Benefits of the epilepsy specialist nurses (ESN) role, standardized practices and education around the world.

Epilepsy, often considered as a stigmatizing disease, affects 65 million people worldwide and is frequently associated with comorbidities that increase both direct and indirect costs. The degree of impact on quality of life and the cost of care differs depending on the social and health care organizations in place, political, medico-economic and/or socio-cultural contexts. Across the globe, healthcare is provided by nurses in primary care, urgent or emergency care, and within specialized domains of practice. In Epilepsy the global care could be enhanced by developing standardized nursing education in close collaboration with other caregivers. The impact of epilepsy nursing care has been documented in some developed countries, but the diversity of nursing practices and professional education of nurses raise difficulties in generalizing these findings. Specialized education in epilepsy will improve access, treatment and ultimately the quality of life of patients.

[A national framework for educational programs in epileptic patients, children and adults]. / Un référentiel national pour l'éducation thérapeutique des patients atteints d'épilepsie(s), enfants et adultes.

Epilepsy is a chronic disease with a wide range of presentations occurring at any age. It affects the patient's quality of life, implying a need for numerous healthcare services. Therapeutic education programs (TEPs) are designed to match patient age, disease course, and individual learning abilities. In France, these programs are proposed by the national health authorities (Superior Health Authority), and authorized by the Regional Health Agencies. Two years ago, a Therapeutic Education Programs Commission (TEPC), supported by the French League against Epilepsy (FLAE), was created. The goal was to bring together representative healthcare professionals in a working group in order to standardize practices. This led to the creation of a national reference of healthcare skills specific for children and adults with epilepsy. Five tables, for five "life periods", outline the framework of this professional reference tool. Program personalization, an essential part of TEPs, is necessary to develop a creative atmosphere. This slow process is specific to the various stages of life and can be influenced by the occurrence of various handicaps. Family and caregivers make key contributions to the process. The national framework for therapeutic education in epilepsy serves as a central crossroad where professions can find essential information to create or adapt their own TEPs. In the near future, regional experiences will be documented and collected for regular updates. This professional therapeutic education network will help promote therapeutic education programs and facilitate standard practices. Finally, several TEP files and tools will be shared on the FLAE website available for professional access. Today, the group's goal is to achieve national deployment of this "referential" framework.