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评价乳糜泻患儿及其父母的生活质量:病例对照研究。

Evaluation of the quality of life of children with celiac disease and their parents: a case-control study.

机构信息

Division of Paediatrics, Hospital Polydoro Ernani de São Thiago, Florianópolis, SC, Brazil.

出版信息

Qual Life Res. 2012 Feb;21(1):77-85. doi: 10.1007/s11136-011-9930-7. Epub 2011 May 20.

Abstract

PURPOSE

The purpose of the present study was to evaluate the quality of life (QoL) of children with CD and of their parents and to compare it with that of children without CD and of their parents.

METHODS

A case-control study was conducted to evaluate the quality of life of children (5-12 years) with CD and one of their parents, compared to the QoL of children without CD (and their parents as their caregivers ). The QoL was assessed by applying the following questionnaires: AUQUEI (children) and WHOQOL-BREF (parents).

RESULTS

QoL was evaluated in 33 children with CD, 63 children without CD, and of their respective parents as their parent caregivers (96 adults). QoL total scores were similar between the groups of children with and without CD. However, in the Leisure dimension, the scores of children with CD were significantly lower than those of the controls (P = 0.029). Similarly, when assessing the QoL of the parents, we found scores significantly lower in the social dimension (P = 0.0196) for parents of children with CD compared to parents of children without CD. Family income presented an impact on the QoL in adults, but did not affect children. In CD group, children of mothers who had lower educational levels presented better scores in the function dimension, regarding self-care and autonomy.

CONCLUSIONS

There is an impairment of the QoL of children with CD and of their parents, with regard to social life, particularly in the leisure (children) and social (adults) dimensions.

摘要

目的

本研究旨在评估 CD 患儿及其父母的生活质量(QoL),并将其与无 CD 患儿及其父母的 QoL 进行比较。

方法

采用病例对照研究,评估 CD 患儿(5-12 岁)及其父母之一与无 CD 患儿(及其父母作为其照料者)的生活质量。采用以下问卷评估 QoL:AUQUEI(儿童)和 WHOQOL-BREF(父母)。

结果

共评估了 33 名 CD 患儿、63 名无 CD 患儿及其各自的父母(96 名成人)的 QoL。有 CD 和无 CD 患儿的 QoL 总分相似。然而,在休闲维度,CD 患儿的得分明显低于对照组(P=0.029)。同样,在评估父母的 QoL 时,我们发现 CD 患儿的父母在社会维度的得分明显低于无 CD 患儿的父母(P=0.0196)。家庭收入对成人的 QoL 有影响,但对儿童没有影响。在 CD 组中,母亲受教育程度较低的患儿在自理和自主功能维度的得分较好。

结论

CD 患儿及其父母的生活质量受损,尤其是在社交生活方面,特别是在休闲(儿童)和社会(成人)维度。

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