{'fraction_non_alphanumeric': 0.03676470588235294, 'fraction_numerical': 0.02297794117647059, 'mean_word_length': 4.761904761904762, 'pattern_counts': {'":': 0, '<': 1, '<?xml version=': 0, '>': 0, 'https://': 0, 'lorem ipsum': 0, 'www.': 0, 'xml': 0}, 'pii_count': 0, 'substrings_counts': 0, 'word_list_counts': {'cursed_substrings.json': 0, 'profanity_word_list.json': 0, 'sexual_word_list.json': 0, 'zh_pornsignals.json': 0}}
[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.