title: Parental view of epilepsy in Rett Syndrome.
abstract: Few instruments exist to measure the impact of epilepsy on the quality of life in Rett Syndrome (RS).
  
  
  METHODS
  We attended to describe seizures characteristics, parental opinion and quality of life related in RS by using a newly developed self administered questionnaire, postal sent to parents of French Association for Rett Syndrome (AFSR).
  
  
  RESULTS
  Two-hundred completed questionnaires were returned. Mean age of patients was 14.8+/-8.1 years [3-42]. Parents reported that 70% of children had epileptic and non-epileptic seizures and mean age at first seizures was 7.3+/-5.1 years [1-24]. No statistical difference was found between the ages of first seizures, diagnosis of epilepsy and introduction of treatment. Seizures had a negative impact on child and family's life (68% of cases), strongly correlated to the existence of generalized, prolonged, cyanotic and drug-resistant seizures, on the child's level of alertness and progress in communication skills and psycho-social consequences such as fear of seizures, and difficulties to find home care aids.
  
  
  CONCLUSIONS
  We identified major concerns of parents with RS that determine the impact of seizures on children and their family's quality of life. Our results suggest that in order to improve seizures management in RS, better information should reduce fear about seizures and should improve the quality of life of RS.
authors: Service de Neuropédiatrie et Maladies, Assistance Publique-Hôpitaux de Paris, Métaboliques Hôpital Necker Enfants Malades, Paris, France. nadia.bahi-buisson@nck.ap-hop-paris.fr
authors: Nadia
authors: N
authors: Bahi-Buisson
authors: Bahi-Buisson
authors: BB
authors: Nadia
authors: Isabelle
authors: I
authors: Guellec
authors: Guellec
authors: G
authors: Isabelle
authors: Rima
authors: R
authors: Nabbout
authors: Nabbout
authors: N
authors: Rima
authors: Agnès
authors: A
authors: Guet
authors: Guet
authors: G
authors: Agnès
authors: Gérard
authors: G
authors: Nguyen
authors: Nguyen
authors: N
authors: Gérard
authors: Olivier
authors: O
authors: Dulac
authors: Dulac
authors: D
authors: Olivier
authors: Catherine
authors: C
authors: Chiron
authors: Chiron
authors: C
authors: Catherine
mesh_terms: D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D004827:Epilepsy / Q000209:etiology* / Q000523:psychology*; D005192:Family Health; D005260:Female; D006305:Health Status Indicators; D006801:Humans; D007223:Infant; D008297:Male; D010290:Parents / Q000523:psychology*; D015518:Rett Syndrome / Q000150:complications*; D011795:Surveys and Questionnaires