Abstract
BackgroundChemoprevention 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.MethodsThis 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.ResultsForty-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.ConclusionsLack 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.
Highlights
Chemoprevention is one of several methods that have been developed to help high-risk women reduce their risk of breast cancer
This study intentionally recruited a sample for which racial comparisons could be made within the constraints of the attainable sample size; 40% (19) of participants identified as African American and 60% (28) were non-Hispanic Whites
With fewer than half of these chemoprevention-eligible participants having heard of the chemoprevention option, this study highlights the importance of limited chemoprevention awareness as a key feature of low uptake
Summary
Chemoprevention is one of several methods that have been developed to help high-risk women reduce their risk of breast cancer. For many women at high risk of breast cancer due to family history or known genetic mutation, managing that risk is a key psychological concern. Such women face a lifetime breast cancer risk of 20–80%, and are often motivated by fear of cancer to search out ways to reduce this. Reasons for low use of chemoprevention are not yet fully understood, but prior studies have illuminated several important factors associated with low uptake of preventive medication or the rarer choice to use chemoprevention. Decision aids may increase women’s understanding of the risks and benefits of chemoprevention, but may not be consistently associated with either higher or lower uptake [15, 34, 35]
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