"我不必担心":患者和家人的经验与卫生系统参与通知亲属遗传检测结果的参与
Paula Rae Blasi1, Jamilyn M Zepp2, Aaron Scrol1
1Kaiser Permanente Washington Health Research Institute, Seattle, Washington, USA.
Public health genomics
|September 30, 2024
概括
一个卫生系统计划有效地通知有风险的亲属关于遗传性癌症遗传检测结果. 这种方法对参与者来说是可以接受的,并减少了试验对象的负担,改善了家庭沟通和癌症风险意识.
科学领域:
- 遗传学 遗传学 是一个
- 公共卫生 公共卫生
- 预防癌症 预防癌症
背景情况:
- 在美国,接受遗传性癌症风险基因测试的个人有责任通知亲属.
- 由于直接通知的挑战,许多处于危险状态的亲属仍然不知道他们潜在的遗传倾向.
- 通过卫生系统介绍的相对通知计划提供了一个潜在的解决方案,可以弥合这一信息差距.
研究的目的:
- 评估患者和家庭对新型卫生系统中介相对通知计划的接受度和经验.
- 了解与旨在告知有风险的亲属遗传检测结果的计划相关的好处和挑战.
主要方法:
- 通过半结构化的电话采访收集了定性数据,对32名参与者进行了采访 (17名受试者,15名亲属).
- 采用混合方法方法,在遗传测试结果返回6-8周后分析数据.
- 使用模板方法进行了主题分析,以确定参与者体验中的关键主题.
主要成果:
- 亲属报告了积极的经历,感觉自己有控制权,并赞赏遗传咨询师的参与.
- 该计划促进了直接接触,减少了检查负担,增加了家庭健康讨论.
- 通知到达了亲属,否则他们不会知道他们的风险;没有报告的不良影响.
结论:
- 通过卫生系统介导的相对通知计划在参与者中表现出高度的接受度.
- 该计划成功地支持试验人员通知有风险的亲属,这可能会提高连锁测试的普及率.
- 这些发现支持实施此类计划,以加强癌症预防和早期检测工作.
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