Risk-management decision-making data from a community-based sample of racially diverse women at high risk of breast cancer: rationale, methods, and sample characteristics of the Daughter Sister Mother Project survey.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Racial differences in prevention decision making among U.S. women at high risk of breast cancer: A qualitative study.

PURPOSE: Women at high risk of breast cancer face complex decisions about how to manage those risks. Substantial gaps in current knowledge include how women make these decisions and how decision making may differ across sub-populations. Among these critical gaps are the questions of (a) whether racial differences exist between the experiences of high-risk women navigating breast cancer risk, and (b) what consequences those racial differences might have on women's ability to manage their cancer risks. The present study is designed to address these questions directly. METHODS: Fifty semi-structured interviews were conducted with high-risk Black (n = 20) and white women (n = 30) between May 2015 and March 2016 in person in Ohio and by phone. Transcribed data were analyzed using grounded theory methods. MAIN FINDINGS: Our analyses suggest that many of the core decision-making dynamics high-risk women navigate differ by race. The experiences of white and Black women in our study differ in terms of (a) contextualizing risk-how women make sense of their own breast cancer risk, the degree to which they worry about risk, and how they prioritize risk within the contexts of their broader lives; (b) conceptualizing risk management-how, how much, and from whom women learn about and conceptualize their options for preventing cancer and/or ensuring that cancer gets diagnosed early; and (c) constraints-the external barriers women face throughout their decision-making and risk-management processes. In sum, the Black women we interviewed reported feeling less well-situated to consider and cope actively with breast cancer risk, less well-informed about risk-management options, and more constrained in their use of these options. CONCLUSIONS: High-risk women's accounts of the complex dynamics that shape breast cancer prevention decisions suggest that these dynamics vary substantially by race, such that Black women may experience disadvantages relative to whites.

Understanding low chemoprevention uptake by women at high risk of breast cancer: findings from a qualitative inductive study of women's risk-reduction experiences.

BACKGROUND: Chemoprevention is one of several methods that have been developed to help high-risk women reduce their risk of breast cancer. Reasons for the low uptake of chemoprevention are poorly understood. This paper seeks a deeper understanding of this phenomenon by drawing on women's own narratives about their awareness of chemoprevention and their risk-related experiences. METHODS: This research is based on a parent project that included fifty in-depth, semi-structured interviews with a purposive sample of African American and White women at elevated risk of breast cancer. This specific study draws on the forty-seven interviews conducted with women at high or severe risk of breast cancer, all of whom are eligible to use chemoprevention for breast cancer risk-reduction. Interviews were analyzed using grounded theory methods. RESULTS: Forty-five percent of participants, and only 21% of African American participants, were aware of chemoprevention options. Women who had seen specialists were more likely to be aware, particularly if they had ongoing specialist access. Aware and unaware women relied on different types of sources for prevention-related information. Those whose main source of information was a healthcare provider were more likely to know about chemoprevention. Aware women used more nuanced information gathering strategies and worried more about cancer. Women simultaneously considered all risk-reduction options they knew about. Those who knew about chemoprevention but were reluctant to use it felt this way for multiple reasons, having to do with potential side effects, perceived extreme-ness of the intervention, similarity to chemotherapy, unknown information about chemoprevention, and reluctance to take medications in general. CONCLUSIONS: Lack of chemoprevention awareness is a critical gap in women's ability to make health-protective choices. Future research in this field must consider complexities in both women's perspectives on chemoprevention and the reasons they are reluctant to use it.

Layers of information: interacting constraints on breast cancer risk-management by high-risk African American women.

Objectives: To understand how various decision-making dynamics interact to shape the risk-management choices of African American women at high-risk of breast cancer, and to explore whether African American and White women have differential access to the information and interactions that promote proactive, confident risk-management behavior.Design: This paper draws on 50 original in-depth, semi-structured interviews with African American and White women at elevated risk of breast cancer. We used inductive grounded-theory methodology to explore the processes by which women make risk-management decisions and to compare those processes between racial groups. Moving backward from women's decisions about whether or not to engage in specific risk-management behaviors, we explored the patterns that underlie behavioral decisions.Results: We find that decisions to engage in risk-management behavior rest on three accumulated layers of information. The layer most proximal to making risk-management decisions involves specific information about risk-management options; the middle layer involves general information about managing breast cancer risk; and the foundational layer involves personal perceptions of breast cancer risk and prevention. African American and White women experience distinct dynamics at each of these levels, and these differences may help explain racial differences in risk-management behavior. Compared to their White counterparts, African American women faced additional burdens at every step along the risk-management journey.Conclusion: These findings suggest that information gathering is more complex than has previously been addressed, that information access and provider access are closely related, and that African American women may be systematically disadvantaged with respect to information-generating experiences. Preventing cancer morbidity and mortality requires that all high-risk women have access to the layers of information necessary to engage in cancer screenings and preventive interventions. These results exemplify the ways that structural, social, and interpersonal inequalities combine to influence risk-management choices.