University of Auckland, Auckland, New Zealand.

PMID: 40353687
DOI: 10.1111/epi.18452

Abstract

Objective: This study was undertaken to determine the incidence of sudden unexpected death in epilepsy (SUDEP) in New Zealand.

Methods: We attempted to prospectively identify all people with epilepsy (PWE) in New Zealand who died from SUDEP after August 1, 2019. Information about the patients' death and epilepsy was recorded in the EpiNet database. Two neurologists (P.S.B. and S.S.) reviewed each case and determined the SUDEP category. The national censuses for 2018 and 2023 were used as the denominator population.

Results: Records for 440 PWE who died between August 1, 2019 and July 31, 2021 were reviewed. We concluded that 103 people died from definite, definite plus, probable, probable plus, or resuscitated SUDEP (hereafter referred to as SUDEP). Possible SUDEP was diagnosed in 54. The crude incidence of SUDEP was 10.7 (95% confidence interval [CI] = 8.7-12.9)/1 million person-years. If the prevalence of active epilepsy in New Zealand was 5.49/1000 people, then the incidence of SUDEP in PWE was 1.93 (95% CI = 1.46-2.55) per 1000 person-years. If possible cases are included, the crude incidence of SUDEP was 16.2 (95% CI = 13.8-18.9) per 1 million person-years, and in PWE was 2.94 (95% CI = 2.23-3.89) per 1000 person-years. Sixty-five patients were male, and 38 were female (incidence rate ratio [IRR] = 1.75, 95% CI = 1.18-2.63, p = .005). The rate of SUDEP was lower among Asian people living in New Zealand compared with New Zealand European people (IRR = .33, 95% CI = .10-.83, p = .015). There was a trend toward a higher incidence in Māori and Pacific peoples. Employment status was known for 62 people, of whom 23 were unemployed.

Significance: The incidence of SUDEP in New Zealand in PWE (1.93/1000 person-years) is higher than usually reported for high-income countries, although there is uncertainty regarding the prevalence of epilepsy in New Zealand. We suspect the actual incidence of SUDEP worldwide is higher than is usually reported.

Keywords: EpiNet; epidemiology; mortality.

Abstract

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