[脊柱裂患儿生活质量评价]。

Marianna Król, Marcin Sibiński, Maciej Stefański, Marek Synder
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引用次数: 0

摘要

该研究的目的是识别和评估影响脊柱裂儿童生活质量的因素。研究中有33名儿童(19名女孩和14名男孩),年龄在5到20岁之间。将患者分为两组,第一组为5 ~ 12岁17例,第二组为13 ~ 20岁16例。采用《脊柱裂患者健康相关生活质量问卷》和我们自行编制的问卷进行研究。年龄较小的孩子平均得分为158分,年龄较大的孩子平均得分为186分。在整个小组中,64%的孩子认为他们的生活质量很好,30%认为很好,6%认为一般。我们的病人中没有人认为他们的生活质量很差或很差。低龄儿童的视觉感知困难和大龄儿童的不能行走与较差的生活质量评估有关。住在房子里的大孩子比住在公寓楼里的孩子对生活质量的评估更好。绝大多数脊柱裂患儿都有良好的专科医疗护理。最常见的伴随疾病是脑积水和神经源性膀胱。
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[Assessment of life quality in children with spina bifida].

The aim of the study was identification and assessment of factors influencing quality of life in children with spina bifida. There were 33 children in the study (19 girls and 14 boys) in the age from 5 to 20 years. They were divided into 2 groups: first in the age from 5 to 12 years (17 patients) and second in the age from 13 to 20 years (16 patients). The Health-related Quality of Life in Spina Bifida Questionnaire and questionnaire done by us were used for the study. Younger children had average score of 158 points and older children average 186 points. In the whole group 64% of children assessed they quality of life as good, 30% as very good, 6% as average. None of our patients think that they quality of life is poor or very poor. Presence of visual perception difficulties in younger group and non-ambulation in alder children is related to poorer assessment of quality of life. Alder children that live in a house had better assessment of quality of life than children living in blocks of flats. Vast majority of children with spina bifida have good specialist medical care. Most common concomitant diseases are hydrocephalus and neurogenic urinary bladder.

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