Department of Pediatrics, Fallon Clinic, 630 Plantation Street, Worcester, MA 01605, USA.
J Dev Behav Pediatr. 2011 Feb-Mar;32(2):85-9. doi: 10.1097/DBP.0b013e318203e558.
This study examined the reliability and validity of self-reported quality of life (QoL) among adolescents with autism spectrum disorders (ASDs) but without mental retardation (IQ >70) using a validated QoL measure, Pediatric Quality of Life Inventory. Secondarily, the self-reported QoL of adolescents with ASDs was compared with published normative data.
Thirty-nine adolescents with ASDs and their parents completed a QoL instrument and brief measures of psychosocial distress and self-esteem. A screening test of cognitive abilities was administered to adolescents; parents completed an assessment of behavioral and emotional symptoms and an assessment of the presence and extent of autistic social impairments.
Adolescent self-reports of QoL demonstrated internal reliability and concurrent validity. Self-reports on the Pediatric Quality of Life Inventory demonstrated moderate to large positive correlations with a measure of self-esteem and moderate to large negative correlations with measures of anxiety and mood. Concurrent validity with parent proxy reports fell within the range of expected values based on past studies of inter-rater reliability for QoL, with parents of adolescents reporting lower QoL when compared with adolescent reports. Adolescents reported QoL below the population mean for all domains.
Results of this study provide preliminary evidence that adolescents with ASDs are able to report on their own QoL in a valid and reliable manner. Based on our findings, the measurement of QoL may be useful for clinical care and research about adolescents with ASDs.
本研究使用经过验证的生活质量（QoL）量表——儿科生活质量量表（PedsQL），检验了无智力障碍（智商＞70）的自闭症谱系障碍（ASD）青少年自我报告的生活质量（QoL）的可靠性和有效性。其次，将 ASD 青少年的自我报告 QoL 与已发表的规范数据进行了比较。
39 名 ASD 青少年及其父母完成了一项 QoL 工具以及心理社会困扰和自尊的简短测量。对青少年进行了认知能力筛查测试；父母完成了行为和情绪症状评估以及自闭症社交障碍的存在和程度评估。
青少年自我报告的 QoL 具有内部可靠性和同时效度。儿科生活质量量表上的自我报告与自尊的测量呈中度至高度正相关，与焦虑和情绪的测量呈中度至高度负相关。与父母代理报告的同时效度在过去关于 QoL 的评分者间信度研究的预期值范围内，与青少年报告相比，父母报告的 QoL 较低。青少年在所有领域的报告 QoL 均低于人群平均值。
本研究的结果初步证明了 ASD 青少年能够以有效且可靠的方式报告自己的 QoL。基于我们的发现，QoL 的测量可能对 ASD 青少年的临床护理和研究有用。
