Department of Bioethics and Humanities, University of Washington, Seattle, USA.
Department of Behavioral Science, UT MD Anderson Cancer Center, Houston, USA.
Patient Educ Couns. 2021 Apr;104(4):726-731. doi: 10.1016/j.pec.2021.01.001. Epub 2021 Jan 7.
We currently rely on probands to communicate genetic testing results and health risks within a family to stimulate preventive behaviors, such as cascade testing. Rates of guidelines-based cascade testing are low, possibly due to low frequency or non-urgent communication of risk among family members. Understanding what is being communicated and why may help improve interventions that increase communication and rates of cascade testing.
Participants (n = 189) who were to receive both positive and negative colorectal cancer (CRC) sequencing results completed surveys on family communication, family functioning, impact of cancer in the family, and future communication of risk and were participants in eMERGE3. Questions were taken from existing surveys and administered electronically using email and a web driven tool.
Common family member targets of CRC risk communication, before results were received, were mothers and fathers, then sisters and grandchildren and finally, children and brothers. A communication impact score of 0.66 (sd = 0.83) indicated low-to-moderate communication impact. Age and education were significantly associated with frequency of familial communication, but not on the cancer-related impact of familial communication.
There is infrequent communication about cancer risk from probands to family members.
These results demonstrate an opportunity to help families improve communication.
我们目前依赖于先证者来在家庭内传达基因检测结果和健康风险，以刺激预防措施，如级联检测。基于指南的级联检测率较低，可能是由于家庭成员之间的风险沟通频率较低或不紧急。了解正在沟通的内容和原因可能有助于改进沟通和提高级联检测率的干预措施。
将收到结直肠癌（CRC）测序阳性和阴性结果的参与者（n=189）完成了关于家庭沟通、家庭功能、癌症对家庭的影响以及未来风险沟通的调查，他们均为 eMERGE3 的参与者。问题取自现有的调查，并通过电子邮件和网络驱动工具进行电子管理。
在收到结果之前，CRC 风险沟通的常见家庭成员目标是母亲和父亲，然后是姐妹和孙子孙女，最后是孩子和兄弟。沟通影响得分为 0.66（标准差=0.83），表明沟通影响低至中度。年龄和教育与家庭沟通的频率显著相关，但与家庭沟通的癌症相关影响无关。
先证者与家庭成员之间很少有关于癌症风险的沟通。
这些结果表明有机会帮助家庭改善沟通。
