Mortality of all causes and sudden unexplained death in epilepsy (SUDEP) in a cohort of 235 persons living with epilepsy in Rwanda using WHO Verbal Autopsy Questionnaire

Abstract

Introduction Mortality in persons living with epilepsy (PwE) is 1.6–9.3-fold higher than in the general population. Mortality from definite/probable Sudden Unexpected Death in EPilepsy (SUDEP) is estimated at 1.2 per 1000 person-years. We report mortality and SUDEP rate in a cohort of Rwandan PwE. Methods PwE presenting for a first visit at the Ndera epilepsy center between January and June 2016 were followed-up prospectively. For PwE who did not attend their follow-up visit, home visits were organized. Deaths were assessed using World Health Organization Verbal Autopsy Standards age-specific questionnaires. Results Of 235 PwE enrolled, home visits were organized for 81 (34.4%) PwE who did not return for their follow-up consultation. Seven fatalities (mortality 16.7/1000 patient-years [CI 6.7–34.3]) were recorded (aged 2–80 years). Four had an identified cause. Three were classified as probable SUDEP, resulting in a probable SUDEP rate of 7.1/1000 patient-years (CI 1.47–20.86). Probable SUDEP occurred in PwE (age: 2, 21, 34 years) showing no symptoms of illness while receiving antiepileptic treatment; in two cases, death occurred during sleep. Conclusion Although autopsies were absent, the high mortality and probable SUDEP rates warrant future studies to establish causes of epilepsy-related deaths in Rwanda and sub-Saharan Africa.

The analysis of SUDEP forensic autopsies leading to preventable events

“…In this way, by monitoring all patients defined as "at risk, " we could highlight the pathophysiological mechanisms of SUDEP that today are unclear. The interaction between the various systems of the human body in the determination of sudden cardiac death in epileptic patients could be investigated by encouraging machine learning (67,68). The second use of deep learning is closely related to the first: through machine learning resulting from research, extrapolated data can be applied for prevention purposes.…”

Letter to the Editor in response to Professor Josef Finsterer

“…The authors thank Prof Josef Finsterer for his concerns and comments expressed in his letter to the editor on the article of mortality and sudden unexpected death in epilepsy (SUDEP) [1] . The authors considered all deaths identified in a cohort of 235 persons living with epilepsy (PWE) and administered the World Health Organization verbal autopsy age-specific questionnaire (WHO-VAQ) [2] .…”

SUDEP cases require thorough post-mortem work-up to eventually detect an underlying cause

“…We read with interest the work of Sebera et al, about a study of mortality from sudden unexpected death in epilepsy (SUDEP) in 235 epilepsy patients from Rwanda [1] . Probable SUDEP was diagnosed in 3/235 patients of whom none underwent autopsy.…”