Saint-Denis, France— To optimize the healthcare journey for people with epilepsy in France, the Haute Autorité de Santé in collaboration with the Assurance Maladie has published two guides, one for adults and one for children (see illustrations at the end of the text).
Combating current dysfunctions
During a press conference, Pr Lionel Collet, President of the HAS, justified the importance of these guides due to a number of dysfunctions in the current care.
“It must be recognized that there is a strong disparity in the medical management of people with epilepsy, as well as a lack of support for the consequences of the disease on quality of life in daily, emotional, social, professional, or educational dimensions,” he emphasized.
According to a study by the Assurance Maladie, for approximately 22% of patients, an antiepileptic is prescribed as a first prescription by a general practitioner without contact with a specialist neither in the 3 months preceding nor in the 12 months following the delivery of the medication. However, the decision to initiate drug treatment should be the responsibility of a neurologist.
Finally, only 13% of epileptic patients are followed by a private neurologist due to the difficulty of accessing a neurologist.
“All of this has confirmed the need to translate the 2020 recommendations into an optimal healthcare journey that must be adapted to the different types of epilepsy, with tools for each type of professional, and that must also integrate new professions such as advanced practice nurses and digital health,” emphasized Pr Collet.
“The quality of care provided by the healthcare system must be improved from diagnosis to the initiation of treatment and the follow-up of this chronic disease. Episodes like that of Depakine, for example, are there to demonstrate, if needed, the risks of insufficient quality of care,” added Dr Dominique Martin, President of the Cnam.
Improved coordination of care
Resulting from collaboration with healthcare professionals and patient associations, these healthcare journeys specify the steps from diagnosis to daily support.
They are primarily intended for regional health agencies to organize a regional epilepsy network and for healthcare professionals to clarify their respective roles in organizing the response to the needs of people with epilepsy and to facilitate appropriate referral to professionals at the right time so that individuals and their loved ones can navigate the journeys.
“The term epilepsy encompasses very diverse realities in terms of complexity, severity, and impact on daily life. Underlying causes such as traumatic brain injury, stroke, infectious problems, genetic diseases… will lead to the occurrence of seizures with varying recurrences and severities, but also diverse comorbidities that affect cognitive functions as well as the entire psychological sphere, with a significant proportion of anxiety and depressive disorders in particular. These highly variable clinical profiles require modulating the management with different levels,” commented Dr Cécile Sabourdy, epileptologist neurologist and hospital practitioner at CHU de Grenoble.
These highly variable clinical profiles require modulating the management with different levels.
3 levels of healthcare according to severity or complexity of the situation
Level 1 is the entry level in the healthcare journey. It is provided by the primary care physician (family doctor, school doctor, occupational doctor…) as well as emergency physicians. It is suitable for managing cases where the situation is simplest, especially for making the diagnosis. Professionals at this level also refer individuals with epilepsy to a higher level when local care is insufficient.
Level 2 corresponds to the neurologist for adults and the pediatrician for children, whose mission is to confirm the diagnosis, initiate treatment if necessary, screen for comorbidities, and interact with level 3, which corresponds to specialized epileptology teams in case of treatment resistance or difficulties.
Level 3 concerns the most severe or complex profiles, which are usually managed by neurologists or specialized neuropediatricians in epileptology and a specialized hospital team.
“We want a smooth transition between levels to avoid congestion in certain levels. This includes easy access to expert opinions in the form of occasional consultations, as well as joint assessments and telemedicine,” emphasized Cécile Sabourdy.
We want a smooth transition between levels to avoid congestion in certain levels.
Supporting individuals
The HAS emphasizes that the diagnosis of epilepsy should be followed by support, preferably multidisciplinary and tailored to the individual’s situation (healthcare, medical-social, school, work, psychological, paramedical, ETP, etc.). The care plan and support plan should be complementary.
“The idea is to rely on the emergence of new professions such as advanced practice nurses, as well as medical assistants and specialized resources such as epilepsy resource teams, in order to provide comprehensive support for all aspects, including seizures, comorbidities, psychosocial care, throughout the healthcare journey for people with epilepsy and their loved ones,” concluded Cécile Sabourdy.
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