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Sudden unexpected death in epilepsy in children: a focused review of incidence and risk factors
  1. Anurag Saxena1,
  2. Lliwen Jones2,
  3. Rohit Shankar3,
  4. Brendan McLean4,
  5. Craig G J Newman5,
  6. Khalid Hamandi6
  1. 1The Noah’s Ark Children’s Hospital for Wales, Cardiff, UK
  2. 2Ysbyty Gwynedd Hospital, Bangor, UK
  3. 3Exeter Medical School, Exeter, UK
  4. 4The Royal Cornwall Hospitals NHS Trust, Truro, UK
  5. 5Plymouth University Peninsula Schools of Medicine and Dentistry, Plymouth, UK
  6. 6Wales Epilepsy Unit, Department of Neurology, University Hospital of Wales, Cardiff, UK
  1. Correspondence to Dr. Khalid Hamandi, Wales Epilepsy Unit, University Hospital of Wales, Cardiff, CF144XW, UK; hamandik{at}


Sudden unexpected death in epilepsy (SUDEP) in children, although rare, needs critical attention given the tragic nature and devastating consequences for families and caregivers. True incidence is unknown and risk factors are not completely understood, more so in children compared with adults. A focused narrative review of available studies on paediatric SUDEP was undertaken to comprehend its risk factors and to develop strategies to recognise and where possible modify SUDEP risk and ultimately reduce incidence. We reviewed 16 population-based studies from various settings. We found overlapping risk factors from different studies. The prime risk factor is uncontrolled seizures. This review supports the view that children entering adolescence with optimal seizure control could be a key aspect in reducing adult mortality related to SUDEP. Ideally, clinicians would want to be able to predict prospective, individualised SUDEP risk, which is challenging due to a myriad of risk factors and an inherent non-homogeneous paediatric epilepsy population. Nevertheless, an adequate evidence base exists as evidenced by this review to support information giving and communication to support young people with epilepsy and their families in being active partners in recognising and reducing their SUDEP risk. More work particularly in the form of prospective studies and registries are needed to further clarify true incidence which may have been previously underestimated and to update risk factors.

  • epilepsy
  • non-clinician
  • paediatric neurology
  • post mortem
  • sudden death

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  • Contributors RS, KH, BM conceived the paper. KH and LJ developed and conducted the literature search. KH, LJ and AS screened and selected the papers. AS and KH drafted the paper. All authors reviewed and contributed to the manuscript and approved the final version.

  • Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests RS is a major stakeholder of the ‘SUDEP and Seizure Safety Checklist’. RS, BM and CGJN are developers and key stakeholders of EpSMon. RS has received institutional and research support and personal fees from LivaNova, UCB, Eisai, Special Products, Bial and Desitin outside the submitted work. BM has received research support and personal fees from Eisai, UCB and Desitin outside the submitted work. KH has received institutional and personal, consultancy and speaker fees from Eisai, UCB and Bial, outside this submitted work.

  • Patient consent Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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