Heiniger Louise, Butow Phyllis N, Charles Margaret, Price Melanie A
Centre for Medical Psychology and Evidence-Based Decision-Making, School of Psychology, The University of Sydney, Sydney, NSW, Australia.
Psycho-Oncology Cooperative Research Group (PoCoG), The University of Sydney, Level 6 North, Chris O'Brien Lifehouse (C39Z), Sydney, NSW, 2006, Australia.
J Behav Med. 2015 Oct;38(5):727-39. doi: 10.1007/s10865-015-9632-7. Epub 2015 Mar 28.
Risk comprehension in individuals at increased familial risk of cancer is suboptimal and little is known about how risk is understood and managed by at-risk individuals who do not undergo genetic testing. We qualitatively studied these issues in 36 unaffected women from high-risk breast cancer families, including both women who had and had not undergone genetic testing. Data were collected through semi-structured interviews and data analysis was guided by Grounded Theory. Risk comprehension and risk management were largely influenced by the individual's experience of coming from a high-risk family, with both tested and untested women relying heavily on their intuition. Although women's cognitive understanding of their risk appeared generally accurate, this objective risk information was considered of secondary value. The findings could be used to guide the development and delivery of information about risk and risk management to genetically tested and untested individuals at increased risk of hereditary cancer.
癌症家族风险增加的个体对风险的理解并不理想，对于未进行基因检测的高危个体如何理解和管理风险知之甚少。我们对来自高危乳腺癌家族的36名未受影响的女性进行了定性研究，其中包括已进行和未进行基因检测的女性。通过半结构化访谈收集数据，并以扎根理论为指导进行数据分析。风险理解和风险管理在很大程度上受到个体来自高危家族经历的影响，无论是否接受检测的女性都严重依赖直觉。虽然女性对自身风险的认知理解总体上似乎是准确的，但这种客观风险信息被认为是次要价值。这些发现可用于指导为遗传性癌症风险增加的已进行和未进行基因检测的个体制定和提供有关风险及风险管理的信息。
