Developing a charity based epilepsy deaths register
[Part 1: Facts; Smithson WH & Hanna J]
In 2008, the support charity SUDEP Action and King’s College London discussed concerns about lack of data for ongoing surveillance and research into SUDEP and convened an epilepsy deaths register workshop. Experts participating from across the UK recommended the importance of an initiative of this kind to meet the need for:
data for genetic studies;
epidemiological data, including a minimum case dataset (name, age, address, location of death, +/-duration and control of epilepsy, antiepileptic drugs, co-morbidity);
bio-medical data concerning epilepsy, management and treatment;
data concerning circumstances leading up to death, including lifestyle and adherence to advice;
data concerning the investigation of death and the way the death was managed.
Funding for a national UK register was explored with the government, NIHR and other major funders. Sadly, in contrast to the US, where national funding has been ring-fenced for register development, funding for register infrastructure in the UK has been challenging. An incremental approach to developing a charity hosted registry has been dictated by the absence of national funding.
The initial priority of the Epilepsy Deaths Register (EDR) has been to develop family-based reporting, because:
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;
family consent is vital to donation of tissue after death; and
confidentiality of data is owed to the family.
In this way the EDR is aimed at supplementing the registries under development in Europe and the USA, which are focused on reporting from epilepsy monitoring units or specialist centres. The EDR is aimed at being an easily accessible register for direct reporting by families and, through collaboration with other initiatives, will contribute to a better understanding of epilepsy-related mortality.
Families who are outside the UK can register a death on the EDR and SUDEP Action liaises with these families to ensure they have the opportunity to link with any country based registry. Epilepsy Ireland has recently partnered SUDEP Action to develop an EDR for Ireland, which uses and builds on the same infrastructure. This international aspect of the EDR has also attracted the interest and support of other not-for-profit organisations in Australia and Canada.
SUDEP Action has a professional infrastructure with experienced counsellors with training and experience supporting bereaved families in research. Many of the families participating are traumatised and it is vital that their experience is supported by professionals understanding the complexity of the post-death setting for bereaved families. The charity also has an extensive network with researchers and clinicians nationally and internationally, so was well placed to implement a register strategy initially focused on involving bereaved families. The Project Management Committee for the EDR includes researchers from across the UK and Ireland.
The charity worked with health professionals and academic partners to initially identify the requirements of a family focused register. An on-line register of epilepsy deaths was set up in the UK in March 2013. This register is owned and managed by SUDEP Action in collaboration with research teams. Academic and not- for- profit organisations are helping to promote the EDR.
The EDR is accessible to reporters in the UK and internationally. Families in contact with the charities are offered the chance to report the death through the EDR and most families are keen to do this to help ‘others benefit from our experience’.
Accessibility, confidentiality and consent are core to the operation of the EDR.
The EDR offers dedicated reporting via telephone, post or on-line reporting. The EDR team based at SUDEP Action provides a service helping people with any difficulties they experience making a registration, as well as a caller-led support service.
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 minutes to complete. The overwhelming majority of reporters do choose to participate in the detailed question frame, but they are able to choose the time when they want to participate and can revisit their registration over 7 days.
“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.”
The majority of registrations have used the online facility for reporting and this suggests that people registering a death value reporting from the comfort and the privacy of their own home. As researchers we have been impressed by the high quality and detail that families have been able to contribute to the register.
Register entries are reviewed by the register team to identify dual reporting of the same case and to integrate information under a unique case identifier.
The registry currently collects demographic and descriptive data of the circumstances leading up to death. Layer 1 collects a minimum data set of deceased and reporter (most commonly families and friends) to build an epidemiological database to inform health strategists.
The question frame was developed through literature review and panel meetings with families and professionals. These were used to develop the question frame that was then iteratively tested by bereaved families and by Professor Smithson and the register research assistant, Brigitte Colwell (Sheffield).
The first such collaboration was agreed between the EDR 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 EDR and the Epilepsy Society Brain and Tissue Bank with bereaved families.
In the first year (March 2013-February 2014) 275 cases from 5 countries have been registered, the majority of cases reported are from the UK, with 15% of cases from North America. The number of deaths recorded as SUDEP (102/214) suggests that the knowledge of SUDEP has increased amongst pathologists and coroners. The EDR is endorsed by government and epilepsy charities are helping to raise awareness of the EDR. 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. Emergent themes from free text comments include gaps in knowledge and support, from both families and health care professionals:
“...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...”
W Henry Smithson, Professor of General Practice, University College Cork, National University of Ireland, UK
Jane Hanna, CEO, SUDEP Action, UK
How to cite:
Smithson WH & Hanna J. Developing a charity based epilepsy deaths register. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.
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