Prince of Wales Clinical School, Faculty of Medicine, University of New South Wales, Sydney, NSW, 2052, Australia.
The University of Queensland Diamantina Institute, Dermatology Research Centre, The University of Queensland, Brisbane, QLD, 4102, Australia.
Fam Cancer. 2020 Oct;19(4):297-306. doi: 10.1007/s10689-020-00185-2.
It is estimated that polygenic factors can explain up to 18% of familial breast cancer. Clinical implementation of polygenic testing has begun, with several commercial laboratories now testing. Despite commercial implementation, there is little research investigating how women respond and understand polygenic risk information. This study aimed to explore women's experience receiving their personalised polygenic risk score (PRS) and compare responses of women at different levels of polygenic risk. Eligible participants were affected and unaffected women from families clinically assessed to be at high risk for breast cancer who had received their personalised PRS as part of the Variants in Practice Psychosocial Study (ViPPs). In-depth semi-structured interviews were conducted with 21 women (mean age 53.4 years) up to four weeks after receiving their PRS. Interviews were transcribed verbatim and analysed using thematic analysis. Eleven women received a PRS that was in the top quartile of PRS distribution and 10 in the lowest quartile. Women's lived experience with breast cancer informed how they responded to their PRS, constructed and made sense of breast cancer risk following receipt of their PRS, and integrated this new information into their breast cancer risk management. Regardless of polygenic risk level, all participants demonstrated broad knowledge of concepts related to polygenic information and were able to accurately describe the implications of their PRS. Receiving PRS did not appear to negatively impact women's reported distress levels. Our findings suggest polygenic breast cancer information is well received and understood by women at high-risk for breast cancer.
据估计,多基因因素可以解释高达 18%的家族性乳腺癌。多基因检测已开始临床实施,目前已有几家商业实验室进行检测。尽管已经商业化,但很少有研究调查女性如何对多基因风险信息做出反应和理解。本研究旨在探讨女性接受个性化多基因风险评分(PRS)的体验,并比较不同多基因风险水平女性的反应。合格的参与者是来自临床评估为乳腺癌高危家族的受影响和未受影响的女性,她们已经收到了个性化的 PRS,作为 Variants in Practice Psychosocial Study (ViPPs) 的一部分。在收到 PRS 后的四周内,对 21 名女性(平均年龄 53.4 岁)进行了深入的半结构化访谈。访谈逐字记录,并使用主题分析进行分析。11 名女性收到的 PRS 处于 PRS 分布的前四分之一,10 名女性收到的 PRS 处于最低四分之一。女性的乳腺癌生活经历影响了她们对 PRS 的反应,构建和理解了收到 PRS 后的乳腺癌风险,并将这一新信息纳入了她们的乳腺癌风险管理中。无论多基因风险水平如何,所有参与者都表现出对与多基因信息相关的概念的广泛了解,并且能够准确描述他们的 PRS 的含义。接受 PRS 似乎并没有对女性报告的焦虑水平产生负面影响。我们的研究结果表明,多基因乳腺癌信息受到高乳腺癌风险女性的欢迎和理解。