BACKGROUND
: Chemopreventive agents such as selective estrogen receptor modulators (SERMs) and aromatase inhibitors (AIs) have proven efficacy in reducing breast cancer risk by 41%-79% in high risk women. Women at high risk of developing breast cancer face the complex decision of whether to take SERMs or AIs for breast cancer chemoprevention. RealRisks, is a patient-centered web-based decision aid (DA) that was designed to promote understanding of breast cancer risk and to engage diverse women in planning a preference-sensitive course of decision-making about taking chemoprevention.
OBJECTIVE
We aimed to understand perceptions of women at high-risk for developing breast cancer regarding their experience using RealRisks, a DA designed to promote uptake of breast cancer chemoprevention and to understand their information needs.
METHODS
We completed enrollment to a randomized controlled trial (RCT) among 300 racially/ethnically diverse women at high-risk of breast cancer, who were assigned to standard educational materials alone or in combination with RealRisks. We conducted semi-structured interviews with a subset of 27 high-risk women enrolled in the intervention arm of the RCT who initially accessed the tool on average one-year prior, to understand how they interacted with the tool. All interviews were audio-recorded, transcribed verbatim, and compared against the digital audio recordings to ensure accuracy of the content. We used content analysis to generate themes.
RESULTS
The mean age of the 27 participants was 60.9 years (SD=10.3). Participants were 18.5% non-Hispanic black, 14.8% Hispanic/Latina, and 3.7% Asian. Most participants (78%) reported using RealRisks after being granted access to the DA. Four overarching themes emerged from the qualitative analyses: (1) acceptability of the intervention, (2) specifically endorsed elements of the DA, (3) recommendations for improvements, and (4) information needs. Most women who used RealRisks found it acceptable (n=21/27) and considered it to be helpful. Most women (n=13/21) reported that RealRisks was easy to navigate, user-friendly, and easily accessible online. The majority felt that RealRisks improved their knowledge about breast cancer risk and chemoprevention options (n=18/21), and that RealRisks informed their decision-making about whether or not to take chemoprevention (n=17/21). Some women (n=9/21) shared recommendations for improvements, as they wanted more tailoring based upon user characteristics, felt the DA was targeting a narrow population of Hispanic/Latina by using graphic novel-style narratives, wanted more understandable terminology, and felt that the tool had too strong of an emphasis on chemoprevention drugs. Participants also shared their information needs on mammography screening frequency and modifiable lifestyle factors.
CONCLUSIONS
This qualitative study has demonstrated the acceptability of the RealRisks web-based DA among a diverse group of high-risk women with some recommendations for improvement. These results emphasize the need for more tailoring of the DA based on user characteristics, a comprehensive approach to reducing breast cancer risk, and information needs.
Study protocol: Randomized controlled trial of web-based decision support tools for high-risk women and healthcare providers to increase breast cancer chemoprevention
