The French sentinel network for epilepsy-related mortality
[Part 1: Facts; Picot M-C & Larquier B]
‘Do not mention it ...’ ’We're not ready ...’ said the neurologists in 2004 when, after the death of her daughter Aurélie, Bernadette Larquier wanted to engage in reflection and actions to be taken with the epilepsy community, the patients with epilepsy and their families.
Two years later, the French League Against Epilepsy (LFCE) established the commission on mortality with Bernadette representing the bereaved families. By listening to people with epilepsy and their families, health professionals and the bereaved families, we were able to plan what needed to happen. But, it was not until 2008 that the LFCE made mortality a priority for action. A French network, the Réseau Sentinelle Mortalité Epilepsie (RSME), was established by the LFCE and launched in 2010 with its development supported by the French Foundation for Epilepsy Research (FFRE).
The RSME aims to record causes and circumstances of epilepsy-related deaths in France, to evaluate the expectations and needs of bereaved families and to support them. The network also means we have a national database for future research programs.
Today, the network encompasses approximately 120 practitioners including neurologists, epileptologists and neuro-pediatricians from each region of France. An epidemiologist and a project manager of the University Hospital of Montpellier ensure the functioning, by relying on a steering committee including physicians, bereaved families, representatives of the LFCE and FFRE, researchers in basic science, psychologists and nurses.
The RSME also includes a network of about a dozen bereaved families. The bereaved person is isolated and finding support from the network is essential. It is very helpful to get in touch with other people who have experienced this tragedy and try to put words to the unacceptable. Families say it is a relief ’…to finally talk about living with epilepsy…’, ’…being able to say what the family circle cannot hear…’. About one hundred families have been assisted, mothers most often, but sometimes fathers, and more and more brothers and sisters. A booklet for bereaved families was also developed by the network and a website provides information to patients, their families and health professionals about mortality risk and the role of the network. As well being a resource, the network is a platform for exchange between health professionals.
The RSME register has been recording epilepsy-related deaths since January 2010. In cases of SUDEP, bereaved relatives are interviewed by a psychologist to document death circumstances, comorbidities, history of epilepsy, family medical history, life events and lifestyle. The epileptologist who made the initial diagnosis of epilepsy completes the detailed epilepsy and medical history. Each case is reviewed by an expert committee to validate the cause of death.
Today, 160 deaths have been recorded, including 112 cases of SUDEP and 65 interviews with bereaved families. Half of the families report having sufficient information about their relative’s epilepsy. Nearly two-thirds of the families claimed that they were well informed about the risks associated with epilepsy. Most of them were informed about the risk of drowning or traffic accidents, and a small number of them mentioned the risk associated with status epilepticus. Eighty-eight percent of these families mentioned not being informed about risk of SUDEP while 85% of them stated retrospectively that they would have preferred to know the existence of SUDEP. Difficult points to manage after death are: ’Why was I not informed’? ’If I had known, I could have ...’ Parents identified that with this information, they may have been more likely to increase compliance with treatment regimens and they would have been even more attentive to the medical care. Around 15% of the families indicated that they preferred not to be informed about the risk of SUDEP because of the lack of effective measures to prevent SUDEP and the increased stress and anxiety induced by this information.
At death, members of the mobile intensive care services and emergency physicians are the first physicians met by the families. These physicians are often unaware of SUDEP. Police are frequently called in cases of SUDEP. Families agree that these types of contact are often painful and stressful. Indeed, they seek answers to the causes and circumstances of death and find it difficult to accept questions or, worse, to be under suspicion. In a second stage, neurologists and general practitioners are also sought by families searching for answers. Families mention that they expect more communication and explanation about the cause of death. Some of them also expect more support from these professionals (27%) and a redirection to associations of bereaved families. Approximately 8% of families found the support adequate and needed nothing more.
The collected information provides valuable insights to understand early mortality in patients with epilepsy. SUDEP cases are more reported than other causes, probably because physicians are unprepared for a sudden and brutal death of their patient and can rely on the network to support bereaved families. Based on our register, a case-control study has been launched to identify specific risk factors of SUDEP.
Family interviews are a unique way to collect the bereaved relative’s feelings about the disease and the management of epilepsy. It helps us in the development of advice and therapeutic education for patients and their families, and in doing so helps to reduce the risks of death associated with epilepsy. In the case of SUDEP, this point is crucial for physicians facing a real dilemma between the duty to inform about the risk of SUDEP and the need to avoid increasing the anxiety of the patient and his or her family. It is important for physicians to identify how and when the risk of SUDEP should be discussed. Interviews with families provide valuable elements in answering these key questions.
Marie-Christine Picot, Coordination RSME, Epidemiology and Clinical Research Unit, University Hospital of Montpellier, France
Bernadette Larquier, Coordination Bereaved Families Network, Bordeaux, France
How to cite:
Picot M-C & Larquier B. The French sentinel network for epilepsy-related mortality. 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.