Mellon Suzanne, Berry-Bobovski Lisa, Gold Robin, Levin Nancy, Tainsky Michael A
University of Detroit Mercy, 4001 W. McNichols Road, MI 48221-0900, USA.
Psychooncology. 2006 Mar;15(3):193-208. doi: 10.1002/pon.935.
Dramatic advances in cancer genetics and identification of germline mutations in cancer genes such as BRCA1 and BRCA2 have led to new options in genetic risk assessment for families with histories of breast and ovarian cancer. However, little research has been carried out with individuals and their families regarding how cancer risk information is communicated within families and factors that may affect individuals and family members making informed decisions about their health. This study explored participants' knowledge of cancer risk, their perceptions and concerns regarding inherited cancer risk information, family communication patterns, and factors that may affect their decision to learn about inherited cancer risk in their families. Nine focus groups of family dyads were conducted (N=39) consisting of breast or ovarian cancer patients and close female relatives. All transcribed interviews were analyzed using qualitative software. Key findings showed diversity in how families communicated and made decisions about their health, persistent worry for their families, lack of knowledge about inherited cancer, vigilance in watching their health, and barriers present in communicating about genetic risk. Results from this study support inclusion of family members in addressing inherited cancer risk information and contextual family factors critical to consider in potentially high risk families.
癌症遗传学的显著进展以及乳腺癌1号基因（BRCA1）和乳腺癌2号基因（BRCA2）等癌症基因中种系突变的识别，为有乳腺癌和卵巢癌家族史的家庭带来了遗传风险评估的新选择。然而，关于癌症风险信息在家庭内部如何传递，以及哪些因素可能影响个人和家庭成员就自身健康做出明智决策，针对个人及其家庭所开展的研究却很少。本研究探讨了参与者对癌症风险的了解、他们对遗传性癌症风险信息的认知和担忧、家庭沟通模式，以及可能影响他们了解家族遗传性癌症风险决策的因素。研究对由乳腺癌或卵巢癌患者及其亲密女性亲属组成的9个家庭二元组焦点小组（N = 39）进行了访谈。所有访谈记录均使用定性软件进行分析。主要研究结果表明，家庭在健康沟通和决策方式上存在差异，对家人持续担忧，对遗传性癌症缺乏了解，对自身健康保持警惕，以及在传达遗传风险方面存在障碍。本研究结果支持将家庭成员纳入处理遗传性癌症风险信息的过程，并支持将家庭背景因素作为潜在高风险家庭中需要考虑的关键因素。
