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Assessing general and autism-relevant quality of life in autistic adults: A psychometric investigation using item response theory
Autism Research ( IF 5.3 ) Pub Date : 2021-04-19 , DOI: 10.1002/aur.2519
Zachary J Williams 1, 2, 3, 4 , Katherine O Gotham 5
Affiliation  

Although many interventions and services for autistic people have the ultimate goal of improving quality of life (QoL), there is relatively little research on how best to assess this construct in the autistic population, and existing scales designed for non-autistic individuals may not assess all meaningful facets of QoL in the autistic population. To address this need, the autism spectrum QoL form (ASQoL) was recently developed as a measure of the autism-relevant quality of life. However, the psychometrics of the ASQoL have not been examined beyond the authors' initial validation study, and important properties such as measurement invariance/differential item functioning (DIF) have not yet been tested. Using data from 700 autistic adults recruited from the Simons Foundation's SPARK cohort, the current study sought to perform a comprehensive independent psychometric evaluation of the ASQoL using item response theory, comparing its performance to a newly-proposed brief measure of general QoL (the WHOQOL-4). Our models revealed substantial DIF by sex and gender in the ASQoL, which caused ASQoL scores to grossly underestimate the self-reported QoL of autistic women. Based on a comparison of latent variable means, we demonstrated that observed sex/gender differences in manifest ASQoL scores were the result of statistical artifacts, a claim that was further supported by the lack of significant group differences on the sex/gender-invariant WHOQOL-4. Our findings indicate that the ASQoL composite score is psychometrically problematic in its current form, and substantial revisions may be necessary before valid and meaningful inferences can be made regarding autism-relevant aspects of QoL.

中文翻译:


评估自闭症成人的一般生活质量和与自闭症相关的生活质量:使用项目反应理论的心理测量调查



尽管针对自闭症患者的许多干预措施和服务的最终目标是提高生活质量 (QoL),但关于如何最好地评估自闭症人群中的这种结构的研究相对较少,而且为非自闭症患者设计的现有量表可能无法评估自闭症人群生活质量的所有有意义的方面。为了满足这一需求,最近开发了自闭症谱系生活质量表 (ASQoL),作为自闭症相关生活质量的衡量标准。然而,除了作者的初步验证研究之外,ASQoL 的心理测量学尚未得到检验,并且诸如测量不变性/差异项目功能 (DIF) 等重要属性尚未得到测试。本研究使用从西蒙斯基金会 SPARK 队列中招募的 700 名自闭症成年人的数据,试图利用项目反应理论对 ASQoL 进行全面的独立心理测量评估,将其表现与新提出的一般生活质量的简要衡量标准(WHOQOL- 4).我们的模型显示,ASQoL 中的性别和性别存在显着的差异,这导致 ASQoL 分数严重低估了自闭症女性自我报告的生活质量。基于潜在变量均值的比较,我们证明了明显 ASQoL 评分中观察到的性别/性别差异是统计假象的结果,这一说法得到了性别/性别不变 WHOQOL 缺乏显着群体差异的进一步支持。 4.我们的研究结果表明,ASQoL 综合评分目前的形式在心理测量上存在问题,在对生活质量的自闭症相关方面做出有效且有意义的推论之前,可能需要进行大量修改。
更新日期:2021-04-19
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