Epilepsy Bereaved is unique in dedicating our research funds exclusively to the prevention of epilepsy-related deaths and our ability to enable the participation by bereaved families in this research.
The charity has led key advances in this area convening the first international research workshop on SUDEP in 1996 . The workshop included what is now generally accepted as the definition of SUDEP; recognised the neglect of SUDEP as an area of research; identified research priorities and the urgency of these being tackled. The workshop acted as a catalyst for major new research identifying the strong association between SUDEP and seizures. In 2002 Epilepsy Bereaved led the NICE Audit of Epilepsy-Related Deaths, unique internationally as the only government funded national investigation of epilepsy deaths and identifying significant potential for prevention. The developing evidence base on SUDEP was used in the development of national clinical guidelines in 2004 .
We aim to build on the progress and in 2008 established the SUDEP Research Initiative , a collaboration between Epilepsy Bereaved and a team of researchers at King’s College, University of London and King’s College Hospital NHS Foundation Trust. Our approach is a pragmatic one aimed at conducting research most likely to deliver practical applications to reduce deaths and support families.
Today through the SUDEP Research Initiative we have identified key priorities and have been able to fund a project into risk factors and pilot research involving bereaved families. A major part of our collaboration is working together to submit major funding bids needed to take forward much needed research into communication of risk; the impact of SUDEP; monitoring of epilepsy-related deaths and research into seizures during sleep.
Current Research Projects
Risk Factors for epilepsy-related mortality
We are funding research into the General Practice Research Database to look at factors associated with deaths in epilepsy. Up until recently there was no monitoring of epilepsy and indeed the NICE Audit of epilepsy-related deaths found that record keeping was often poor. Since 2004 GPs monitor patients with epilepsy yearly and achieve points for the Quality and Outcome Framework (QoF). This opens up a new opportunity to use the increased information available to help identify interventions aimed at preventing deaths. The research will use a retrospective case-control cohort study comparing characteristics of patients with death and epilepsy, and with other patients and will look at factors such as diagnosis; prescriptions; frequency of consultations and hospital admissions.
Research with bereaved families
Epilepsy Bereaved is recognised as the leader internationally in the development of support services for people bereaved through epilepsy. The charity is unique in the world in having contact with over 1000 families bereaved through epilepsy and being contacted by about 100 families per year, representing some 10% of all deaths in a year in the UK. Anecdotally it is known to the charity that this group includes a significant number of deaths in people with mild, recently diagnosed and untreated epilepsy with greatest potential for prevention. It is important these deaths are researched and presented in the medical literature as current evidence focuses on hospital based cohorts with difficult to control epilepsy. Some clinicians will only communicate risk to this difficult to treat group.
This research also aims to tackle the current gap in scientific research in understanding the impact of SUDEP on the family. This is essential not only to improving communication with the family both before and after a death, but in the development of community-based support services which may be preventative of the health and social problems known to be associated with sudden unexpected deaths. Epilepsy Bereaved has funded a pilot project to produce evidence of the need for and our ability to undertake research into the experience of people making contact with the charity. Research into the experience of bereaved families was advanced during the year by a pilot project which successfully recruited 72 participants and has provided us with importance evidence to support an external research bid.
Communication of Risk
Patient education and participation is integral to a strategy of prevention of deaths based on reduction of risk.
National clinical guidelines on epilepsy support communication of risk to people with epilepsy. There are, however, 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. Vital research is needed to understand the perspectives of patients, clinicians and families bereaved through epilepsy; improve understanding of risk and produce a practical communication tool that can be used in medical practice. During the year we supported the successful completion of the first stage of a major research bid and we will take forward this work with a final bid during 2009/2010.
Monitoring of epilepsy-related deaths
The findings of the NICE Audit of 2002 found 42% of deaths potentially avoidable, but there has been no follow-up monitoring. Through our new initiative we were able to convene a UK workshop of research experts to examine the case for a national register of deaths. The workshop supported the need for a national register, but there is little by way of external funding streams available for this type of research. We aim to take forward the case for a national register of deaths following our expert research workshop with appropriate agencies interested in progressing initiatives of this kind.
Intensive monitoring beds
Nearly all SUDEP deaths happen in bed. We need to better understand the mechanisms that may contribute towards SUDEP. We are supporting a bid for external funding to research seizures during sleep using intensive monitoring beds.
If you have any questions about the research, then please contact Jane Hanna (Director – Epilepsy Bereaved) on 01235 772850v or jane.hanna@epilepsybereaved.org.uk
