Rauscher Emily A, Dean Marleah, Campbell-Salome Gemme M
Department of Communication, Texas A&M University, College Station, TX, USA.
University of South Florida, Tampa, FL, USA.
J Genet Couns. 2018 Dec;27(6):1417-1427. doi: 10.1007/s10897-018-0276-y. Epub 2018 Jul 3.
Men with a germline pathogenic BRCA1 or BRCA2 variant have increased risks for developing breast, pancreatic, prostate, and melanoma cancers, but little is known about how they understand and manage their cancer risks. This study examines how men with BRCA-related cancer risks manage uncertainty and information about their risks. Twenty-five men who were either a BRCA carrier or have a BRCA-positive first-degree family member that put the participant at 50% chance of also being a BRCA carrier were interviewed for this study. Using uncertainty management theory as a theoretical framework, this study demonstrates that men manage uncertainty by seeking information from female family members, websites, and healthcare providers, and are under-informed about their cancer risks. Further, in handling their information, men prefer information about cancer risk percentages and screening recommendations in the form of lists presented to them via websites, printed literature, proactive healthcare providers, and an identifiable male spokesperson. Finally, men used BRCA-related cancer risk information to make decisions about whether or not to engage in screening and prevention, manage their BRCA-related cancer risks, and overall family well-being-yet often at the expense of their own individual risks. Implications for genetic counseling and family conversations are discussed.
携带种系致病性BRCA1或BRCA2变异的男性患乳腺癌、胰腺癌、前列腺癌和黑色素瘤的风险增加，但对于他们如何理解和管理自身癌症风险却知之甚少。本研究探讨了有BRCA相关癌症风险的男性如何应对不确定性以及有关其风险的信息。本研究对25名男性进行了访谈，这些男性要么是BRCA携带者，要么有BRCA阳性的一级家庭成员，这使得参与者有50%的可能性也是BRCA携带者。以不确定性管理理论为理论框架，本研究表明，男性通过向女性家庭成员、网站和医疗服务提供者寻求信息来应对不确定性，并且对自身癌症风险了解不足。此外，在处理信息时，男性更喜欢以列表形式呈现给他们的有关癌症风险百分比和筛查建议的信息，这些信息通过网站、印刷文献、积极主动的医疗服务提供者以及一位可识别的男性代言人提供。最后，男性利用与BRCA相关的癌症风险信息来决定是否进行筛查和预防、管理与BRCA相关的癌症风险以及整体家庭幸福——但往往以牺牲自身个体风险为代价。文中讨论了对遗传咨询和家庭对话的启示。
