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学龄期脑瘫患儿生活质量的决定因素。

Determinants of life quality in school-age children with cerebral palsy.

作者信息

Majnemer Annette, Shevell Michael, Rosenbaum Peter, Law Mary, Poulin Chantal

机构信息

School of Physical & Occupational Therapy, McGill University, Montreal, Quebec, Canada.

出版信息

J Pediatr. 2007 Nov;151(5):470-5, 475.e1-3. doi: 10.1016/j.jpeds.2007.04.014. Epub 2007 Aug 24.

Abstract

OBJECTIVE

To characterize the quality of life of children with cerebral palsy from the parents' and children's perspectives.

STUDY DESIGN

Ninety-five children were recruited; a parent, and when feasible, the child also completed the Child Health Questionnaire and Pediatric Quality of Life Inventory. A range of predictor variables was measured relating to impairments, activity limitations, personal and environmental factors.

RESULTS

Mean age was 9.3 +/- 2.1 years; 63.2% were male, and almost half had mild motor impairment (47% Gross Motor Function Classification System level I). Mean physical well-being (Child Health Questionnaire) was 39.6 +/- 16.9 with 50% <40; and mean psychosocial well-being was 43.0 +/- 11.3 with 53.8% <40. Similarly, with the Pediatric Quality of Life Inventory, 61% had summary scores <1 SD. Scores of parents and their children were significantly correlated (physical: r = .59, P < .0001; psychosocial: r = .39, P = .01); however, children rated themselves higher.

CONCLUSIONS

Results indicate that quality of life is highly variable in children with cerebral palsy, with about half experiencing a life quality similar to typically developing children. Motor and other activity limitations are indicators of physical but not psychosocial well-being. Family functioning, behavioral difficulties, and motivation are important predictors of social-emotional adaptation. Determinants of life quality may guide resource allocation and health promotion initiatives to optimize health of the child and family.

摘要

目的

从父母和孩子的角度描述脑瘫患儿的生活质量。

研究设计

招募了95名儿童;一名家长,在可行的情况下,孩子也完成了儿童健康问卷和儿童生活质量量表。测量了一系列与损伤、活动受限、个人和环境因素相关的预测变量。

结果

平均年龄为9.3±2.1岁;63.2%为男性,近一半有轻度运动损伤(47%为粗大运动功能分级系统I级)。平均身体健康状况(儿童健康问卷)为39.6±16.9,50%<40;平均心理社会健康状况为43.0±11.3,53.8%<40。同样,在儿童生活质量量表中,61%的总得分<1个标准差。父母及其孩子的得分显著相关(身体方面:r = 0.59,P < 0.0001;心理社会方面:r = 0.39,P = 0.01);然而,孩子对自己的评价更高。

结论

结果表明,脑瘫患儿的生活质量差异很大,约一半患儿的生活质量与正常发育儿童相似。运动和其他活动受限是身体而非心理社会健康状况的指标。家庭功能、行为困难和动机是社会情感适应的重要预测因素。生活质量的决定因素可指导资源分配和健康促进举措,以优化儿童和家庭的健康。

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