Conceptualisation and development of a quality of life measure for parents of children with autism spectrum disorder.
Conceptualisation and development of a quality of life measure for parents of children with autism spectrum disorder.
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DOI：
10.1155/2014/160783
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发表时间：
2014-01-01
影响因子：
--
通讯作者：
Tay, Kwok Ping
中科院分区：
文献类型：
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作者：
Eapen, Valsamma;Crncec, Rudi;Tay, Kwok Ping
自闭症谱系障碍 (ASD) 儿童的父母往往比正常发育儿童或其他残疾儿童的父母经历更大的心理困扰。生活质量 (QoL) 越来越被认为是自闭症谱系障碍 (ASD) 规划和治疗目的的关键结果衡量标准。需要针对 ASD 的生活质量测量，因为通用测量可能无法涵盖 ASD 生活的所有相关方面。本文描述了针对自闭症患者的 QoL 测量的概念和开发，即针对自闭症谱系障碍 (ASD) 儿童的父母和照顾者的自闭症生活质量问卷 (QoLA)，该测量适用于临床和研究环境。还介绍了该措施的初步心理测量特性（可靠性和有效性）。 QoLA 有 48 个项目，分为两个子量表：一个包含 QoL 项目，第二个是家长报告其孩子的 ASD 症状的严重程度。一项涉及 39 个家庭的研究表明，QoLA 在患有自闭症谱系障碍 (ASD) 儿童的父母与正常发育儿童的父母之间具有出色的内部一致性以及良好的已知群体效度。 QoLA 还分别与 QoL 和 ASD 症状严重程度的其他指标表现出良好的收敛效度。 QoLA 可能是一个有价值的评估工具，值得进一步的心理测量评估。
Parents of children with autism spectrum disorder (ASD) tend to experience greater psychological distress than parents of typically developing children or children with other disabilities. Quality of Life (QoL) is increasingly recognised as a critical outcome measure for planning and treatment purposes in ASD. There is a need for ASD-specific QoL measures as generic measures may not capture all relevant aspects of living with ASD. This paper describes the conceptualisation and development of an autism-specific measure of QoL, the Quality of Life in Autism Questionnaire (QoLA) for parents and caregivers of children with ASD, that is suitable to clinical and research settings. Preliminary psychometric properties (reliability and validity) of the measure are also presented. The QoLA has 48 items in two subscales: one comprising QoL items and the second a parent report of how problematic their child's ASD symptoms are. A study involving 39 families suggested the QoLA has excellent internal consistency as well as good known-groups validity between parents of children with ASD and those who were typically developing. The QoLA also showed good convergent validity with other measures of QoL and ASD symptom severity, respectively. The QoLA may be a valuable assessment tool and merits further psychometric evaluation.