SUDEP Action

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Cochrane review investigates the effectiveness of interventions for the prevention of SUDEP

A new Cochrane review into the interventions for the prevention of SUDEP has been released to help researchers make informed decisions about this complex and ever changing subject. The review looks at evidence from research trials and studies into SUDEP to investigate the effectiveness of interventions designed to prevent SUDEP in people with epilepsy.

Cochrane are a renowned global network who look at available evidence to help health professionals, researchers & the public make informed decisions and the best choices about various health topics. They carry out detailed literature reviews, looking at published research to investigate and critically evaluate them. They base their findings on the results of studies that meet specific quality criteria, as they believe the most reliable studies provide the best evidence for making decisions about health care.

The review found that there was little strong evidence into preventative measures for SUDEP, with the number of SUDEP deaths recorded in studies often being too small to effectively prove successful or potentially successful interventions. It highlights that various devices and interventions are available to people with epilepsy that are thought to reduce the risk of SUDEP. However, at the moment there is no robust evidence available to confirm they have a preventative effect. The review states that it is important to investigate this area of research due to the devastating effect of SUDEP on families, and urges further research into these interventions in order to build strong evidence bases which prove prevention of SUDEP.

The review also recommends EpSMon, stating that:

In the digital world, a novel app (EpSMon) has recently been developed to monitor seizures, medication, and overall well-being to provide a more personalised approach to managing risk of SUDEP, which could fluctuate over the course of time. This would provide ample opportunity to collect prospective annual data nationwide linking clinical factors, interventions, and anti-epileptic drugs to overall SUDEP risk so that better-quality and more uniform information can be gathered about how to prevent SUDEP.

The authors summarise:

  • There is a potential preventative effect of night-time supervision for people with epilepsy who have uncontrolled nocturnal seizures due to the ability to quickly administer first-aid post seizure.
  • Current monitoring devices available have varying sensitivities in their ability to detect seizures, and therefore to prompt early intervention. Some companies may have misleadingly marketed devices on the basis of SUDEP prevention, however a preventative effect has not been evidenced in the review research.
  • There is also a lack of reported evidence of a preventative effect for other interventions claiming to reduce the risk of SUDEP via preventing airway obstruction, cardiorespiratory arrest, or both.
  • There is potential for further investigation into risk factors & the potential prevention of SUDEP using data gathered via EpSMon as a nationwide tool, supporting both people with epilepsy to manage risks now and researchers to continue investigating SUDEP in search of a proven intervention.   

Jane Hanna, SUDEP Action CEO commented:

“This evidence review is most welcome, giving a clear message that there is no proven intervention for SUDEP at this time. Families welcome the authors flagging up the devastation of SUDEP, the value of education on risk and of EpSMon the world’s first award winning self-monitor App for people with epilepsy. 

There is much that people can do to reduce risk for those with epilepsy & while there are no proven interventions yet, this does not mean there is no hope, or that there is no need to try to reduce risks now. Reducing risks for cot death saw deaths fall by half in the 1990’s, even though there is still no proven intervention. SUDEP Action follow similar principles to reduce epilepsy deaths, and our recent Health Service Journal Patient Safety and British Medical Journal Awards further back this approach. By working together to support people with epilepsy now while also investigating SUDEP further, we can help keep people safer each day until an intervention is proven to prevent deaths.”

This review highlights the real difficulty in this area due to the number of unwitnessed deaths and the need for large data sets in order to prove a successful intervention. It does however highlight the significant body of work into risk factors and how the improvement of education and information about risk awareness is helpful in the absence of a proven intervention; something we stand by and provide as a charity.

Read the full Cochrane Review here.

Find out more about Epilepsy Safety Devices here