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脑瘫青少年的生活质量:文献告诉了我们什么?

Quality of life among adolescents with cerebral palsy: what does the literature tell us?

作者信息

Livingston Michael H, Rosenbaum Peter L, Russell Dianne J, Palisano Robert J

机构信息

School of Rehabilitation Science, McMaster University, Hamilton, Ontario, Canada.

出版信息

Dev Med Child Neurol. 2007 Mar;49(3):225-31. doi: 10.1111/j.1469-8749.2007.00225.x.

DOI:10.1111/j.1469-8749.2007.00225.x
PMID:17355481
Abstract

This review describes trends in quality of life (QOL) and health-related quality of life (HRQOL) among adolescents with cerebral palsy (CP). Twenty original articles were identified by a structured search of multiple databases and grouped by design. Categories included descriptive cross-sectional studies (n=8), measurement validation studies (n=9), and exploratory qualitative studies (n=3). Several trends were apparent. First, individuals with CP are reported to have decreased QOL and HRQOL compared with a normative population in some but not all areas of well-being. Second, functional status measures such as the Gross Motor Function Classification System are reliable indicators of variations in physical function, but do not correlate consistently with psychosocial well-being. Third, although adolescents with CP have different life issues than adults or children, limited research on factors associated with QOL and HRQOL has been described for this age range. We recommend that clinicians and researchers interested in assessing well-being among adolescents with CP include participants from across the spectrum of motor impairment, allow adolescents to self-report whenever possible, and assess adolescents independently, rather than including them with individuals from other age groups or clinical populations.

摘要

本综述描述了脑性瘫痪(CP)青少年的生活质量(QOL)和健康相关生活质量(HRQOL)的趋势。通过对多个数据库进行结构化检索,确定了20篇原创文章,并按设计进行分组。类别包括描述性横断面研究(n = 8)、测量验证研究(n = 9)和探索性定性研究(n = 3)。有几个趋势很明显。首先,据报道,与正常人群相比,CP患者在某些但并非所有幸福领域的QOL和HRQOL有所下降。其次,诸如粗大运动功能分类系统等功能状态测量是身体功能变化的可靠指标,但与心理社会幸福感并不始终相关。第三,尽管CP青少年与成年人或儿童有不同的生活问题,但针对该年龄范围的与QOL和HRQOL相关因素的研究有限。我们建议,对评估CP青少年幸福感感兴趣的临床医生和研究人员纳入运动障碍谱各阶段的参与者,尽可能让青少年自我报告,并独立评估青少年,而不是将他们与其他年龄组或临床人群的个体纳入在一起。

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