title: Epilepsy diagnostic and treatment needs identified with a collaborative database involving tertiary centers in France.
abstract: OBJECTIVE
  To obtain perspective on epilepsy in patients referred to tertiary centers in France, and describe etiology, epilepsy syndromes, and identify factors of drug resistance and comorbidities.
  
  
  METHODS
  We performed a cross-sectional analysis of the characteristics of 5,794 pediatric and adult patients with epilepsy included in a collaborative database in France between 2007 and 2013. Comparisons between groups used Student's t-test or Fisher's exact test for binary or categorical variables. Factors associated with drug resistance and intellectual disability were evaluated in multi-adjusted logistic regression models.
  
  
  RESULTS
  Mean age at inclusion was 17.9 years; children accounted for 67%. Epilepsy was unclassified in 20% of patients, and etiology was unknown in 65%, including those with idiopathic epilepsies. Etiologies differed significantly in adult- when compared to pediatric-onset epilepsy; however, among focal structural epilepsies, mesial temporal lobe epilepsy with hippocampal sclerosis began as often in the pediatric as in adult age range. Drug resistance concerned 53% of 4,210 patients evaluable for seizure control and was highest in progressive myoclonic epilepsy (89%), metabolic diseases (84%), focal cortical dysplasia (70%), other cortical malformations (69%), and mesial temporal lobe epilepsy with hippocampal sclerosis (67%). Fifty-nine percent of patients with focal structural epilepsy and 69% with epileptic encephalopathies were drug resistant; however, 40-50% of patients with West syndrome and epileptic encephalopathy with continuous spike-and-waves during sleep were seizure-free. Ages at onset in infancy and in young adults shared the highest risk of drug resistance. Epilepsy onset in infancy comprised the highest risk of intellectual disability, whereas specific cognitive impairment affected 36% of children with idiopathic focal epilepsy.
  
  
  CONCLUSIONS
  Our study provides a snapshot on epilepsy in patients referred to tertiary centers and discloses needs for diagnosis and treatment. Large databases help identify patients with rare conditions that could benefit from specific prospective studies.
authors.affiliation: Epilepsy Observatory, Paris, France.|Pediatric Neurosurgery Unit, Rothschild Foundation, Paris, France.
authors.forename: Mathilde
authors.initials: M
authors.lastname: Chipaux
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Clinical Neurophysiology, Lille University Medical Center, University of Lille, Lille, France.
authors.forename: William
authors.initials: W
authors.lastname: Szurhaj
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Clinical Neurophysiology, Grenoble University Hospital, Grenoble, France.|Grenoble Institute for Neurosciences, INSERM U836, Grenoble Alpes University, Grenoble, France.
authors.forename: Laurent
authors.initials: L
authors.lastname: Vercueil
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Pediatric Neurology, La Timone-Enfants Hospital, Marseille, France.
authors.forename: Mathieu
authors.initials: M
authors.lastname: Milh
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Pediatric Neurology, La Timone-Enfants Hospital, Marseille, France.|Henri Gastaut Hospital-Center Saint Paul, Marseille, France.
authors.forename: Nathalie
authors.initials: N
authors.lastname: Villeneuve
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Pediatric Neurology, Toulouse Children Hospital, Toulouse University Hospital, Toulouse, France.
authors.forename: Claude
authors.initials: C
authors.lastname: Cances
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Pediatric Neurology, Robert Debré Children Hospital, APHP, Paris, France.|INSERM U676, Paris, France.
authors.forename: Stéphane
authors.initials: S
authors.lastname: Auvin
authors.affiliation: Epilepsy Observatory, Paris, France.|Sleep Unit, Sainte Barbe Clinic, Strasbourg, France.
authors.forename: Serge
authors.initials: S
authors.lastname: Chassagnon
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Pediatrics, Rennes University Hospital, Rennes, France.
authors.forename: Sylvia
authors.initials: S
authors.lastname: Napuri
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Pediatrics, Rennes University Hospital, Rennes, France.
authors.forename: Catherine
authors.initials: C
authors.lastname: Allaire
authors.affiliation: Department of Clinical Neurophysiology, Pellegrin Hospital, Bordeaux University Hospital, Bordeaux, France.
authors.forename: Philippe
authors.initials: P
authors.lastname: Derambure
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Clinical Neurophysiology, Pellegrin Hospital, Bordeaux University Hospital, Bordeaux, France.
authors.forename: Cécile
authors.initials: C
authors.lastname: Marchal
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Pediatrics, PFME, CHBS, Lorient Hospital, Lorient, France.
authors.forename: Isabelle
authors.initials: I
authors.lastname: Caubel
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Pediatric Neurology, Angers University Hospital, Angers, France.
authors.forename: Brigitte
authors.initials: B
authors.lastname: Ricard-Mousnier
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Pediatric Neurology, Angers University Hospital, Angers, France.
authors.forename: Sylvie
authors.initials: S
authors.lastname: N'Guyen The Tich
authors.affiliation: Epilepsy Observatory, Paris, France.|Pediatric Neurosurgery Unit, Rothschild Foundation, Paris, France.|Department of Pediatric Neurology, Raymond Poincaré Hospital, Garches, France.|Paris Ile-de-France Ouest University, Paris, France.
authors.forename: Jean-Marc
authors.initials: JM
authors.lastname: Pinard
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Pediatric Neurology, APHP, Necker-Enfants Malades Hospital, Paris, France.|Imagine Institute, Paris Descartes University - Sorbonne Paris Cité, Paris, France.
authors.forename: Nadia
authors.initials: N
authors.lastname: Bahi-Buisson
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Pediatrics, Le Foll Hospital, Saint-Brieuc, France.
authors.forename: Claire
authors.initials: C
authors.lastname: de Baracé
authors.affiliation: Epilepsy Observatory, Paris, France.|Grenoble Institute for Neurosciences, INSERM U836, Grenoble Alpes University, Grenoble, France.|Neurology Department, Michallon Hospital, Grenoble University Hospital, Grenoble, France.
authors.forename: Philippe
authors.initials: P
authors.lastname: Kahane
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Pediatrics, Nantes University Hospital, Nantes, France.
authors.forename: Agnès
authors.initials: A
authors.lastname: Gautier
authors.affiliation: Epilepsy Observatory, Paris, France.|Neurology Department, Michallon Hospital, Grenoble University Hospital, Grenoble, France.|Pierre Oudot Hospital, Bourgoin-Jallieu, France.
authors.forename: Sophie
authors.initials: S
authors.lastname: Hamelin
authors.affiliation: Epilepsy Observatory, Paris, France.|Medical and Educative Institute for Children with Epilepsy, St. Maur, France.
authors.forename: Delphine
authors.initials: D
authors.lastname: Coste-Zeitoun
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Clinical Neurophysiology and of Neurology, Gabriel Montpied Hospital, Clermont-Ferrand University Hospital, Clermont-Ferrand, France.|IGCNC - EA 7282, UMR 6284 ISIT, Auvergne University, Auvergne, France.
authors.forename: Sarah-Dominique
authors.initials: SD
authors.lastname: Rosenberg
authors.affiliation: Orgametrie, Biostatistics, Roubaix, France.
authors.forename: Pierre
authors.initials: P
authors.lastname: Clerson
authors.affiliation: Department of Pediatric Neurology, APHP, Necker-Enfants Malades Hospital, Paris, France.|Reference Center for Rare Epilepsies, Department of Pediatric Neurology, Necker-Enfants Maladies Hospital, APHP, Paris, France.|INSERM U1129, Paris, France; Paris Descartes University, Sorbonne Paris Cité, CEA, Gif sur Yvette, France.
authors.forename: Rima
authors.initials: R
authors.lastname: Nabbout
authors.affiliation: Epilepsy Observatory, Paris, France.|Department of Pediatrics, Rennes University Hospital, Rennes, France.|Department of Clinical Neurophysiology, Rennes University Hospital, Rennes, France.
authors.forename: Mathieu
authors.initials: M
authors.lastname: Kuchenbuch
authors.affiliation: Epilepsy Observatory, Paris, France.|Clinical Research Unit, La Colombière Hospital, University Hospital of Montpellier, Montpellier, France.|CIC 1411, INSERM, Montpellier, France.
authors.forename: Marie-Christine
authors.identifier: http://orcid.org/0000-0003-4204-7299
authors.initials: MC
authors.lastname: Picot
authors.affiliation: Epilepsy Observatory, Paris, France.|INSERM U1129, Paris, France; Paris Descartes University, Sorbonne Paris Cité, CEA, Gif sur Yvette, France.|Department of Clinical Neurophysiology, Necker-Enfants Malades Hospital, APHP, Paris, France.
authors.forename: Anna
authors.initials: A
authors.lastname: Kaminska
mesh_terms: D000293:Adolescent; D000328:Adult; D017677:Age Distribution; D000367:Age Factors; D017668:Age of Onset; D000368:Aged; D000369:Aged, 80 and over; D001927:Brain Diseases / Q000453:epidemiology; D002648:Child; D015331:Cohort Studies; D003430:Cross-Sectional Studies; D016208:Databases, Factual / Q000706:statistics & numerical data*; D004827:Epilepsy / Q000175:diagnosis / Q000453:epidemiology / Q000628:therapy; D005260:Female; D005602:France / Q000453:epidemiology; D006801:Humans; D008297:Male; D008875:Middle Aged; D062606:Tertiary Care Centers / Q000706:statistics & numerical data*; D055815:Young Adult
keywords: Drug-resistant epilepsy; Epilepsy database; Epilepsy etiology; Epilepsy syndrome; Epileptic encephalopathy