患者对告知亲属的看法和做法:在随机试验中对医疗保健辅助风险披露进行定性研究
Charlotta Nääs1, Jenny von Salomé1, Anna Rosén2
1Department of Diagnostics and Intervention, Oncology, Umeå University, Umeå, Sweden.
European journal of human genetics : EJHG
|February 2, 2024
概括
医疗保健专业人员的直接信件有效地向有风险的亲属 (ARR) 提供了有关癌症遗传学的信息,补充了患者的沟通. 患者接受了干预,尽管远亲的披露方法有所不同.
科学领域:
- 遗传学 遗传学 是一个
- 公共卫生 公共卫生
- 在瘤学瘤学.
背景情况:
- 关于遗传风险的家庭沟通对于预防癌症至关重要.
- 患者介导向亲属披露癌症遗传风险信息可能是不一致的.
- 医疗保健专业人员发起的沟通可以改善接触有风险的亲属.
研究的目的:
- 评估医疗保健专业人员向有风险的亲属 (ARRs) 直接信件对他们与癌症遗传学诊所的联系的影响.
- 探索患者在随机对照试验中与他们的ARRs进行风险沟通的看法和做法.
主要方法:
- 一个多中心随机对照试验 (DIRECT) 将直接信件与患者介导披露进行比较.
- 分析了使用反射主题分析对患者进行的17次半结构面试.
主要成果:
- 所有患者都接受了他们的风险亲属 (ARR) 的直接信件.
- 患者主要向亲属披露风险信息.
- 远亲的披露方法各不相同,有时是不可预测的,直接信件在某些情况下是唯一的沟通方式.
结论:
- 直接信件是患者介导披露的宝贵补充,用于告知有风险的亲属 (ARR) 癌症遗传风险.
- 患者沟通仍然是核心的,但医疗辅助方法可以确保更广泛的覆盖范围,特别是远方亲属.
- 澄清基因测试的责任和影响对于有效的全家庭风险沟通至关重要.
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