[Quality of life of very disabled children: a questionnaire about the role of health status and tube feeding].

UNLABELLED:To resort to gastrostomy feeding is a difficult decision to take in children with severe disability, the objective being better quality of life. OBJECTIVES:To describe quality of life in children with severe disability and to look for factors which influence this quality of life, in particular gastrostomy. METHOD: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). CONCLUSION:Gastrostomy did not impair quality of life. Its benefit was estimated as high as 8.71/10 in average by parents.