Mortality and sudden unexpected death in epilepsy in a cohort of 888 persons living with epilepsy in Rwanda

Aim Mortality among people living with epilepsy (PwE) is two- to three-fold higher than in the general population with a median standardized mortality ratio in Sub-Saharan Africa of 5.4 and Sudden Unexpected Death in EPilepsy (SUDEP) as the most common cause of epilepsy-related death. We prospectively estimated mortality and SUDEP rates in a cohort of PwE in Rwanda. Methods We conducted a longitudinal study at the tertiary CARAES Neuropsychiatric hospital (Kigali) and at three primary healthcare centres in the Musanze District, Northern Province. PwE, aged ≥15 years, were enrolled between February and December 2018. PwE not attending a close-out visit after 12 months were contacted. Upon report of a death, a neurologist travelled to meet family members and administered the WHO Verbal Autopsy Questionnaire to assess cause of death. Results Out of a total of 888 PwE ten deaths were identified, yielding a mortality rate of 11.4/1000 person-years. Seven deaths had an identified cause, four of which were directly related to epilepsy, including death following head trauma, brain hematoma, prolonged seizure and status epilepticus. No cause of death was identified in three cases and these were interpreted as probable SUDEP, yielding a SUDEP rate of 3.4/1000 person-years. Mortality rates in tertiary and primary centres were comparable. Conclusions Mortality rates are high and in line with previous reports from Rwanda. Improved treatment access and education of patients and families on death risks, including risk factors for SUDEP, should be provided so to improve treatment compliance and better seizure control.