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Archives de pédiatrie
Volume 14, n° 9
pages 1076-1083 (septembre 2007)
Doi : 10.1016/j.arcped.2007.03.027
Received : 6 December 2006 ;  accepted : 27 Mars 2007
Qualité de vie de l'enfant polyhandicapé: questionnaire portant sur l'influence de l'état de santé et de l'alimentation entérale
Quality of life of very disabled children: a questionnaire about the role of health status and tube feeding
 

E. André a, b, , I. Hodgkinson b, C. Bérard b, V. des Portes a
a Service de neuropédiatrie, hôpital Debrousse, 29, rue Soeur-Bouvier, 69322 Lyon cedex 05, France 
b Service de rééducation fonctionnelle pédiatrique l'Escale, pavillon 6F, centre hospitalier Lyon-Sud, 165, chemin du Grand-Revoyet, 69495 Pierre benite cedex, France 

Auteur correspondant.
Résumé

Le recours à la gastrostomie d'alimentation est une décision difficile à prendre chez l'enfant polyhandicapé. Le maintien d'une bonne qualité de vie (QdV) est un objectif commun pour les parents et pour les soignants. Nous avons cherché à décrire la QdV subjective d'enfants polyhandicapés et les facteurs qui l'influencent, en particulier la gastrostomie.

Méthode

Étude transversale descriptive chez 28 patients de 1 à 18 ans ayant un handicap moteur et mental sévère, ayant ou non une gastrostomie. L'étude comportait une description de l'état de santé et de l'état nutritionnel de l'enfant, ainsi qu'une étude de la QdV à l'aide du questionnaire QUALIN, élaboré pour le nourrisson.

Résultats

Le questionnaire a été bien accepté et de nombreuses questions apparaissaient pertinentes pour cette population. La QdV était influencée par le degré de communication (p = 0,006), la qualité du sommeil (p = 0,004), les troubles digestifs (p <0,05) et l'âge (p =0,031).

Conclusion

La gastrostomie d'alimentation ne compromet pas la QdV d'enfants polyhandicapés. Son bénéfice est estimé à 8,71 sur 10 en moyenne par les parents.

The full text of this article is available in PDF format.
Abstract

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.

The full text of this article is available in PDF format.

Mots clés : Polyhandicap, Gastrostomie, Qualité de vie

Keywords : Disabled children, Developmental disabilities, Enteral nutrition, Gastrostomy, Quality of life




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