Hidden Costs of Endocrine Therapy for Black Breast Cancer Survivors: A Qualitative Examination of Patient and Provider Experiences.

Background: Non-adherence to endocrine therapy (ET) remains an unsolved clinical issue that decreases rates of survival. Non-white race and socioeconomic status have been associated with ET non-adherence, but the reasons for these disparities are unclear. Addressing this issue effectively requires the characterization of the contributing factors to these inequities. This qualitative study aims to explore the influence of race and socioeconomic status on ET adherence through the perspectives of Black breast cancer survivors (BCS) and oncology providers.

Methods: We conducted individual semi-structured interviews with 24 Black BCS and 9 providers at a single cancer center.

Results: BCS had a median age of 55 years (IQR = 17 years). About 1/4 had ≤high school diploma (26.1%) and 37.7% completed ≥college education. About 1/3 of BCS had annual household incomes of ≤$40,000 (30.4%), $40,000 to $100,000 (34.8%), or ≥$100,000 (34.8%). Forty-three percent of BCS had private insurance; 39.1% were insured through Medicaid, Medicare, or the federal healthcare exchange; 13% were uninsured. Five qualitative themes emerged from both patients and providers: (1) Limited access to initial and continued care; (2) patient discomfort, distrust, and fear of discrimination; (3) cost of ET can be a barrier to adherence; (4) costs of managing symptoms can be a barrier to adherence; and (5) time toxicity - time and effort needed to coordinate symptom management.

Conclusions: In addition to cost of ET medications, we identified additional financial and time toxicity related to side-effect management. Black BCS face a myriad of costs which can potentially impact ET adherence.