Long-term financial burden of breast cancer: experiences of a diverse cohort of survivors identified through population-based registries

Abstract

Purpose: To evaluate the financial experiences of a racially and ethnically diverse cohort of long-term breast cancer survivors (17% African American, 40% Latina) identified through population-based registries.

Methods: Longitudinal study of women diagnosed with nonmetastatic breast cancer in 2005 to 2007 and reported to the SEER registries of metropolitan Los Angeles and Detroit. We surveyed 3,133 women approximately 9 months after diagnosis and 4 years later. Multivariable models evaluated correlates of self-reported decline in financial status attributed to breast cancer and of experiencing at least one type of privation (economically motivated treatment nonadherence and broader hardships related to medical expenses).

Results: Among 1,502 patients responding to both surveys, median out-of-pocket expenses were ≤ $2,000; 17% of respondents reported spending > $5,000; 12% reported having medical debt 4 years postdiagnosis. Debt varied significantly by race: 9% of whites, 15% of blacks, 17% of English-speaking Latinas, and 10% of Spanish-speaking Latinas reported debt (P = .03). Overall, 25% of women experienced financial decline at least partly attributed to breast cancer; Spanish-speaking Latinas had significantly increased odds of this decline relative to whites (odds ratio [OR], 2.76; P = .006). At least one privation was experienced by 18% of the sample; blacks (OR, 2.6; P < .001) and English-speaking Latinas (OR, 2.2; P = .02) were significantly more likely to have experienced privation than whites.

Conclusion: Racial and ethnic minority patients appear most vulnerable to privations and financial decline attributable to breast cancer, even after adjustment for income, education, and employment. These findings should motivate efforts to control costs and ensure communication between patients and providers regarding financial distress, particularly for vulnerable subgroups.

Fig 1.

Each bar depicts the percent of respondents who reported being worse off since diagnosis; the blue portion indicates those who attributed this at least partly to breast cancer. (A) The overall proportion of patients reporting decline in financial status varied significantly by race/ethnicity (P < .001), as did the proportion attributing decline at least partly to breast cancer (P < .001). (B) The overall proportion reporting decline in employment status did not vary by race/ethnicity (P = .23), but the proportion of those attributing the decline at least partly to breast cancer did (P = .005). (C) The overall proportion reporting decline in insurance status did not vary by race/ethnicity (P = .52), but the proportion of those attributing it at least partly to breast cancer did (P = .006).

Fig A1.

This figure depicts the evolution of the analytic sample of women diagnosed with breast cancer in metropolitan Los Angeles and Detroit. Cases were initially selected on the basis of rapid case ascertainment, which lacks the level of quality control that is ultimately used to determine inclusion in the SEER registry. Certain cases that were initially identified and surveyed were ultimately excluded from SEER because they were no longer considered to be reportable cases after quality control; as shown above, 22 cases could not be merged to SEER and were therefore excluded from the sample.