Perceptions of Racially and Ethnically Diverse Women at High Risk of Breast Cancer Regarding the Use of a Web-Based Decision Aid for Chemoprevention: Qualitative Study Nested Within a Randomized Controlled Trial.

Tarsha Jones,Katherine Freeman,Katherine Crew,Thomas Silverman,Rita Kukafka,Ashlee Guzman

doi:10.2196/23839

Tarsha Jones, Katherine Freeman + Show 4 more

Open Access

https://doi.org/10.2196/23839

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Abstract

BackgroundChemopreventive agents such as selective estrogen receptor modulators and aromatase inhibitors have proven efficacy in reducing breast cancer risk by 41% to 79% in high-risk women. Women at high risk of developing breast cancer face the complex decision of whether to take selective estrogen receptor modulators or aromatase inhibitors for breast cancer chemoprevention. RealRisks is a patient-centered, web-based decision aid (DA) designed to promote the understanding of breast cancer risk and to engage diverse women in planning a preference-sensitive course of decision making about taking chemoprevention.ObjectiveThis study aims to understand the perceptions of women at high risk of developing breast cancer regarding their experience with using RealRisks—a DA designed to promote the uptake of breast cancer chemoprevention—and to understand their information needs.MethodsWe completed enrollment to a randomized controlled trial among 300 racially and ethnically diverse women at high risk of breast cancer who were assigned to standard educational materials alone or such materials in combination with RealRisks. We conducted semistructured interviews with a subset of 21 high-risk women enrolled in the intervention arm of the randomized controlled trial who initially accessed the tool (on average, 1 year earlier) to understand how they interacted with the tool. All interviews were audio recorded, transcribed verbatim, and compared with digital audio recordings to ensure the accuracy of the content. We used content analysis to generate themes.ResultsThe mean age of the 21 participants was 58.5 (SD 10.1) years. The participants were 5% (1/21) Asian, 24% (5/21) Black or African American, and 71% (15/21) White; 10% (2/21) of participants were Hispanic or Latina. All participants reported using RealRisks after being granted access to the DA. In total, 4 overarching themes emerged from the qualitative analyses: the acceptability of the intervention, specifically endorsed elements of the DA, recommendations for improvements, and information needs. All women found RealRisks to be acceptable and considered it to be helpful (21/21, 100%). Most women (13/21, 62%) reported that RealRisks was easy to navigate, user-friendly, and easily accessible on the web. The majority of women (18/21, 86%) felt that RealRisks improved their knowledge about breast cancer risk and chemoprevention options and that RealRisks informed their (17/21, 81%) decision about whether or not to take chemoprevention. Some women (9/21, 43%) shared recommendations for improvements, as they wanted more tailoring based on user characteristics, felt that the DA was targeting a narrow population of Hispanic or Latina by using graphic novel–style narratives, wanted more understandable terminology, and felt that the tool placed a strong emphasis on chemoprevention drugs.ConclusionsThis qualitative study demonstrated the acceptability of the RealRisks web-based DA among a diverse group of high-risk women, who provided some recommendations for improvement.

Highlights

Breast cancer is the most commonly diagnosed cancer among women in the United States and the second leading cause of cancer-related deaths; prevention of the disease would significantly improve public health [1]
The majority of women (18/21, 86%) felt that RealRisks improved their knowledge about breast cancer risk and chemoprevention options and that RealRisks informed their (17/21, 81%) decision about whether or not to take chemoprevention
This qualitative study demonstrated the acceptability of the RealRisks web-based decision aid (DA) among a diverse group of high-risk women, who provided some recommendations for improvement

Summary

Introduction

Breast cancer is the most commonly diagnosed cancer among women in the United States and the second leading cause of cancer-related deaths; prevention of the disease would significantly improve public health [1]. High-risk criteria for breast cancer are defined as a 5-year invasive breast cancer risk of ≥1.67% or lifetime risk score of ≥20% according to the Gail risk model, which accounts for age, race and ethnicity, benign breast disease, first-degree family history of breast cancer, and reproductive factors [4,5] Chemopreventive agents such as selective estrogen receptor modulators (tamoxifen and raloxifene) and aromatase inhibitors (exemestane and anastrozole) have been shown to reduce breast cancer risk by 41%-79% among high-risk women [6]. Racial and ethnic minority women are less likely to seek breast cancer preventive care [7,8], which contributes to higher rates of late-stage diagnoses, poorer clinical outcomes, and health disparities [9,10,11] Chemopreventive agents such as selective estrogen receptor modulators and aromatase inhibitors have proven efficacy in reducing breast cancer risk by 41% to 79% in high-risk women. RealRisks is a patient-centered, web-based decision aid (DA) designed to promote the understanding of breast cancer risk and to engage diverse women in planning a preference-sensitive course of decision making about taking chemoprevention

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