PDF(Pubmed)
Abstract：
To understand the dynamics that limit use of risk-management options by women at high risk of breast cancer, there is a critical need for research that focuses on patient perspectives. Prior research has left important gaps: exclusion of high-risk women not in risk-related clinical care, exclusion of non-white populations, and lack of attention to the decision-making processes that underlie risk-management choices. Our objective was to create a more inclusive dataset to facilitate research to address disparities related to decision making for breast cancer risk management.
The Daughter Sister Mother Project survey collects comprehensive information about the experiences of women at high risk of breast cancer. We collected novel measures of feelings about and reactions to cancer screenings; knowledge, barriers, and facilitators of risk-management options; beliefs related to cancer risk and risk management; and involvement with loved ones who had cancer. Eligible individuals were non-Hispanic white and non-Hispanic Black adult women who self-identified as having high risk of breast cancer and had no personal history of cancer. Between October 2018 and August 2019, 1053 respondents completed the online survey. Of these, 717 were confirmed through risk prediction modeling to have a lifetime breast cancer risk of ≥ 20%. Sociodemographic characteristics of this sample were compared to those of nationally representative samples of the US population: the 2019 Health Information National Trends Survey and the Pew Research Center report: Jewish Americans in 2020.
The sample of 717 women at objectively high risk of breast cancer was largely (95%) recruited from non-clinical sources. Of these respondents, only 31% had seen a genetic counselor, 34% had had genetic testing specific to breast cancer risk, and 35% had seen at least one breast or cancer care specialist. The sample includes 35% Black respondents and 8% with Ashkenazi Jewish ancestry. Although encompassing a substantial range of ages, incomes, and education levels, respondents are overall somewhat younger, higher-income, and more educated than the US population as a whole.
The DSM dataset offers comprehensive data from a community-based, diverse sample of women at high risk of breast cancer. The dataset includes substantial proportions of Black and Ashkenazi Jewish women and women who are not already in clinical care related to their breast cancer risk. This sample will facilitate future studies of risk-management behaviors among women who are and are not receiving high-risk care, and of variations in risk-management experiences across race and ethnicity.
The Daughter Sister Mother Project survey collects comprehensive information about the experiences of women at high risk of breast cancer. We collected novel measures of feelings about and reactions to cancer screenings; knowledge, barriers, and facilitators of risk-management options; beliefs related to cancer risk and risk management; and involvement with loved ones who had cancer. Eligible individuals were non-Hispanic white and non-Hispanic Black adult women who self-identified as having high risk of breast cancer and had no personal history of cancer. Between October 2018 and August 2019, 1053 respondents completed the online survey. Of these, 717 were confirmed through risk prediction modeling to have a lifetime breast cancer risk of ≥ 20%. Sociodemographic characteristics of this sample were compared to those of nationally representative samples of the US population: the 2019 Health Information National Trends Survey and the Pew Research Center report: Jewish Americans in 2020.
The sample of 717 women at objectively high risk of breast cancer was largely (95%) recruited from non-clinical sources. Of these respondents, only 31% had seen a genetic counselor, 34% had had genetic testing specific to breast cancer risk, and 35% had seen at least one breast or cancer care specialist. The sample includes 35% Black respondents and 8% with Ashkenazi Jewish ancestry. Although encompassing a substantial range of ages, incomes, and education levels, respondents are overall somewhat younger, higher-income, and more educated than the US population as a whole.
The DSM dataset offers comprehensive data from a community-based, diverse sample of women at high risk of breast cancer. The dataset includes substantial proportions of Black and Ashkenazi Jewish women and women who are not already in clinical care related to their breast cancer risk. This sample will facilitate future studies of risk-management behaviors among women who are and are not receiving high-risk care, and of variations in risk-management experiences across race and ethnicity.
摘要：
背景：为了了解限制乳腺癌高危女性使用风险管理选择的动态，有一个关键的研究重点是病人的观点。先前的研究留下了重要的空白：排除了未接受风险相关临床护理的高风险女性，排除非白人人群，缺乏对风险管理选择背后的决策过程的关注。我们的目标是创建一个更具包容性的数据集，以促进研究，以解决与乳腺癌风险管理决策相关的差异。
方法：女儿姐妹母亲项目调查收集了有关乳腺癌高危女性经历的全面信息。我们收集了对癌症筛查的感受和反应的新衡量标准；知识，障碍,和促进风险管理的选择;有关癌症风险和风险管理的信念;和与亲人谁患癌症。符合条件的个体是非西班牙裔白人和非西班牙裔黑人成年女性，她们自我鉴定为患乳腺癌的风险很高，没有个人癌症史。在2018年10月至2019年8月期间，1053名受访者完成了在线调查。其中,通过风险预测模型确认了717例终生乳腺癌风险≥20%。该样本的社会人口统计学特征与美国人口的全国代表性样本进行了比较：2019年健康信息国家趋势调查和皮尤研究中心报告：2020年的犹太裔美国人。
结果：717名客观上处于乳腺癌高风险的女性样本大部分（95％）来自非临床来源。在这些受访者中,只有31%的人看过遗传咨询师，34%的人曾进行过针对乳腺癌风险的基因检测，35%的人看过至少一名乳腺癌或癌症护理专家。样本包括35％的黑人受访者和8％的阿什肯纳齐犹太血统。虽然涵盖了相当大的年龄范围，收入,和教育水平，受访者总体上有些年轻，更高的收入，而且受教育程度比整个美国人口都高。
结论：DSM数据集提供了来自社区的全面数据，乳腺癌高危女性的不同样本。该数据集包括相当比例的黑人和阿什肯纳齐犹太妇女以及尚未接受与乳腺癌风险相关的临床护理的妇女。该样本将有助于未来研究正在接受和未接受高风险护理的女性的风险管理行为，以及不同种族和族裔的风险管理经验的差异。
方法：女儿姐妹母亲项目调查收集了有关乳腺癌高危女性经历的全面信息。我们收集了对癌症筛查的感受和反应的新衡量标准；知识，障碍,和促进风险管理的选择;有关癌症风险和风险管理的信念;和与亲人谁患癌症。符合条件的个体是非西班牙裔白人和非西班牙裔黑人成年女性，她们自我鉴定为患乳腺癌的风险很高，没有个人癌症史。在2018年10月至2019年8月期间，1053名受访者完成了在线调查。其中,通过风险预测模型确认了717例终生乳腺癌风险≥20%。该样本的社会人口统计学特征与美国人口的全国代表性样本进行了比较：2019年健康信息国家趋势调查和皮尤研究中心报告：2020年的犹太裔美国人。
结果：717名客观上处于乳腺癌高风险的女性样本大部分（95％）来自非临床来源。在这些受访者中,只有31%的人看过遗传咨询师，34%的人曾进行过针对乳腺癌风险的基因检测，35%的人看过至少一名乳腺癌或癌症护理专家。样本包括35％的黑人受访者和8％的阿什肯纳齐犹太血统。虽然涵盖了相当大的年龄范围，收入,和教育水平，受访者总体上有些年轻，更高的收入，而且受教育程度比整个美国人口都高。
结论：DSM数据集提供了来自社区的全面数据，乳腺癌高危女性的不同样本。该数据集包括相当比例的黑人和阿什肯纳齐犹太妇女以及尚未接受与乳腺癌风险相关的临床护理的妇女。该样本将有助于未来研究正在接受和未接受高风险护理的女性的风险管理行为，以及不同种族和族裔的风险管理经验的差异。
