Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome.

IF 16.4 1区化学 Q1 CHEMISTRY, MULTIDISCIPLINARY

Accounts of Chemical Research Pub Date : 2023-05-01 DOI:10.1352/1944-7558-128.3.204

Christina K Zigler, Li Lin, Molly McFatrich, Nicole Lucas, Kelly L Gordon, Harrison N Jones, Allyson Berent, Jennifer Panagoulias, Paula Evans, Bryce B Reeve

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引用次数: 1

Abstract

There is a critical need for high-quality clinical outcome assessments to capture the important aspects of communication ability of individuals with Angelman syndrome (AS). To center the perspective of caregivers, our team developed the novel Observer-Reported Communication Ability (ORCA) measure using best practice guidelines, with the goal of developing a measure that could be administered to caregivers directly without the need for a certified administrator for use in clinical trials. To refine the draft measure, we conducted two rounds of cognitive interviews with 24 caregivers and a quantitative study including 249 caregivers. The results from both studies support the overall content validity, construct validity, and the reliability of the ORCA measure for individuals with AS > 2 years old for use in research contexts. Future work should explore the responsiveness of ORCA measures to changes over time in a diverse sample.

查看原文本刊更多论文

天使综合症患者观察者报告沟通能力(ORCA)测试的验证。

迫切需要高质量的临床结果评估，以捕捉Angelman综合征(AS)患者沟通能力的重要方面。为了以护理人员的视角为中心，我们的团队使用最佳实践指南开发了新的观察者报告的沟通能力(ORCA)测量方法，其目标是开发一种可以直接管理给护理人员的测量方法，而无需经过认证的管理员即可用于临床试验。为了完善量表草案，我们对24名护理人员进行了两轮认知访谈，并对249名护理人员进行了定量研究。两项研究的结果均支持ORCA量表的整体内容效度、结构效度和信度，适用于> 2岁AS患者。未来的工作应该探索ORCA措施对不同样本随时间变化的响应性。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Accounts of Chemical Research 化学-化学综合

CiteScore

31.40

自引率

1.10%

发文量

312

审稿时长

2 months

期刊介绍： Accounts of Chemical Research presents short, concise and critical articles offering easy-to-read overviews of basic research and applications in all areas of chemistry and biochemistry. These short reviews focus on research from the author’s own laboratory and are designed to teach the reader about a research project. In addition, Accounts of Chemical Research publishes commentaries that give an informed opinion on a current research problem. Special Issues online are devoted to a single topic of unusual activity and significance. Accounts of Chemical Research replaces the traditional article abstract with an article "Conspectus." These entries synopsize the research affording the reader a closer look at the content and significance of an article. Through this provision of a more detailed description of the article contents, the Conspectus enhances the article's discoverability by search engines and the exposure for the research.