患者和提供者对使用GUÍA数字工具来增强基因组结果披露的患者和提供者的观点
Jacqueline A Odgis1, Sabrina A Suckiel1,2, Laura Golfinopoulos1
1Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY.
Genetics in medicine open
|October 13, 2025
概括
基因组理解,信息和意识 (GUÍA) 工具改善了对父母的基因组测试结果的沟通. 这个数字工具表现出高满意度和有效性,特别是在西班牙语家庭中,促进公平的遗传咨询.
科学领域:
- 基因组医学是基因组医学.
- 卫生沟通健康沟通
- 数字健康工具 数字健康工具
背景情况:
- 基因组测试越来越多地使用,但结果披露的差异仍然存在,特别是在多元化和双语人口中.
- 对复杂的基因组信息进行有效的沟通对于患者的理解和参与至关重要.
研究的目的:
- 评估基因组理解,信息和意识 (GUÍA) 数字工具的有效性,以向家长传达基因组测试结果.
- 评估患者和提供者对GUÍA工具的可用性和影响的观点.
主要方法:
- 一项随机研究将标准遗传咨询与GUÍA辅助披露进行了比较.
- 调查评估了家长的满意度,感知的有效性和工具使用.
- 遗传咨询师报告了可用性和临床工作流集成.
- 统计分析检查了人口统计和语言因素.
主要成果:
- 91%的家长认为GUÍA的信息"非常正确",87%非常满意.
- 91%的人表示,GUÍA在解释孩子的基因组结果方面有所帮助.
- 37%的人使用GUÍA向家人解释结果,34%的人向提供者解释结果.
- 讲西班牙语的参与者发现GUÍA更有效,解决语言障碍.
结论:
- 该GUÍA工具增强了基因组结果的沟通和患者的理解.
- 它支持公平的遗传咨询,特别是在多元化和双语人口中.
- GUÍA提供了一个可扩展的模型,以改善基因组结果的披露.
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