ORCID

Abstract

BackgroundOne 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.AimTo investigate and collate risk factors for SUDEP and epilepsy mortality in children to propose a structured communication tool (“Checklist”) for person centred communication.MethodsA 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.ResultsSix 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.ConclusionsA safety Checklist is proposed with identified risk factors for routine clinical–patient interaction to facilitate easier, structured, individualised and evidence-based communication.

Publication Date

2025-01-01

Publication Title

Seizure: European Journal of Epilepsy

Volume

131

ISSN

1059-1311

Acceptance Date

2025-06-15

Deposit Date

2025-06-17

Funding

RS has received institutional research, travel support and/or honorarium for talks and expert advisory boards from LivaNova, UCB, Eisai, Veriton Pharma, Bial, Angelini, UnEEG and Jazz/GW pharma outside the submitted work. He holds or has held competitive grants from various national grant bodies including Innovate, Economic and Social Research Council (ESRC), Engineering and Physical Sciences Research Council (ESPRC), National Institute of Health Research (NIHR), NHS Small Business Research Initiative (SBRI) and other funding bodies including charities all outside this work. No other author has any declared conflict of interest.

Keywords

Epilepsy co-morbidity, Epilepsy harm, Epilepsy premature mortality, Multimorbidity, SUDEP communication, Seizure safety

Creative Commons License

Creative Commons Attribution 4.0 International License
This work is licensed under a Creative Commons Attribution 4.0 International License.

First Page

172

Last Page

179

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