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自闭症成年人及其他智力和发育障碍成年人的关系、就业、自主性和生活满意度(REALS)量表:自我报告版和代理版的心理测量测试

The Relationships, Employment, Autonomy, and Life Satisfaction (REALS) Measures for Autistic Adults and Adults With Other Intellectual and Developmental Disabilities: Psychometric Testing of the Self-Report and Proxy Versions.

作者信息

Conner Caitlin M, Yu Lan, MacKenzie Kristen T, Zeglen Katharine N, Rutenberg Elizabeth L, Pilkonis Paul A, Eack Shaun M, Mazefsky Carla A

机构信息

Department of Psychiatry, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA.

Center for Research on Health Care, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA.

出版信息

Autism Res. 2025 Mar;18(3):583-603. doi: 10.1002/aur.70002. Epub 2025 Feb 12.

Abstract

Research and clinical work demonstrate that adults with intellectual and developmental disabilities (IDDs; including autistic adults and adults with other IDDs) struggle with key outcomes in adult life, including social relationships, employment, autonomy, and life satisfaction. However, few validated measures exist to measure these outcomes in adults with IDDs. The Relationships, Employment, Autonomy, and Life Satisfaction (REALS) Measures were created using methods developed by the Patient-Reported Outcomes Measurement Information System (PROMIS) to assess these outcomes. Large item pools were generated for the four domains, and, in field testing, 875 adults with IDDs (90% autistic; 18.4% with intellectual disability or a non-autism IDD) and 911 proxy reporters (caregivers; 79% autistic; 48.3% with intellectual disability or a non-autism IDD) completed 108 and 74 items, respectively, using response options capturing frequency, level of support needed, and satisfaction. The structure and item content of the REALS Measures were determined through an iterative process using both classical test theory and item response theory analyses. The final versions include 19 self-report and 14 proxy-report measures, with a range of 3 to 14 items each. The measures have excellent psychometric properties, high precision, and acceptable respondent burden. Thus, they are applicable for service provision, clinical, and research arenas for autistic adults and adults with other IDDs, though additional testing in IDD is warranted and evidence supporting self-report use in IDD is more limited.

摘要

研究和临床工作表明,患有智力和发育障碍(IDD;包括自闭症成年人和患有其他IDD的成年人)的成年人在成年生活的关键方面存在困难,包括社会关系、就业、自主性和生活满意度。然而,几乎没有经过验证的措施来衡量IDD成年人的这些方面。关系、就业、自主性和生活满意度(REALS)测量工具是使用患者报告结局测量信息系统(PROMIS)开发的方法创建的,用于评估这些方面。针对这四个领域生成了大量的项目池,在现场测试中,875名IDD成年人(90%为自闭症患者;18.4%为智力残疾或非自闭症IDD患者)和911名代理报告者(照顾者;79%为自闭症患者;48.3%为智力残疾或非自闭症IDD患者)分别完成了108项和74项,使用了捕捉频率、所需支持水平和满意度的回答选项。REALS测量工具的结构和项目内容是通过使用经典测试理论和项目反应理论分析的迭代过程确定的。最终版本包括19项自我报告和14项代理报告测量工具,每项的项目数量在3到14项之间。这些测量工具具有出色的心理测量特性、高精度和可接受的受访者负担。因此,它们适用于自闭症成年人和患有其他IDD的成年人的服务提供、临床和研究领域,不过在IDD中进行额外测试是必要的,并且支持在IDD中使用自我报告的证据更为有限。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7a07/11928910/02553dc8406e/AUR-18-583-g003.jpg

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