Reducing Epilepsy Deaths

RED Initiative

Reducing Epilepsy Deaths

There are approximately 300 epilepsy-related deaths in Australia each year. (1)

Death in epilepsy can be caused by a range of factors, including status epilepticus, seizure-related injury and accidents, suicide and treatment-related deaths. A recent Department of Health & Human Services (DHHS) report into avoidable mortality in Victoria between 1997 and 2003 found that epilepsy was in the top five causes of death for ages 5 to 29.(1) The most frequent cause of epilepsy-related death is Sudden Unexpected Death in Epilepsy (SUDEP). (2)

The Epilepsy Foundation is undertaking a project to work to reduce avoidable and unexpected deaths in people with epilepsy using strategies aimed at prevention.

More specifically the aims of this project are:

  • To understand the incidence and prevalence (including deaths), risk factors and management of epilepsy. This will be undertaken through the analysis of existing datasets.
  • To improve the effectiveness of the death certification process through the development of professional practice guidelines.
  • To develop strategies for prevention (e.g. safety checklists, monitoring programs) for use by health professionals, community support organisations and people living with epilepsy.

Some of the outputs for this project so far:

Seizure Journal Article

Bellon, M, Panelli, R and Rillotta, F. Epilepsy-related deaths: An Australian survey of the experiences and needs of people bereaved by epilepsy. Seizure (2015), 29: 162-168

Epilepsy is not a benign condition, it can result in death. Most family members and friends who were surveyed did not know that people can die of epilepsy. In those who did know, there were some who said that death was not adequately explained to them.

There were several types of deaths identified including sudden unexpected death in epilepsy (SUDEP), epilepsy, drowning, cardiac arrest, asphyxiation and motor vehicle accidents.

The average age at death was 32 years. Most deaths occurred at home and with the person being alone at the time.

There is a significant need to improve the awareness, understanding, communication and support needed with family members and friends of people with epilepsy about its potentially fatal and serious consequence – death.

(1) Department of Human Services (DHS), 2008, Avoidable mortality in Victoria: trends between 1997 and 2003, Health Intelligence Unit, Office of the Chief Health Officer, Public Health Branch, DHS, Melbourne.
(2) Friedman, D and Hirsch, L. Sudden unexpected death in epilepsy – an overview of current understanding and future perspectives. European Neurological Review 2012; 7 (1): 67:71.

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