Faculty of Health and Environmental Sciences, Auckland University of Technology, Private Bag 92006, Auckland, 1142, New Zealand.
Qual Life Res. 2014 May;23(4):1069-85. doi: 10.1007/s11136-013-0591-6. Epub 2013 Dec 6.
To review the use of quality of life (QOL) measures utilised in children and youth with autism spectrum disorder (ASD).
Relevant articles were identified through database searches using MEDLINE, CINAHL Plus with Full Text and SPORTDiscus with Full Text via EBSCO Health Database, PsycINFO and ProQuest Health and Medicine (from 2000 to May 2013). Original research articles were included that measured QOL in children and youth with ASD aged 5-20 years. Searches were limited to articles from peer-reviewed journals, in English or German, and those available in full text.
The search identified 1,165 titles and 13 met the inclusion criteria. The review identified a number of QOL measures used in children and youth with ASD, with the most common one being the Pediatric Quality of Life Inventory™ (PedsQL). QOL measures using self-reports were uncommon, and the reliability and validity of QOL measures were not sufficiently reported for this population. Large discrepancies in QOL scores were found between self-reports and proxy-reports. Despite the differences in study design and methodological quality, there was consistency in the results among studies; children and youth with ASD provided lower QOL scores, particularly for social domains, compared to their healthy counterparts.
The PedsQL is likely to be an appropriate QOL measure for use in children and youth with ASD. Future research should focus on examining the appropriateness, reliability and validity of QOL self-reports for use in this population.
综述用于评估自闭症谱系障碍（ASD）儿童和青少年生活质量（QOL）的测量方法。
通过 EBSCO 健康数据库中的 MEDLINE、CINAHL Plus with Full Text 和 SPORTDiscus with Full Text、PsycINFO 和 ProQuest Health and Medicine（从 2000 年至 2013 年 5 月）进行数据库检索，确定相关文章。纳入的原始研究文章须符合以下标准：测量年龄为 5-20 岁的 ASD 儿童和青少年 QOL；研究为同行评审期刊发表的英文或德文全文文章。
搜索共确定了 1165 个标题，其中 13 个符合纳入标准。综述确定了用于 ASD 儿童和青少年的若干 QOL 测量方法，最常用的是儿科生活质量量表（PedsQL）。使用自我报告的 QOL 测量方法并不常见，而且该人群的 QOL 测量方法的信度和效度未得到充分报告。自我报告和代理报告之间的 QOL 评分存在较大差异。尽管研究设计和方法学质量存在差异，但研究结果之间具有一致性；与健康同龄人相比，ASD 儿童和青少年的 QOL 评分较低，特别是在社会领域。
PedsQL 可能是 ASD 儿童和青少年使用的合适的 QOL 测量方法。未来的研究应侧重于检验该人群中使用 QOL 自我报告的适宜性、信度和效度。
