RED Initiative

SUDEP

Epilepsy & SUDEP

Sadly there are around 300 deaths from epilepsy in Australia each year.

5% of people die from a seizure that just won’t stop despite medical intervention this is called Status Epilepticus.
45% of people die as a result of an accident caused by a seizure. Epilepsy is ranked in the top 5 causes of avoidable mortality from ages 5 -29.

This could include:

  • Drowning whilst swimming, bathing or showering
  • Having a seizure whilst in a dangerous situation such as up a ladder or near operating machinery
  • Driving a vehicle

These deaths can be reduced by understanding and managing the risks of peoples epilepsy.

The other 50% of deaths from epilepsy are the result of SUDEP.

At the Epilepsy Foundation we work to communicate awareness of sudden unexpected death in epilepsy in a practical and non-alarmist way. If you have suffered a bereavement due to SUDEP, the Epilepsy Foundation has experienced Support Workers who can help at this time.

For assistance and information, please call 1300 761 487 or email epilepsy@epilepsyfoundation.org.au

 

What is SUDEP?

SUDEP is sudden unexpected death in someone with epilepsy, who was otherwise well, and in whom no other cause of death can be found, despite thorough post mortem examination and blood tests. This does not include those who die in status epilepticus and those who die from a seizure-related accident.

In general, the risk of SUDEP for an adult with epilepsy is low, at one in 3000 persons over a one-year period. For persons with poorly controlled seizures the risk is one in 100 persons over one year. In children, SUDEP is an even rarer occurrence with the risk as low as one to two in 10, 000 over one year.

To date we do not know what causes SUDEP. Current research leads to respiratory or cardiac dysfunction, but the cause of this dysfunction still eludes us and we cannot know who will be affected.

However, over the years some possible risk factors have been suggested including:

  • Young adulthood
  • Early age of onset of seizures
  • Presence of tonic clonic seizures
  • Increased frequency of seizures
  • Frequent changes of dose and type of antiepileptic medication (AED)
  • Poor compliance with AEDs
  • Certain epilepsy syndromes

Yet risk factors only tell part of the story. Sometimes individuals with infrequent seizures die, while others with more frequent and apparently more severe seizures do not. Some may be more at risk because of social factors, lifestyle or sub-optimal management; others may have additional biological susceptibility.

Reducing Risk

People with epilepsy can take a very positive approach to reducing risk by making seizure freedom a high priority. Good control of seizures is often achieved quite simply by taking the medication prescribed, at the correct dose on a regular basis.

It is generally agreed that seizure frequency is the factor most strongly associated with an increased risk of SUDEP, and that the unknown category of seizure frequency, that where seizure frequency is not known or disclosed, showed the strongest association with risk of SUDEP of all seizure-frequency groups.

Life is precious, and while the risk of SUDEP is low, all factors that may lead to injury or loss of life should be included in any risk management discussion. Informed decisions about treatment and lifestyle can only be made if all the information is provided and consequences discussed.

Communicating Risk

In the UK in 2004, the National Institute for Clinical Excellence issued guidelines stating that healthcare professionals should provide a person with epilepsy and their family or carers with general information about SUDEP, to show why controlling seizures is important. They should also discuss with the person with epilepsy (and their family or carers, as appropriate) their individual risk of SUDEP.1

A collaboration between Epilepsy Australia and SUDEP Action [Epilepsy Bereaved (UK)] has been running for many years, providing information to members, the epilepsy community and bereaved families. Epilepsy Australia has been proactive in communicating the known facts and possible risks of SUDEP since 1998 and in 2005, with partner SUDEP Action, published the highly regarded book Sudden Unexpected Death in Epilepsy: a global conversation. This book brought the SUDEP conversation into the public domain. In 2011 the partnership was broadened to include SUDEP Aware (Canada) and a second edition was published reflecting the increase in SUDEP research since 2005.

By 2014, with the growth in research continuing, SUDEP: continuing the global conversation, edition 3, is now available online at www.sudepglobalconversation.com

Despite the NICE guidelines there are still widely divergent views on what defines best practice in communication of risk with people with epilepsy and their families. Ethical, legal and practical arguments have all become points of debate. But perhaps some of these views are now out of step with community expectations of full disclosure of health risks of epilepsy by the treating doctor.

1. National Institute for Clinical Excellence. Diagnosis and care of children and adults with epilepsy. London, 2004.

Informing our Community

The Epilepsy Foundation works actively to raise awareness of SUDEP in a practical and non-alarmist way.

SUDEP was the keynote address at the inaugural 2008 meeting of the Parliamentary Friends of Epilepsy where the statistic of 300 epilepsy-related deaths per year, half of these SUDEP, both surprised and shocked them. All agreed more needed to be done. The Friends then announced that they would hold an informal Inquiry into the Impact of Epilepsy in Australia Today to better inform themselves how epilepsy impacts on Australian families.

This Inquiry was held in Canberra in October 2009, and in the Joint Epilepsy Council of Australia’s (JECA) submission the issue of epilepsy-related death, and especially SUDEP, was addressed:

” There are approximately 300 epilepsy-related deaths in Australian each year. Death in epilepsy can be caused by a range of factors, including status epilepticus, seizure-related injury and accidents, suicide and treatment-related deaths. The most frequent cause of epilepsy-related death is Sudden Unexpected Death in Epilepsy (SUDEP). The term SUDEP applies to sudden death occurring in a person with epilepsy for no apparent reason. A high proportion of the people who die are young adults. Often they are found dead in bed and it is family and friends who make this shocking discovery. Historically such deaths were often attributed to some form of asphyxiation but it is now known that this is not the case. When such a death occurs and all other possible causes of death are excluded, SUDEP is usually attributed as the cause of death. The increased attention to SUDEP has largely resulted from the persistent work of bereaved families in the UK distressed by the loss of loved ones and puzzled by the lack of knowledge about this phenomena. In conjunction with some supportive clinicians these families persuaded the UK government to establish an audit into epilepsy-related death, which was published in 2002. The report identified almost 1000 epilepsy related deaths of which approximately half were SUDEP. The report suggested that many of the deaths may have been preventable, highlighting inappropriate care as a contributing factor. The audit appears to have energised the public discussion about epilepsy, generating debate as to why epilepsy care is inadequate and how best to rectify this situation. Subsequent research has begun to identify risk factors but the cause is still elusive.” 1.

1. A Fair Go for People Living with Epilepsy. Joint Epilepsy Council of Australia. p.23 2009

Call for Further Research

Research into SUDEP has grown internationally, with many papers published over the last few years examining possible mechanisms that may be identified as the underlying cause/s of this phenomena. Pockets of research are being conducted in Australia at The University of Melbourne and at Sydney University and the Centenary Institute contributing to this body of knowledge. However much more could be done if research funds were available.

Donate now to support further research into SUDEP.