Nouveaux guides pour améliorer la coordination des soins et de l’accompagnement des personnes atteintes d’épilepsie en France

“To ensure that the care path no longer resembles an obstacle course, it was necessary to make it more structured and transparent,” says Christophe Lucas, president of the association Epilepsie France. Message received loud and clear by the Haute Autorité de Santé (A). After publishing, in 2020, good practice recommendations on the management of this neurological disease, it publishes, in June 2023, in collaboration with the Assurance Maladie, a guide on the healthcare journey of people with epilepsy. Or rather two, one specifically dedicated to adults and the other to children, in order to offer appropriate care and support. The objectives? Optimize diagnosis, promote coordination among all actors involved in personalized care, and ultimately improve the quality of life of those affected.

A long and varied care journey

“To put things in their proper context,” Christophe Lucas emphasizes that “the care journey of these patients is long and varied.” “Firstly, due to the diversity of forms and expressions of epilepsy, but also due to a general lack of knowledge about the condition (…),” he continues. “The diagnosis announcement is often abrupt, and the support that can be expected is not there. As for epilepsy monitoring, unfortunately, it does not always take into account the numerous repercussions on daily life.” Wanting to change the status quo, these guides are primarily aimed at regional health agencies (ARS) responsible for organizing epilepsy networks in the regions, as well as healthcare professionals (general practitioners, pediatricians, neurologists, neuropediatricians, nurses…) and patient associations.

A graduated and adapted support

They contain several tools to precisely describe the stages of appropriate care (comprehensive assessment of individuals’ situation, care, support, follow-up), as well as the role, position, and coordination methods of healthcare professionals involved based on the degree of complexity of the situation, and finally, the involvement of patients in their journey and the decisions that concern them, based on their experiential knowledge. Thus, healthcare professionals and those affected can together build a graduated care plan that takes into account the needs of each person (driving, employment, education, leisure activities…), their lifestyle, personal and professional projects… This journey also aims to optimize the use of complementary tests for diagnosis, as well as to reduce unnecessary healthcare utilization and, conversely, increase it when necessary. The goal is to avoid any missed opportunities. Due to specific features of epilepsy in elderly people, a dedicated journey has been developed.

First results by the end of 2023?

“Taking into account the complexities of epilepsy and its associated disorders, prioritizing the steps of the pediatric and adult healthcare journeys, as well as recommendations for assisting the transition from adolescence to adulthood, should optimize care at all stages of the journey, from the diagnosis announcement and facilitate hospital management,” says Christophe Lucas. According to him, “the comprehensive view of these journeys brings a certain clarity that was lacking until now.” To ensure this, indicators to measure their quality are currently being developed by the HAS. The verdict is expected in the second half of 2023!
“In order for the practical implementation of these recommendations to be successful,” Epilepsie France emphasizes “the indispensable financial involvement, both from the Ministry of Health and the ARS.” Finally, the association highlights the need to “bring epilepsy out of the shadows,” ensuring that “there is still much to be done.”