title: [Quality of life of very disabled children: a questionnaire about the role of health status and tube feeding].
abstract: To resort to gastrostomy feeding is a difficult decision to take in children with severe disability, the objective being better quality of life.
  
  
  OBJECTIVE
  To describe quality of life in children with severe disability and to look for factors which influence this quality of life, in particular gastrostomy.
  
  
  METHODS
  Descriptive study in 28 patients, aged 1 to 18 years, with severe motor and mental disability, with or without gastrostomy. The studied factors were: health and nutritional status and quality of life. The quality of life was evaluated with QUALIN questionnaire, specifically designed for infants.
  
  
  RESULTS
  This questionnaire was pertinent and well accepted by the family. Quality of life was influenced by capacity of communication (P=0.006), quality of sleeping (P=0.004), digestive problems (P<0.05) and age (P=0.031).
  
  
  CONCLUSIONS
  Gastrostomy did not impair quality of life. Its benefit was estimated as high as 8.71/10 in average by parents.
authors.affiliation: Service de Neuropédiatrie, Hôpital Debrousse, Lyon, France. elisabeth.andre@chu-lyon.fr
authors.forename: E
authors.initials: E
authors.lastname: André
authors.forename: I
authors.initials: I
authors.lastname: Hodgkinson
authors.forename: C
authors.initials: C
authors.lastname: Bérard
authors.forename: V
authors.initials: V
authors.lastname: des Portes
mesh_terms: D000293:Adolescent; D000367:Age Factors; D002648:Child; D002675:Child, Preschool; D003142:Communication; D019988:Children with Disabilities / Q000523:psychology*; D005602:France; D005767:Gastrointestinal Diseases / Q000523:psychology; D005774:Gastrostomy; D006304:Health Status; D006801:Humans; D007223:Infant; D011788:Quality of Life; D012720:Severity of Illness Index; D012890:Sleep; D011795:Surveys and Questionnaires