Identifying and mitigating Sudden Unexpected Death in Epilepsy (SUDEP) risk factors

ABSTRACT

Introduction: Sudden Unexpected Death in Epilepsy (SUDEP) is a significant cause of death for people with chronic epilepsy. Good practice guidance in the UK and the USA expect SUDEP to be discussed with the individual. The event rarity, methodological variance and lack of robust research into the pathological mechanisms, associated risk factors, and management strategies have created a challenge on how and what to discuss. There are some significant associations which allows for risk assessment and mitigation.

Areas covered: The current understanding of static and modifiable risk factors for SUDEP and how to manage these more effectively are reviewed. Longitudinal risk may be assessed using standardised risk assessment tools which help in communicating risk. Technological advancement allows measurement of physiological parameters associated with seizures and risk of SUDEP using small wearable devices. Further evidence is needed to demonstrate such technologies are efficacious and safe.

Expert commentary: Risk reduction should be an important part of epilepsy management and we suggest a Gold Standard of Care which healthcare professionals and services should aim for when approaching SUDEP risk management. A Minimum Standard of Care is also proposed that is practical to implement, that all people with epilepsy should expect to receive.

KEYWORDS:

• Mechanism
• risk factors
• avoidable death
• preventable death

Declaration of interest

R Shankar is a stakeholder of the ‘SUDEP and Seizure Safety Checklist’, is a principal developer & key stakeholder of EpSMon, has received institutional and research support and personal fees from LivaNova, UCB Pharma, Eisai, Special Products (now Veriton Pharma), Bial and Desitin Pharma outside the submitted work. JW Sander is a member of the SUDEP and Seizure Safety Checklist review panel, has received departmental research support from Eisai and UCB Pharma and has been consulted by and received fees for lectures from Bial, Eisai, Janssen and UCB Pharma outside the submitted work. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.

Additional information

Funding

This paper was not funded.