Systematic review of paediatric SUDEP and epilepsy-related deaths to inform a safety counselling checklist for clinical practice

Background

One in 200 children - in the UK have epilepsy. Approximately, 1 in 1,000 children with epilepsy die yearly from Sudden unexpected death in epilepsy (SUDEP), a leading cause of death in epilepsy. Various risk factors contributing to epilepsy mortality particularly SUDEP, some modifiable, have been identified. Structured discussion of risks results in behavioural change that reduces individual risk factors.

Aim

To investigate and collate risk factors for SUDEP and epilepsy mortality in children to propose a structured communication tool (“Checklist”) for person centred communication.

Methods

A Systematic review for children’s epilepsy mortality risk factors was conducted. The search strategy was developed by clinical and topic experts in conjunction with a clinical evidence specialist and an epilepsy charity. Database searches (MEDLINE, Embase, CINAHL, PsycINFO) were performed in 06/2022 and updated 02/2024, with results assessed independently by two reviewers. Terms covered paediatrics, epilepsy, epilepsy mortality and SUDEP. Results were synthesised into risk factor domain.

Results

Six papers encompassing three review articles (covering 33 original research articles), and three other original research articles were included. A further four articles specifically looking at different genetic epilepsies and SUDEP were also added. There was heterogeneity among papers. No RCTs, including papers in the review, were identified. Quality analysis of papers was not undertaken. Eleven key risk factors covering domains of seizure presentation, management, co-morbidity and genetics were identified.

Conclusions

A safety Checklist is proposed with identified risk factors for routine clinical–patient interaction to facilitate easier, structured, individualised and evidence-based communication.