Chez l’enfant à risque de crises d’épilepsie prolongées, le traitement exige une administration rapide de benzodiazépines par un accompagnant ou un proche formé à l’administration du médicament. Chez les enfants considérés à risque de convulsions prolongées, la possibilité d’une évolution vers un état de mal augmente à partir de la 5^e minute. Le traitement de ces crises au moment où elles surviennent permet souvent d’éviter une telle évolution et peut contribuer à éviter des interventions d’ambulances et des hospitalisations inutiles, tout en facilitant l’intégration scolaire de l’enfant.

L’étude PERFECT™ a été mise en place en 2011 afin d’établir un état des lieux des pratiques réelles d’administration des médicaments de secours en cas de crise d’épilepsie prolongée à travers l’Europe, en dehors du milieu hospitalier et plus particulièrement dans les écoles. Les conclusions initiales de cette étude en France sont qu’il existe un défaut de recommandations claires pour la prise en charge des enfants souffrant de crises prolongées d’épilepsie en dehors du milieu hospitalier.

Les principaux obstacles à une prise en charge appropriée sont un manque d’informations et de connaissance, une formation inadéquate des accompagnants qui encadrent l’enfant, en particulier des enseignants, sur les crises prolongées et leur prise en charge et un manque de recommandations et de cadres juridiques clairs et cohérents pour orienter les pratiques. Pour qu’une prise en charge médicamenteuse des crises épileptiques prolongées soit systématique, une action concertée devra être mise en place entre les secteurs de la santé et de l’enseignement pour combler ces lacunes. Toutes les parties concernées devront également reconnaître qu’il s’agit là d’une étape cruciale pour favoriser l’intégration sociale de la catégorie vulnérable des enfants atteints d’épilepsie.

Guidelines recommend that any epileptic seizure that lasts more than 5min (prolonged seizures) be treated immediately with benzodiazepines in order to prevent progression to status epilepticus. However, there is very little published information on how such seizures are managed outside of the hospital setting, for example in schools or at home. This paper presents the initial results, specific to France, of the Practices in Emergency and Rescue medication For Epilepsy managed with Community-administered Therapy (PERFECT™) Initiative, which was set up in 2011 to gain a better understanding of how prolonged convulsive seizures are managed and rescue medication is administered in out-of-hospital settings across Europe.

The PERFECT Initiative was conducted in six countries (France, Germany, Italy, Spain, Sweden, the United Kingdom) and consists of three phases. This paper reports on the first two phases of this study and focuses on findings for France. Phase I of the PERFECT initiative consisted of a review of existing clinical guidelines, guidance to schools, and relevant policy and legal frameworks in France, from both published and web-based sources. Phase II consisted in a telephone survey of 20 pediatricians, pediatric neurologists, and neurologists who treat children with prolonged convulsive seizures in France in order to obtain their views on how prolonged seizures are managed outside of hospitals. Phase III is ongoing and consists of a survey of children with prolonged seizures and their caregivers.

Existing clinical guidelines pertain mainly to the hospital setting and contain very little informations on how prolonged seizures should be managed outside the hospital. Guidance to schools is unclear as to whether teachers are allowed to administer rescue medication to children and legal frameworks are full of contradictions. As a result, whether or not children who experience prolonged seizures receive their rescue medication during school hours depends mostly on the resources and training available in each school. Healthcare professionals stated that lack of information on prolonged seizures and their management, as well as a lack of up-to-date guidance specific to schools were considerable obstacles to a systematic approach to managing prolonged seizures outside of the hospital.

In France and elsewhere, there has been growing recognition of substantial gaps in the provision of care to children with epilepsy in recent years. However, the issues that arise for children who require rescue medication for prolonged seizures outside of hospitals are conspicuously absent from policy documents or clinical guidelines. This lack of information, combined with insufficient training in schools on epilepsy, and inadequate guidelines create a situation in which schools are likely to call an ambulance every time a child has a prolonged seizure, therefore risking delays in treatment, and putting the child at risk of status epilepticus and clinical sequelae, not to mention stigmatization at school.

There is a need for more explicit guidance covering educational and healthcare settings, clearer information to parents and schools, and more systematic training to be made available to caregivers in order to ensure that all children at risk of prolonged seizures receive their prescribed rescue medication as quickly as possible, regardless of where their seizure occurs.