“I Just Had to Do What I Had to Do”: Characterizing Direct and Indirect Prostate Cancer Treatment Costs for Black Survivors and Their Caregivers

Abstract

Introduction. Financial hardship is prevalent among Black prostate cancer survivors and exacerbates health disparities. Characterizing and sharing cost information with patients can facilitate well-informed treatment decision making. Our research explored the direct and indirect costs associated with prostate cancer treatment among Black men and their caregivers. Direct costs included out-of-pocket and insurance-related fees, and indirect costs included the unforeseen costs of care, including patient time, caregiver time, lost wages, and transportation. Methods. We conducted semi-structured interviews with Black prostate cancer survivors and their caregivers to learn about the experience of direct and indirect costs. The interview guide and data analysis were informed by the Measures of Financial Wellbeing framework to gain a better understanding of the material, behavioral, and psychosocial aspects of care-related costs. Guided by a qualitative descriptive approach, we used inductive and deductive coding for our thematic analysis. Results. Eleven prostate cancer survivors with a median age of 68 y (interquartile range [IQR] 62.0–71.5 y) and 11 caregivers with a median age of 64 y (IQR 58.5–70.5 y) participated. We grouped themes into 3 domains and their intersections (i.e., material, behavioral, psychosocial). Participants reported their work and insurance had a significant influence on their finances, treatment costs required rearranging of household budgets, and the weight of indirect costs varied. Ultimately, participants emphasized the significant impact of care costs and the adjustments needed to adapt to them. Discussion. The complexities of material, behavioral, and psychosocial domains of direct and indirect costs of prostate cancer are critical to address when supporting those diagnosed with prostate cancer when making preference-sensitive treatment decisions. The interconnectedness between indirect costs highlights the wide-ranging impact financial well-being has on prostate cancer survivors and caregivers. Highlights Direct and indirect costs have a wide-ranging impact on the material, behavioral, and psychosocial aspects of financial well-being of Black prostate cancer survivors and their caregivers. These results emphasize the need for sharing cost information to support medical decision making. Future research should focus on the design of cost-sharing interventions that target the complexities of direct and indirect costs collectively, rather than separately.