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.

Sequencing of Births by Wantedness: Implications for Changes in Mid-Life Health Among Aging NLSY79 Women.

OBJECTIVES: As life course frameworks highlight and gerontological studies confirm, the health implications of early birth timing (e.g., adolescent births) and unplanned births (e.g., unwanted or mistimed births) extend years after those births into mid and later life. Yet past research often overlooks the considerable diversity in sequencing and timing of unplanned births even within the same individual (e.g., having both wanted and unwanted births), which are likely fundamental for women's long-term health trajectories. We develop a holistic understanding of birth timing and wantedness to provide insight into when and how childbearing histories matter for aging women's health. METHODS: We use sequence analysis with hierarchical cluster method and estimate regression models using the 1979 National Longitudinal Survey of Youth (N = 3,231) to examine how timing and patterning of births by wantedness are associated with changes in physical and mental health from ages 40 to 50. RESULTS: We identify 7 clusters of childbearing sequences. Of those 7 clusters, respondents with sequences characterized by wanted births in their 20s and 30s had the smallest declines in health in mid-life, whereas respondents with sequences with mainly unwanted births at any age or with mainly mistimed births beginning in adolescence had the greatest health declines. Adjusting for social and economic variables accounted for some, but not all, health differences across childbearing clusters. DISCUSSION: This project demonstrates the need for comprehensive life course perspectives on long-term health implications of birth wantedness and timing, recognizing diversity within and between individuals.

Shades of health: Skin color, ethnicity, and mental health among Black Americans.

Skin color is an important predictor of health outcomes among Black Americans. Black Americans with darker complexions experience worse physical and psychological functioning than those with lighter complexions. However, most research on the health effects of colorism focuses solely on African Americans, omitting the experiences of other Black subpopulations. Using data from the National Survey of American Life (NSAL), we investigate the relationship between skin color and mental health among African Americans (N = 3393) and Caribbean Blacks (N = 1378). Findings from multivariate logistic regressions reveal that Black Americans with the lightest complexions-regardless of ethnicity-report worse psychological functioning. However, the shape of the association between skin tone and mental health varies significantly based on ethnicity and the specific psychiatric outcome under study. For Caribbean Blacks, the association between skin color and any mental disorders and mood disorders is linear, while the relationship for anxiety disorders is curvilinear. For African Americans, the relationship between skin color and mental health shows an elevated risk among only those with the lightest skin tones. These results illustrate the heterogeneity within the Black community and highlight the importance of recognizing ethnicity in health disparities research.