All in the family:: Evaluation of the process and content of sisters' communication about BRCA1 and BRCA2 genetic test results
All in the family:: Evaluation of the process and content of sisters' communication about BRCA1 and BRCA2 genetic test results
复制标题
DOI：
10.1002/ajmg.10110
复制
发表时间：
2002-01-15
期刊：
影响因子：
--
通讯作者：
Main, D
中科院分区：
文献类型：
--
作者：
Hughes, C;Lerman, C;Main, D
尽管家庭沟通具有潜在的重要性，但人们对BRCA1/2测试结果与亲属沟通的过程和内容知之甚少。这项观察性研究的目的是描述将BRCA1/2测试结果传达给姐妹的过程和内容，并评估先证者的携带者状态是否影响沟通结果。参与者是43名女性，她们是第一个接受基因测试的家庭成员(先证者)。先知们报告了81个姐妹的交流结果。在收到BRCA1/2测试结果后1个月，使用家庭沟通问卷(FCQ)对过程和内容变量进行评估。总体而言，BRCA1/2测试结果被传达给85%的姐妹，携带者将结果传达给姐妹的人数明显多于不提供信息的姐妹(96%对76%，FET=0.02)。交流结果的最重要原因是提供遗传风险信息；然而，与不提供信息的人相比，携带者将他们的结果传达给显著更多的姐妹以获得情感支持(74%)和获得关于医疗决定的建议(42%)(FET=0.001)。携带者还与更多的姐妹讨论了歧视的可能性和癌症管理的建议。在没有被告知BRCA1/2测试结果的姐妹中，不分享测试结果的最重要原因是情感上的疏远。这项研究的结果表明，先证者可能会迅速将他们的BRCA1/2测试结果传达给亲戚，尽管对社会支持的需求可能会促使家庭沟通，但情感上的疏远关系可能是与亲戚沟通的障碍。(C)2001年Wiley-Liss，Inc.
Despite the potential importance of family communication, little is known about the process and content of communicating BRCA1/2 test results to relatives. The objectives of this observational study were to describe the process and content of communicating BRCA1/2 test results to sisters, and to evaluate whether the proband's carrier status influenced communication outcomes. Participants were 43 women who were the first family member to have genetic testing (probands). Probands reported on communication outcomes for 81 sisters. Process and content variables were evaluated 1-month after receipt of BRCA1/2 test results using the Family Communication Questionnaire (FCQ). Overall, BRCA1/2 test results were communicated to 85% of sisters, and carriers communicated their results to significantly more sisters compared to uninformative (96% vs. 76%, FET = 0.02). The most important reason for communicating results was to provide genetic risk information; however, compared to uninformatives, carriers communicated their results to significantly more sisters to obtain emotional support (74%) and to get advice about medical decisions (42%) (FET = 0.001). Carriers also discussed the possibility of discrimination and recommendations for cancer management with significantly more sisters. Among sisters to whom BRCA1/2 test results were not communicated, the most important reason for not sharing test results was because of emotionally distant relationships. The results of this study suggest that probands are likely to quickly communicate their BRCA1/2 test results to relatives and that although needs for social support may motivate family communication, emotionally distant relationships may be a barrier to communication with relatives. (C) 2001 Wiley-Liss, Inc.