[重度残疾儿童的生活质量：一份关于健康状况和管饲作用的调查问卷]
[Quality of life of very disabled children: a questionnaire about the role of health status and tube feeding].
作者信息
André E, Hodgkinson I, Bérard C, des Portes V
机构信息
Service de Neuropédiatrie, Hôpital Debrousse, Lyon, France.
出版信息
Arch Pediatr. 2007 Sep;14(9):1076-83. doi: 10.1016/j.arcped.2007.03.027. Epub 2007 Apr 27.
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.
未标注
对于重度残疾儿童而言，采用胃造口术喂养是一个艰难的决定，目标是提高生活质量。
目的
描述重度残疾儿童的生活质量，并寻找影响这种生活质量的因素，尤其是胃造口术。
方法
对28例年龄在1至18岁之间、患有重度运动和智力残疾、有或没有胃造口术的患者进行描述性研究。研究因素包括：健康和营养状况以及生活质量。生活质量采用专门为婴儿设计的QUALIN问卷进行评估。
结果
该问卷具有相关性且被家庭广泛接受。生活质量受到沟通能力（P = 0.006）、睡眠质量（P = 0.004）、消化问题（P < 0.05）和年龄（P = 0.031）的影响。
结论
胃造口术并未损害生活质量。家长对其益处的平均评价高达8.71/10。
Zotero 插件