在基因咨询和检测BRCA1/2和林奇综合征后,信息需求仍然存在
Lucy A Peipins1,2, Sabitha Dasari3, Melissa Heim Viox4
1Epidemiology and Applied Research Branch, Division of Cancer Prevention and Control, Centers for Disease Control and Prevention, Atlanta, GA, USA. lbp6@cdc.gov.
接受基因检测的患者往往不了解他们的癌症遗传风险. 供应商资源和教育材料不足导致未得到满足的信息需求,影响家庭沟通.
科学领域:
- 遗传学 是一个遗传学.
- 在瘤学瘤学.
- 卫生沟通健康沟通
背景情况:
- 癌症遗传风险经常被患者误解.
- 接受基因检测和咨询的患者在理解自己的风险方面面临挑战.
- 了解遗传风险对高风险个人和癌症幸存者至关重要.
研究的目的:
- 确定了解癌症遗传风险的障碍.
- 描述那些经过癌症风险基因检测的人的信息需求.
- 评估与充分理解家族沟通遗传风险相关的因素.
主要方法:
- 一项针对696名美国成年人进行的互联网调查,这些成年人接受了癌症遗传检测.
- 双变量和多变量逻辑回归分析.
- 评估未满足的信息需求,患者对咨询的满意度,以及家庭对遗传风险状况的披露.
主要成果:
- 提供者资源和教育材料的缺乏与对癌症遗传风险的理解不足密切相关.
- 近一半的参与者需要更多关于遗传风险对自己和家人的影响的信息.
- 了解遗传风险会影响未来的查和家庭沟通.
结论:
- 患者对遗传咨询的满意度可能会掩盖未满足的信息需求.
- 可访问的资源和不断更新家族史的机会是必不可少的.
- 加强对遗传风险的知识可以改善患者和家庭的治疗结果.
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