Stokes M A, Kornienko L, Scheeren A M, Koot H M, Begeer S
School of Psychology, Deakin University, 75 Pigdons Rd, Waurn Ponds, VIC, 3216, Australia.
Section Clinical Developmental Psychology, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.
Qual Life Res. 2017 Mar;26(3):611-624. doi: 10.1007/s11136-016-1490-4. Epub 2016 Dec 22.
Children and adolescents with autism spectrum disorders (ASD) are understood to experience a reduced quality of life compared to typically developing (TD) peers. The evidence to support this has largely been derived from proxy reports, in turn which have been evaluated by Cronbach's alpha and interrater reliability, neither of which demonstrate unidimensionality of scales, or that raters use the instruments consistently. To redress this, we undertook an evaluation of the Pediatric Quality of Life Inventory™ (PedsQL), a widely used measure of children's quality of life. Three questions were explored: (1). do TD children or adolescents and their parents use the PedsQL differently; (2). do children or adolescents with ASD and their parents use the PedsQL differently, and (3). do children or adolescents with ASD and TD children or adolescents use the PedsQL differently? By using the scales differently, we mean whether respondents endorse items differently contingent by group.
We recruited 229 children and adolescents with ASD who had an IQ greater than 70, and one of their parents, as well as 74 TD children or adolescents and one of their parents. Children and adolescents with ASD (aged 6-20 years) were recruited from special primary and secondary schools in the Amsterdam region. Children and adolescents were included based on an independent clinical diagnosis established prior to recruitment according to DSM-IV-TR criteria by psychiatrists and/or psychologists, qualified to make the diagnosis. Children or adolescents and parents completed their respective version of the PedsQL.
Data were analysed for unidimensionality and for differential item functioning (DIF) across respondent for TD children and adolescents and their parents, for children and adolescents with ASD and their parents, and then last, children and adolescents with ASD were compared to TD children and adolescents for DIF. Following recoding the data, the unidimensional model was found to fit all groups. We found that parents of and TD children and adolescents do not use the PedsQL differently ([Formula: see text] = 64.86, p = ns), consistent with the literature that children and adolescents with ASD and TD children and adolescents use the PedsQL similarly ([Formula: see text] = 92.22, p = ns), though their score levels may differ. However, children and adolescents with ASD and their parents respond to the PedsQL differently ([Formula: see text] = 190.22, p < 0.001) and contingently upon features of the child or adolescent.
We suggest this is due to children or adolescents with ASD being less forthcoming with their parents about their lives. This, however, will require additional research to confirm. Consequently, we conclude that parents of high-functioning children with ASD are unable to act as reliable proxies for their children with ASD.
与发育正常（TD）的同龄人相比，患有自闭症谱系障碍（ASD）的儿童和青少年的生活质量被认为较低。支持这一观点的证据主要来自他人报告，这些报告又通过克朗巴哈系数和评分者间信度进行评估，但这两者都未证明量表的单维度性，也未表明评分者是否一致使用这些工具。为了纠正这一点，我们对儿童生活质量量表（PedsQL）进行了评估，这是一种广泛使用的儿童生活质量测量工具。我们探讨了三个问题：（1）发育正常的儿童或青少年及其父母使用PedsQL的方式是否不同；（2）患有ASD的儿童或青少年及其父母使用PedsQL的方式是否不同；（3）患有ASD的儿童或青少年与发育正常的儿童或青少年使用PedsQL的方式是否不同？我们所说的使用量表方式不同，是指受访者是否因组别不同而对项目的认可不同。
我们招募了229名智商高于70的患有ASD的儿童和青少年及其一名家长，以及74名发育正常的儿童或青少年及其一名家长。患有ASD的儿童和青少年（年龄在6至20岁之间）从阿姆斯特丹地区的特殊中小学招募。根据精神科医生和/或心理学家在招募前根据《精神疾病诊断与统计手册》第四版修订版（DSM-IV-TR）标准确定的独立临床诊断纳入儿童和青少年，这些专业人员有资格进行诊断。儿童或青少年及其父母完成了各自版本的PedsQL。
对数据进行了单维度分析以及发育正常的儿童和青少年及其父母、患有ASD的儿童和青少年及其父母之间受访者的项目功能差异（DIF）分析，最后，对患有ASD的儿童和青少年与发育正常的儿童和青少年之间的DIF进行了比较。对数据重新编码后，发现单维度模型适用于所有组。我们发现发育正常的儿童和青少年的父母使用PedsQL的方式没有差异（[公式：见正文]=64.86，p=无显著差异），这与文献一致，即患有ASD的儿童和青少年与发育正常的儿童和青少年使用PedsQL的方式相似（[公式：见正文]=92.22，p=无显著差异），尽管他们的得分水平可能不同。然而，患有ASD的儿童和青少年及其父母对PedsQL的反应不同（[公式：见正文]=190.22，p<0.001），且因儿童或青少年的特征而异。
我们认为这是由于患有ASD的儿童或青少年与其父母交流生活情况时不够坦诚。然而，这需要更多研究来证实。因此，我们得出结论，高功能ASD儿童的父母不能可靠地代表他们患有ASD的孩子。
