Division of Developmental-Behavioral Pediatrics, Floating Hospital for Children, Tufts Medical Center, #334, 800 Washington Street, Boston, MA 02111, USA.
Qual Life Res. 2012 Feb;21(1):53-7. doi: 10.1007/s11136-011-9916-5. Epub 2011 Apr 21.
To compare adolescent self-reports with two types of parent reports regarding the quality of life (QoL) of adolescents with Autism Spectrum Disorders (ASDs): (1) standard parent reports, in which parents give their own perspective on their adolescent child's QoL and (2) parent proxy reports, in which parents indicate how they believe their adolescent child would answer.
Thirty-nine adolescents with ASDs and their parents completed the Pediatric Quality of Life Inventory (PedsQL). Parents completed the form twice, once using standard parent report instructions and again using proxy instructions. Concordance among the three reports was evaluated via Pearson correlations. Differences in means were assessed via ANOVAs.
Correlations were higher between parent proxy reports and adolescent self-reports than between standard parent reports and adolescent self-reports. In addition, average scores on the parent proxy reports were closer to adolescents' self-reports than were average scores on the standard parent reports.
These results demonstrate that parents of adolescents with ASDs have different opinions about their children's quality of life than their children do, and that they are aware of these differences. If the goal is to reduce discrepancy between the reports of parents and their adolescent children with ASDs, it may be advisable to ask parents to report on their child's QoL as they believe their children would.
比较青少年自报与两种类型的家长报告，即（1）标准家长报告，其中家长对其青少年子女的生活质量（QoL）提出自己的看法；（2）家长代理报告，其中家长表示他们认为其青少年子女会如何回答，关于自闭症谱系障碍（ASD）青少年的生活质量（QoL）。
39 名 ASD 青少年及其家长完成了《儿科生活质量量表》（PedsQL）。家长两次填写表格，一次使用标准家长报告说明，另一次使用代理说明。通过皮尔逊相关评估三种报告之间的一致性。通过方差分析评估均值差异。
家长代理报告与青少年自报之间的相关性高于标准家长报告与青少年自报之间的相关性。此外，家长代理报告的平均得分比标准家长报告更接近青少年的自报得分。
这些结果表明，与青少年自己的报告相比，ASD 青少年的家长对孩子的生活质量有不同的看法，并且他们意识到这些差异。如果目标是减少 ASD 青少年家长报告与其孩子之间的差异，那么让家长按照他们认为孩子会的方式报告孩子的 QoL 可能是明智的。
