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使用 PROMIS 全球 10 项量表测量自闭症成人的主观生活质量:心理测量学研究和自闭症特定评分方法的制定。

Measuring subjective quality of life in autistic adults with the PROMIS global-10: Psychometric study and development of an autism-specific scoring method.

机构信息

Vanderbilt University School of Medicine, USA.

Vanderbilt University Medical Center, USA.

出版信息

Autism. 2023 Jan;27(1):145-157. doi: 10.1177/13623613221085364. Epub 2022 Apr 11.

Abstract

Quality of Life an outcome that both researchers and autistic advocates agree is extremely important to consider when implementing services, interventions, and supports for autistic people. However, there has been little research on the topic of how quality of life can best be measured in autistic people or whether existing quality of life questionnaires are appropriate for use in the autistic population. This study aimed to validate an established quality of life measure, the Patient-Reported Outcomes Measurement Information System Global-10, in a large sample of autistic adults recruited online. We created a new way to score the Patient-Reported Outcomes Measurement Information System Global-10 scale and generate a "General quality of life" score specific to autistic adults. This new score performed very well in this sample, showing very little measurement error and relating in expected ways to similar constructs, such as physical health and emotional distress. Exploratory analyses found that lower quality of life was associated with female sex and self-identification as a sexual or gender minority (i.e. LGBTQ + identity). These findings suggest that the new Patient-Reported Outcomes Measurement Information System Global-10 quality of life score is a reliable and valid measure of quality of life in autistic adults, although additional studies are necessary to further explore its measurement properties in other subsets of the autistic population, such as individuals with intellectual disabilities. This measure is freely available for use as an outcome in both research and clinical practice, and an online score calculator is available to support the use of this measure in real-world applications.

摘要

生活质量是研究人员和自闭症倡导者都同意的一个极其重要的结果,在为自闭症患者实施服务、干预和支持时应予以考虑。然而,关于如何最好地衡量自闭症患者的生活质量,以及现有的生活质量问卷是否适合自闭症人群使用,这方面的研究很少。本研究旨在通过在线招募的大量自闭症成年人样本,验证一种已确立的生活质量衡量标准,即患者报告的结果测量信息系统全球 10 项量表。我们创建了一种新的方法来给患者报告的结果测量信息系统全球 10 项量表评分,并为自闭症成年人生成一个特定的“总体生活质量”评分。在这个样本中,这个新的评分表现非常出色,显示出很少的测量误差,并以预期的方式与类似的结构相关联,如身体健康和情绪困扰。探索性分析发现,生活质量较低与女性性别和自我认同为性少数群体或性别少数群体(即 LGBTQ+身份)有关。这些发现表明,新的患者报告的结果测量信息系统全球 10 项生活质量评分是衡量自闭症成年人生活质量的可靠和有效的工具,尽管还需要进一步的研究来探索其在自闭症人群的其他亚组中的测量特性,如智障人士。该衡量标准可免费用于研究和临床实践中的结果评估,并且提供了在线评分计算器以支持在实际应用中使用该衡量标准。

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