Epilepsy Bereaved is unique in dedicating our research funds exclusively to the prevention of sudden unexpected death in epilepsy (SUDEP) and other 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 Sudden Uuexpected Death in Epilepsy 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 National Sentinel Audit 2002, 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 Sudden Unexpected Death in Epilepsy 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;
Risk Factors for epilepsy-related mortality (Dr Martin Gulliford, Professor Mark Richardson, Professor Leone Ridsdale; Department of Primary Care and Public Health Sciences, King’s College London and Neuroscience Department, Institute of Psychiatry, King’s College London)
Epilepsy Bereaved recently supported a research study utilising the General Practice Research Database (GPRD) to evaluate trends in epilepsy mortality and risk factors for mortality 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 opened up a new opportunity to use the increased information available to help identify interventions aimed at preventing deaths. The Sudden Unexpected Death in Epilepsy (SUDEP) Research Initiative funded 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. This study showed that mortality in epilepsy may be increasing in the UK. There was evidence that patients who do not receive repeat prescriptions for anticonvulsant drugs, who have depression, recent injuries or alcohol problems may be at increased risk or mortality. However, patients who remain seizure free over 12 months are at lower risk.
Study of anticonvulsant drug utilisation in relation to epilepsy mortality (Dr Martin Gulliford, Professor Mark Richardson, Professor Leone Ridsdale; Department of Primary Care and Public Health Sciences, King’s College London and Neuroscience Department, Institute of Psychiatry, King’s College London)
The previous study using the General Practice Research Database (GPRD) to evaluate trends in epilepsy mortality and risk factors for mortality in epilepsy did not evaluate anticonvulsant drug utilisation by people with epilepsy. Our research initiative is now funding more in-depth analysis of anticonvulsant drug utilisation in epilepsy and to specifically compare anticonvulsant drug utilisation and prescription persistence between people with epilepsy who died and those who did not die between 1992 and 2007.
The proposed analyses will provide valuable in-depth information concerning the utilisation of anticonvulsant drugs by persons with epilepsy. The analyses will contribute to identifying groups who may not be able to access optimal anticonvulsant therapy or do not receive optimal quality of care for their epilepsy. The relevance of these issues for epilepsy mortality will be explored.
Audit on mortality and Sudden Unexpected Death in Epilepsy (SUDEP) rate in epilepsy patients undergoing Vagal Nerve Simulator: Professor Polkey and Dr L Nashef’;
472 UK based patients with refractory epilepsy who have had a Vagal Nerve Simulator inserted at a tertiary centre until the end of 2009 will be flagged up with analysis of mortality rates, including Sudden Unexpected Death in Epilepsy (SUDEP), now and in 5 years’ time.
Audit on mortality following epilepsy surgery : Professor Polkey and Dr L Nashef;
UK based patients undergoing epilepsy surgery at a tertiary centre until the end of 2009 to be flagged up with analysis of mortality rates, including Sudden Unexpected Death in Epilepsy (SUDEP), now and in 5 years’ time. General Practice Research Database (GPRD) to evaluate trends in epilepsy mortality and risk factors for mortality in epilepsy.
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 Sudden Unexpected Death in Epilepsy 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 our research initiative please contact Jane Hanna (Director – Epilepsy Bereaved) on 01235 772850 or jane.hanna@epilepsybereaved.org.uk
