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

Abstract

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.

Body composition changes during breast cancer preventive treatment with anastrozole: Findings from the IBIS-II trial

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Impact of Affordable Care Act provisions on the racial makeup of patients enrolled at a Deep South, high-risk breast cancer clinic

“…Black women have a higher lifetime risk for developing breast cancer compared to White women [ 2 ]. Uptake of certain clinical preventive services has been historically low among high-risk women, and further aggravated by racial disparities [ 3 , 4 ].…”

Predicting breast cancer risk in a racially diverse, community‐based sample of potentially high‐risk women

“…Enhanced surveillance methods can substantially improve early detection of breast cancer when treatment is most effective; prophylactic surgeries and medication can reduce breast cancer risk by 40%–95% 1,4 . Yet, these options are substantially underused due to lack of systematic risk screening and support in cancer risk‐management decision‐making in the United States 3,5–7 …”

“…1,4 Yet, these options are substantially underused due to lack of systematic risk screening and support in cancer risk-management decision-making in the United States. 3,[5][6][7] Numerous breast cancer risk prediction models have been developed. 8,9 In the United States, the Gail, Claus, and IBIS (i.e., Tyrer-Cuzick) models are commonly used in research and clinical practice.…”

“… 1 , 4 Yet, these options are substantially underused due to lack of systematic risk screening and support in cancer risk‐management decision‐making in the United States. 3 , 5 , 6 , 7 …”