Why Breast Cancer Risk by the Numbers Is Not Enough: Evaluation of a Decision Aid in Multi-Ethnic, Low-Numerate Women

Abstract

BackgroundBreast cancer risk assessment including genetic testing can be used to classify people into different risk groups with screening and preventive interventions tailored to the needs of each group, yet the implementation of risk-stratified breast cancer prevention in primary care settings is complex.ObjectiveTo address barriers to breast cancer risk assessment, risk communication, and prevention strategies in primary care settings, we developed a Web-based decision aid, RealRisks, that aims to improve preference-based decision-making for breast cancer prevention, particularly in low-numerate women.MethodsRealRisks incorporates experience-based dynamic interfaces to communicate risk aimed at reducing inaccurate risk perceptions, with modules on breast cancer risk, genetic testing, and chemoprevention that are tailored. To begin, participants learn about risk by interacting with two games of experience-based risk interfaces, demonstrating average 5-year and lifetime breast cancer risk. We conducted four focus groups in English-speaking women (age ≥18 years), a questionnaire completed before and after interacting with the decision aid, and a semistructured group discussion. We employed a mixed-methods approach to assess accuracy of perceived breast cancer risk and acceptability of RealRisks. The qualitative analysis of the semistructured discussions assessed understanding of risk, risk models, and risk appropriate prevention strategies.ResultsAmong 34 participants, mean age was 53.4 years, 62% (21/34) were Hispanic, and 41% (14/34) demonstrated low numeracy. According to the Gail breast cancer risk assessment tool (BCRAT), the mean 5-year and lifetime breast cancer risk were 1.11% (SD 0.77) and 7.46% (SD 2.87), respectively. After interacting with RealRisks, the difference in perceived and estimated breast cancer risk according to BCRAT improved for 5-year risk (P=.008). In the qualitative analysis, we identified potential barriers to adopting risk-appropriate breast cancer prevention strategies, including uncertainty about breast cancer risk and risk models, distrust toward the health care system, and perception that risk assessment to pre-screen women for eligibility for genetic testing may be viewed as rationing access to care.ConclusionsIn a multi-ethnic population, we demonstrated a significant improvement in accuracy of perceived breast cancer risk after exposure to RealRisks. However, we identified potential barriers that suggest that accurate risk perceptions will not suffice as the sole basis to support informed decision making and the acceptance of risk-appropriate prevention strategies. Findings will inform the iterative design of the RealRisks decision aid.

Evaluation of National Comprehensive Cancer Network guideline‐based Tool for Risk Assessment for breast and ovarian Cancer (N‐TRAC): A patient‐reported survey for genetic high‐risk assessment for breast and ovarian cancers in women

“…Utilization of genetic tests has increased in recent years (McCarthy & Armstrong, 2014), outpacing the implementation of clinically based risk assessment methods to accurately identify patients who would most benefit from genetic testing (Nelson et al, 2014). The lack of clinically engrained screening practices leads to underutilization of genetic testing in potentially high-risk populations (Bellcross, Leadbetter, Alford, & Peipins, 2013;Kukafka et al, 2015;Kurian et al, 2017;Rosenbaum, 2014). In addition, there is concern that low-and average-risk patients may seek expensive testing, which may or may not be covered by insurance, and may provide little benefit to their health (McCarthy & Armstrong, 2014).…”

A System-Level Approach to Improve the Uptake of Antiestrogen Preventive Therapy among Women with Atypical Hyperplasia and Lobular Cancer In Situ

“…The most commonly cited reasons by patients for declining preventive therapy are fear of side effects, including endometrial cancer, thromboembolic disease, and menopausal symptoms (22,23,28). Indeed, we found that concern about side effects was the primary reason for declining preventive therapy in addition to other previously reported barriers such as having an aversion to additional medications (29) and risk of breast cancer not perceived to be sufficiently high (30). The longer the time from diagnosis of AH/LCIS to enrollment in the program, the less likely women were to accept or be adherent with preventive therapy supporting prior findings that perceptions of personal risk and breast cancer-related anxiety evolve over time and can affect decision making and treatment satisfaction (31)(32)(33).…”

Study protocol: a cluster randomized controlled trial of web-based decision support tools for increasing BRCA1/2 genetic counseling referral in primary care

“…The study goal is to expand genetic testing for HBOC to a broader population of high-risk women by prompting appropriate referrals from the primary care setting with the use of an electronic health record-embedded breast cancer risk navigation ( BNAV ) tool [ 40 , 41 ]. To address patient-related barriers to genetic testing, we developed a web-based decision aid, RealRisks , [ 42 , 43 ] which is designed to improve genetic testing knowledge, accuracy of breast cancer risk perceptions, and self-efficacy to engage in a collaborative dialogue about genetic testing. Specifically, our aim is to conduct a cluster randomized controlled trial to evaluate the effect of patient education with RealRisks and BNAV compared to patient education alone on promoting appropriate uptake of BRCA1/2 genetic counseling.…”