Understanding Breast Cancer Knowledge and Barriers to Treatment Adherence: A Qualitative Study Among Breast Cancer Survivors

Abstract

Abstract Disparities in breast cancer treatment receipt are common and multifactorial. Data are limited on how knowledge about one's breast cancer and understanding treatment rationales may impact treatment completion. In this qualitative analysis, we explored barriers to care with a focus on knowledge. We conducted 18 in-depth interviews with women from diverse socioeconomic backgrounds who were treated at Dana-Farber Cancer Institute (n = 12; Boston, MA) and Columbia University Medical Center (n = 6; New York, NY) and had undergone neo/adjuvant breast cancer treatment within the prior 3 years. Interviews focused on treatments received, adherence, barriers experienced, and questions related to breast cancer knowledge and treatment rationales. We analyzed transcribed interview recordings in N'Vivo using a two-stage coding process that allowed for both preconfigured and emergent themes. Answers for breast cancer knowledge were confirmed using medical records. In our analysis, over one-third of women reported incomplete therapy, including never initiating treatment, stopping treatment prematurely, or missing/delaying treatments due to logistical reasons (childcare, transportation) or patient preferences. Others reported treatment modifications because of provider recommendations. Nearly all women were able to accurately describe the rationale for recommended treatments. Among 17 women for whom medical records were available, women correctly reported 18–71% of their tumor characteristics; incorrect reporting was not consistently associated with treatment incompletion. In conclusion, logistical issues and patient preferences were the main reasons for incomplete therapy in our study. Understanding of treatment rationale was high, but breast cancer knowledge was variable. Further assessment of how knowledge may impact cancer care is warranted.