Epilepsy Deaths Register – reporting on the first year
W Henry Smithson, Professor of General Practice, University College Cork, National University of Ireland
Jane Hanna, CEO, SUDEP Action
Karen Osland Dep. CEO, SUDEP Action
The Epilepsy Deaths Register (EDR) was set up in March 2013. The register is owned and managed by SUDEP Action in collaboration with research teams (https://www.epilepsydeathsregister.org/en/expert-team). The Project Management Committee includes senior researchers from King’s College, London; University College, London; University College, Cork; Exeter Medical School; University of Cardiff and the University of Glasgow.
To help prevent deaths, researchers need to find out what happened in as many cases as possible. The EDR helps this by:
- Providing a secure and supportive environment for participation in research.
- Collecting vital information on the circumstances of the death.
- Supporting families wishing to donate tissues for epilepsy and SUDEP research.
- Improving awareness amongst professionals and the public.
The data provided by the EDR is a valuable supplement to the registers of people monitored in epilepsy monitoring units and gives a wider range of risk groups. We know that a significant number of people who die are not in regular contact with specialists. The EDR helps give researchers a clearer picture of epilepsy-related deaths.
We now have over 300 registrations which is a great start and reflects the motivation of families and the dedicated team at SUDEP Action who promoted the register online and through liaising with professionals and patient organisations. A similar register set up by experts and bereaved families in France in 2010 relies on a network of neurologists in regions and has attracted 160 reports so far.
The EDR offers a dedicated reporting service via telephone, online registration and by post. The Epilepsy Deaths Register team based at SUDEP Action helps people with any difficulties they may experience when making a registration and provides a caller-led support service.
SUDEP Action has a professional infrastructure with experienced counsellors trained in supporting bereaved families in research. It is vital that families who may be traumatised are supported by professionals who understand the complexity of the experience of families in the aftermath of an epilepsy-related death.
“It’s the first time we have written down facts and feelings concerning our daughter’s death… We printed the form first so we could spend some time thinking about what we wanted to say, then we made a pot of tea, took a deep breath and wrote everything down. In the end it was a cathartic experience and we were glad to do it.”
There is no restriction on reporting so long as the reporter is over 18. A reporter may choose to only participate in the first part of registration which takes about 10 minute to complete.
The question frame for families was developed through literature review & panel meetings with families and professionals. These were used to develop the question frame that was then tested by bereaved families, by Professor Smithson and the register research assistant Brigitte Colwell (Sheffield). The team has ethical approval for the EDR - family study.
Outcomes from the first year of the register include:
- Families keen to use this secure platform for the reporting of epilepsy deaths and to help `others benefit from our experience’.
- In the first year (March 2013-February 2014) 275 cases were registered. The number of deaths recorded as SUDEP (102/214) suggests that the knowledge of SUDEP has increased amongst pathologists and coroners.
- The majority of people have chosen to use the online facility for reporting suggesting a value reporting from the comfort and the privacy of their own home.
- The overwhelming majority of reporters do choose to participate in detailed questions, but they are able to choose the time when they want to participate and can revisit their registration over 7 days.
- The information has been high quality and detailed.
- Emerging themes show that the use of SUDEP on death certificates has increased suggesting improved awareness; but families reporting gaps in knowledge of SUDEP persist.
- A collaboration agreed between The Epilepsy Deaths Register and the Epilepsy Society Brain and Tissue Bank, a joint initiative of University College, London and the Epilepsy Society. SUDEP Action is informing all people who register that there may be an opportunity to donate tissues to research and is also encouraging coroners to raise awareness of The Epilepsy Deaths Register and the Epilepsy Society Brain and Tissue Bank with bereaved families.
Emergent themes from free text comments include gaps in knowledge and support.
“...feel that if we had been told about SUDEP and how we could have helped reduce the risk or even prevent it, then R could still be here”.
“We were invited to speak to T’s GP, who was sympathetic but seemed unaware that people could die from epilepsy”.
“After T’s death I learned that the consultant was aware of SUDEP but believed patients should not be told of the risks”.
“I will never come to terms with losing my son who was a strapping healthy young man who had no problems other than suffering from seizures which were kept reasonably under control...It has been 13 years since R passed away and time does not heal...”
The Priority so far has been to focus on family reporting which through collaboration with other initiatives will contribute to a better understanding of epilepsy-related mortality. Family reporting can provide information not readily available in health or coronial records. Families are usually vital to access data from coroners and third party sources and family consent is vital to donation of tissue after death.
Looking ahead we need to maximise registrations and develop coronial reporting. We are very pleased to report that we have recently appointed Sammie Ashby, Policy and Development Officer, based in England and Chris Jeans, Development Officer for Scotland. They have now started liaising with coroners and procurator fiscals.
At least 28 Coroners have already agreed to support the register in principle and it is hoped that a memorandum of understanding can be developed to maximise reporting. We will be meeting with the Chief Coroner for England on 5 January, 2015 to take this forward.
Academic and not- for- profit organisations in the UK and around the world have begun to promote the EDR.
Please support the EDR and ask organisations you are in contact with to promote it. There are publicity materials available and we are happy to write for any magazines.
A longer article including the international EDR will be published on 5 December, 2014 as part of SUDEP-Continuing the Global Conversation (Eds. Hanna J, Panelli R, Chapman D, Jeffs T)