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Still too often the subject of diagnostic error, sometimes unsuitable care and a lack of support for patients, epilepsy requires improved care. To clarify all this, the High Authority of Health publishes a guide on the health course of patients affected by this neurological disease.
About 1% of the population is affected by epilepsy, a chronic neurological disease that occurs in seizures, most of the time. But although it is very common – it is the second most common chronic neurological disease after migraine – the patient journey can be a veritable obstacle course, both to make a diagnosis but also to benefit from appropriate support.
The High Authority for Health publishes a guide for patients
Faced with this observation, the High Authority for Health, in collaboration with the Health Insurance, publishes a guide on the health course of people with epilepsy. With several objectives: “improve the diagnosis, promote the coordination of all the actors involved in personalized care and, ultimately, improve the quality of life of the people concerned” details the HAS press release.
A health journey structured according to the severity of the disease
The health course offered by HAS and Health Insurance describes:
- The different stages of appropriate care for children and adults with epilepsy;
- The role, place and methods of coordination of the health professionals involved according to the degree of complexity of the situation;
- The participation of patients in their journey and in the decisions that concern them, based on their experiential knowledge.
These recommendations, intended for professionals, in particular ARS and patient associations, aim to “to optimize the use of complementary examinations for the diagnosis, to improve the quality of life of the person and the prognosis of the disease, and to ensure that the situation of each patient is evaluated in a global and multidimensional way for management personalized consequences of epilepsy”.
Epilepsy, a disease that requires specific care
If the HAS decided to seize the subject, it is because epilepsy is a chronic neurological disease “which can greatly alter the quality of life of those affected due to the occurrence of epileptic seizures but also the psychiatric, cognitive and social consequences of the disease”.
Moreover, “While the recommendations affirm the need for the diagnosis of the disease to be made by a neurologist, a neuropediatrician or a doctor trained in epileptology, the data from the Health Insurance show that more than one patient out of 5 to whom an antiepileptic has been prescribed, was seen only by a general practitioner”. In the second half of 2023, HAS plans to complete this course with “measurement indicators” of its quality.