When examining financial toxicities associated with breast cancer treatment, investigators identified 4 knowledge gaps, including treatment expectations, provider conversations, resource identification, and support finding, as well as highlighting that financial toxicity mitigation is an important step in optimizing treatment for this population, according to findings from a qualitative analysis.
Investigators identified direct and indirect costs worked to determine objective financial burden and subjective financial distress related to psychosocial, behavioral, and material impact from both diagnosis and treatment.
“This unique study of patients who sought financial support from a fund intended to support women experiencing financial toxicity after breast cancer diagnosis enhances previous understanding. It complements an existing framework of financial toxicity by suggesting the addition of treatment expectations as an important novel theme affecting financial toxicity in participants we interviewed,” the investigators wrote.
The study took place from November 2019 to November 2020, with eligible patients receiving aid from the Pink Fund, which aimed to offset financial toxicity by offering $3000 to patients who were actively being treated for breast cancer. Additionally, the organization required that patients be working at the time of diagnosis, have experienced a loss of income, and had a household income level 500% or less than the federal poverty level.
In total, 116 patients returned consent forms that were signed, 32 of whom were selected due to diversity in terms of race, income, education, and in having dependents. It was assumed that all patients had experienced financial toxicity, as they all needed financial aid while undergoing treatment. Patients who participated completed a semi-structured recorded phone interview plus an interview guide that included input from key leaders in survey design, qualitative interviewing, financial distress, bankruptcy law, and oncology. Interview guide domains included subjective and objective burdens, provider interactions, advice for future patients, and support from organizations that were philanthropic in nature.
Investigators reported that 58% of patients were non-Hispanic White, 25.8% were Black, and 9.7% were Hispanic. Additionally, patients had a mean age of 46 years at the time of application. The majority of patients had a college education with a bachelor’s degree or better (65.7%). One-quarter of patients had an adjusted gross income of less than $25,000 compared with 22% of patients who had an income of more than $75,000 per year prior to diagnosis. Half of the participants were the sole source of income for their household and half of all patients had dependents. Prior to being diagnosed, three-quarters of the population worked full time, however following diagnosis, only a single patient continued to work full time.
Patients experienced emotional and financial stress following their diagnosis no matter their economic, social, and familial characteristics. A notable number of patients discussed the negative impact of a cancer diagnosis plus financial difficulties, highlighting the synergistic effect garnered by combining objective burden with subjective distress.
Financial burden for patients included both direct costs, such as treatment and supportive care costs, and indirect costs, such as loss of income and employment disruptions. Additionally, subjective distress, which included concerns beyond direct costs like changes in spending and how resources are being used; patients reported accumulating debt, tapping into savings, and even paying bills late. Investigators stated that in terms of psychosocial distress, patients reported significant anxiety, stress, and worry in relation to both their diagnosis and financial status. In order to financially cope, patients reportedly changed their lifestyles and asked for help within their support network.
“Patient knowledge and expectations related to treatment costs and burden were identified as a novel recurring theme that did not fit into the pre-existing financial toxicity framework and significantly affected participants’ experiences. Expectations affected both objective financial burden and subjective financial distress and thus patients’ experience of financial toxicity,” the investigators wrote.
A disconnect was noted with the expectation of patients in terms of what would happen during treatment, cost- and timeline-wise, that led to an increase in objective financial burden. Such inefficient choices included no preparation to be away from work for an extended time, expecting income to stabilize sooner than it did, and expecting that treatment costs would meet deductibles sooner. A better management of expectations with regard to financial burden would have helped with better preparation in terms of objective burdens and subjective distress, patients reported.
With regard to knowledge gaps, patients also reported the importance of exploring the means to manage care expectations. Additionally, those who participated in the study stated having few to no conversations with their providers with regard to the impact of treatment on their finances or the associated burdens. Patients highlighted that financial implications are an important topic of conversation with providers. The population reported having challenges with regard to identifying financial assistance while undergoing treatment. This resulted in patients gathering information outside of the healthcare system.
Gharzai LA, Ryan KA, Szczygiel L, et al. Financial toxicity during breast cancer treatment: A qualitative analysis to inform strategies for mitigation. JCO Oncol Prac. 2021;17(10):e1413-e1423. doi:10.1200/OP.21.00182