title: [Prolonged convulsive seizures in children: how are they managed outside the hospital?].
abstract: OBJECTIVE
  Guidelines recommend that any epileptic seizure that lasts more than 5 min (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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Service épilepsie, sommeil et explorations fonctionnelles neuropédiatriques, centre de recherche en neurosciences de Lyon (CRNL), hôpital Femme-Mère-Enfant, hospices civils de Lyon (HCL) et Inserm U1028, CNRS UMR5292, 59, boulevard Pinel, 60700 Lyon, France. Electronic address: aarzimanoglou@orange.fr.
authors.forename: A
authors.initials: A
authors.lastname: Arzimanoglou
authors.affiliation: SHW Health Limited, 40, Lena-Gardens, Londres W6 7PZ, Royaume-Uni.
authors.forename: S
authors.initials: S
authors.lastname: Wait
authors.affiliation: Inserm, U676, service de neurologie pédiatrique, hôpital Robert-Debré, AP-HP, 75019 Paris, France.
authors.forename: S
authors.initials: S
authors.lastname: Auvin
authors.affiliation: Service de neurologie pédiatrique, université Paris Descartes et Inserm U781, Imagine, université Paris Descartes, hôpital Necker Enfants Malades, AP-HP, 75015 Paris, France.
authors.forename: N
authors.initials: N
authors.lastname: Bahi-Buisson
authors.affiliation: CHU d'Angers, 4, rue Larrey, 49933 Angers, France.
authors.forename: S
authors.initials: S
authors.lastname: Nguyen
mesh_terms: D001569:Benzodiazepines / Q000627:therapeutic use*; D002648:Child; D003431:Cross-Cultural Comparison; D004632:Emergency Medical Services / Q000331:legislation & jurisprudence; D004827:Epilepsy / Q000175:diagnosis / Q000188:drug therapy* / Q000209:etiology; D005602:France; D019983:Guideline Adherence; D006306:Health Surveys; D006801:Humans; D016365:Liability, Legal; D012572:School Health Services / Q000331:legislation & jurisprudence
chemical_list: D001569:Benzodiazepines