title: The perceived burden of epilepsy: Impact on the quality of life of children and adolescents and their families.
abstract: OBJECTIVE
  The assessment of the quality of life (QoL) is relevant for a comprehensive treatment of patients with epilepsy. In children and adolescents, an impact of epilepsy on the QoL of the entire family is expected.
  
  
  METHODS
  We asked 293 parents of children and adolescents with epilepsy, included in an observational study on treatment satisfaction, to evaluate the impact of the disease on several aspects of the QoL of the whole family using a specifically organized questionnaire (IEQoL).
  
  
  RESULTS
  The degree of parents' concerns about epilepsy and the severity of the disease correlated with a deterioration of QoL in both the children and the family. This involved all aspects of QoL (conflicts within the family, job, leisure activities, peer relationship, economy) although to a different degree. Parents frequently admitted increased apprehensiveness, even when not justified by the low severity of the disease. There was general agreement between parents and their adolescent children, although in a few cases adolescents overrated their school and daily performance in respect to the parents, suggesting a tendency to overlook their problems.
  
  
  CONCLUSIONS
  Epilepsy impairs all aspects of QoL, although at different degree, both in children/adolescents and in their families. Parental apprehensiveness appears to have a role on this, and it may not reflect the severity of the disease.
authors.affiliation: Clinic of Child and Adolescent Neuropsychiatry, University, Azienda Ospedaliero-Universitaria, Cagliari, Italy. Electronic address: cianchet@unica.it.
authors.forename: Carlo
authors.initials: C
authors.lastname: Cianchetti
authors.affiliation: Department of Neurosciences, IRCSS - Istituto for Pharmacological Research "Mario Negri", Milano, Italy.
authors.forename: Paolo
authors.initials: P
authors.lastname: Messina
authors.affiliation: Department of Neurosciences, IRCSS - Istituto for Pharmacological Research "Mario Negri", Milano, Italy.
authors.forename: Elisabetta
authors.initials: E
authors.lastname: Pupillo
authors.affiliation: Department of Pediatrics, DPMSC, "Santa Maria della Misericordia" University Hospital, Udine, Italy.
authors.forename: Giovanni
authors.initials: G
authors.lastname: Crichiutti
authors.affiliation: Child Neuropsychiatry Unit, "Giannina Gaslini" Institute, Genoa University, Genova, Italy.
authors.forename: Maria Giuseppina
authors.initials: MG
authors.lastname: Baglietto
authors.affiliation: Child Neuropsychiatry Unit, Foundation Neurological Institute "C. Mondino", Pavia, Italy.
authors.forename: Pierangelo
authors.initials: P
authors.lastname: Veggiotti
authors.affiliation: Child Neuropsychiatry Unit, "G. Salesi" Pediatric Hospital, Ancona, Italy.
authors.forename: Nelia
authors.initials: N
authors.lastname: Zamponi
authors.affiliation: Child Neuropsychiatry Unit, University Hospital, Sassari, Italy.
authors.forename: Susanna
authors.initials: S
authors.lastname: Casellato
authors.affiliation: Child Neuropsychiatry Unit, University Hospital, Bari, Italy.
authors.forename: Lucia
authors.initials: L
authors.lastname: Margari
authors.affiliation: Department of Neurosciences, IRCSS - Istituto for Pharmacological Research "Mario Negri", Milano, Italy; Department of Neurology, SEC, University of Rochester, Rochester, NY, United States.
authors.forename: Giuseppe
authors.initials: G
authors.lastname: Erba
authors.affiliation: Department of Neurosciences, IRCSS - Istituto for Pharmacological Research "Mario Negri", Milano, Italy.
authors.forename: Ettore
authors.initials: E
authors.lastname: Beghi
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D004827:Epilepsy / Q000191:economics* / Q000523:psychology*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D019370:Observation; D010290:Parents / Q000523:psychology*; D010465:Perception; D011788:Quality of Life; D011795:Surveys and Questionnaires; D014481:United States
keywords: Adolescents; Children; Epilepsy; Family; Parents; Quality of life