Abstract A47: Racial and socioeconomic differences in control over breast cancer prevention decisions among women at elevated risk
Authors: Padamsee Tasleem J. , Wills Celia , Paskett Electra 
Published: May 2016

Introduction: Currently, few high-risk women utilize biomedical methods that have been designed to prevent breast cancer, and there is a considerable mismatch between who chooses to use these methods and the research-based indications for clinical use. This research seeks to shed light on the reasons for these trends by understanding women's decision-making processes from their own perspectives. Specifically, this in-depth qualitative study aims to identify key challenges faced by women at elevated risk of breast cancer during the process of making decisions about whether they will undergo prophylactic mastectomies, prophylactic oophorectomies, chemoprevention, enhanced surveillance, and/or participate in other prevention activities.

Methods: Semi-structured interviews are being conducted with African American and non-Hispanic White women at elevated risk of breast cancer. Eight pilot interviews were conducted in the Spring of 2015, and preliminary results based on these interviews are summarized below. Interviews are ongoing, and the presentation will draw on data from a larger set of thirty women, half African American and half White. Allowing women to speak in their own words, these interviews explore women's understanding of their risk status; the sources and content of risk information they have obtained; their understanding and consideration of prevention options; decision-making processes; decision-making networks, psychosocial well-being; and women's use of financial, time, and energy resources in coping with risk and prevention. Pilot interviews have ranged in length from 48 to 140 minutes and were professionally transcribed. Transcribed data are being analyzed through grounded theory methods, using the NVivo 10 software package for qualitative data.

Results: Analysis of pilot data suggests that the desire to take control of one's health plays a significant role in women's decision-making processes. Almost all interviewees are strongly motivated to take control of their breast cancer risk in one way or another, often through substantial information gathering efforts, seeking support for prevention decision making, and actively choosing specific and definitive preventive actions. Taking control in these ways helps women keep risk-related anxiety at bay, and produces positive feelings about their health. Women also commonly experience challenges to their attempts to take control of breast cancer risk, in forms such as physician resistance or spousal opposition to certain courses of preventive action, or lack of insurance coverage for specific interventions. These difficulties are more common among African American and low-income women, who are more likely to lack insurance coverage for a test or procedure; less likely to be able to pursue their chosen prevention activities without insurance coverage; and more likely to encounter physician resistance to their efforts to take control and their prevention choices.

Conclusions: Women's efforts to take control of their cancer risk deserve careful attention; they represent a common facet of the decision-making experience that has been almost entirely omitted from the literature on breast cancer prevention among women at elevated risk. Pending confirmation, these findings suggest that supporting women's ability to act on their desire for control (for example, by educating relevant physician communities and influencing policy changes among insurance carriers) may be a critical route to improving women's prevention decision making. Importantly, these types of interventions may be particularly effective for low-income and African American women. Enhancing women's ability to actively control prevention decisions and courses of action may ultimately have important positive effects on their long-term physical and psychosocial outcomes.

Citation Format: Tasleem J. Padamsee, Celia Wills, Electra Paskett. Racial and socioeconomic differences in control over breast cancer prevention decisions among women at elevated risk. [abstract]. In: Proceedings of the Eighth AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 13-16, 2015; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2016;25(3 Suppl):Abstract nr A47.