Abstract P2-05-01: Addressing barriers to adherence and quality of life among women recommended to receive chemoprevention for breast cancer prevention
Authors: Jones Jessica T. , Whisenant Meagan , Brassil Kelly J. , Warlick Hannah G. , Solis Emily , Kamat Sharvari , Maliackal Ann , Walters Amie , Ponce Darcy , Gonzalez Anneliese , Rios Denise , Emily Robinson 
Published: March 2023

Aims: While women with breast cancer may have increased survival when compared to other cancers, aggressive, multi-modal treatments are often required with significant impact on quality of life and economic cost, highlighting the importance of breast cancer prevention and screening. For the estimated 10 million women in the United States who meet high-risk criteria for breast cancer, evidence-based interventions may be implemented to reduce risk, including long-term chemoprevention. Engaging in preventative care requires a healthy woman to navigate a complicated decision-making process involving the woman’s perception of risk, access to information about risk and prevention strategies, access to care, social support, and the financial ability to manage cost of preventive care. Even with substantial evidence supporting chemoprevention for risk reduction, there is significant lack of uptake and adherence, especially among racial and ethnic minorities and underserved women. Given the missed opportunity for breast cancer prevention that this represents, it is critical to characterize the experience of women with chemoprevention to improve uptake and adherence to chemoprevention. Our aims were to explore the patient experience of women recommended to receive chemoprevention for breast cancer prevention. Methods: Sampling from a unique high-risk specialty care setting, we interviewed a diverse cohort of thirty women recommended to receive chemoprevention for breast cancer to learn about their experience in single semi-structured qualitative interviews. Content analysis was used to describe their experience and identify barriers to chemoprevention uptake and adherence. The MDASI-Breast was used to capture patient reported symptom burden at the time of interview. Results: Mean participant age was 54.6 years (range 34-87 years); 44.0% Hispanic; 20.0% Black; 81.0% receiving a selective estrogen receptor modulator, 19% receiving an aromatase inhibitor. Mean time since initiating chemoprevention was 14.0 months (range 1.1-49.3 months). At the time of the interview, women reported multiple symptoms, with the most severe reports of fatigue (mean severity 3.77, SD 2.91), sleep disturbance (mean severity 2.90, SD 2.47), problems with memory (mean severity 2.48, SD 2.07), drowsiness (mean severity 2.23, SD 2.14), and decrease in sexual interest or activity (mean severity 2.09, SD 2.38). In qualitative interviews, women reported barriers to preventive care related to symptom burden, access to care, access to accurate information, lack of understanding of breast cancer risk, and financial concerns. Content analysis found 20 symptoms related to both risk and preventive treatment, with 8 symptoms reported by ≥ 20% of women. All women described distress related to their risk, with 23.8% of women describing sadness related to their risk. In addition, 33.3% of women reported distress related to the impact of their own risk on their family, primarily on their children. Women (23.8%) described breast changes that were present when their risk was identified, such as a lump or pain. Treatment-related symptoms varied based on type of endocrine therapy received and history of surgery and included sleep disturbance (23.8% of women), pain (28.6%), hot flashes/night sweats (33.3%), fatigue (28.6%), and joint stiffness or soreness (23.8%). Women shared ways in which symptoms impacted daily functioning, work, relationships, and ability to enjoy life. Conclusions: Women at risk for breast cancer recommended to receive chemoprevention experience multiple barriers to adherence including symptoms related to their risk and preventive care, access to care and accurate information, and financial burden. Interventions are needed to improve access to care and symptom management.

Citation Format: Jessica T. Jones, Meagan Whisenant, Kelly J. Brassil, Hannah G. Warlick, Emily Solis, Sharvari Kamat, Ann Maliackal, Amie Walters, Darcy Ponce, Anneliese Gonzalez, Denise Rios, Robinson Emily. Addressing barriers to adherence and quality of life among women recommended to receive chemoprevention for breast cancer prevention [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P2-05-01.