Financial Toxicity in Adults With Cancer: Adverse Outcomes and Noncompliance

Thomas G. Knight; Allison M. Deal; Stacie B. Dusetzina; Hyman B. Muss; Seul Ki Choi; Jeannette T. Bensen; Grant R. Williams


J Oncol Pract. 2018;14(11) 

In This Article


Over the past several years, the impact of cancer and its treatment on patient financial well-being has become a topic of major concern. We undertook this analysis to better understand the prevalence and consequences of financial toxicity in adults with cancer as well as to identify potential areas amendable to intervention. In a large academic medical center in the southeastern United States, we found that 26% of patients visiting oncology clinics reported having to pay for more medical care than they could afford. Patients who were identified as reporting financial toxicity were less likely to fill their medications, attend office visits, and undergo recommended medical tests. The most commonly reported reasons for delayed medical care was difficulties with transportation, lack of insurance, inability to take time off work, inability to pay for travel, and inability to pay general household expenses.

Multiple definitions of financial toxicity exist. In this study, we focused on whether the patient agreed with the statement "You have to pay for more medical care than you can afford" from the PSQ-18 to screen a large number of patients who were potentially experiencing financial toxicity. Asking this single question to screen and identify a population at high risk for financial toxicity could be valuable in in the context of a busy clinic environment. Despite only using a single screening question as our identifier, we were able to spotlight an extremely high-risk population consisting of > 25% of our participants who reported financial toxicity that was associated with an increased risk for medical noncompliance, including an inability to afford medications and doctor's visits. To that end, our calculated prevalence of 26% is actually lower than the 42% seen in the Zafar et al[11] pilot study, but is similar to the 29% in the Medical Expenditure Panel Survey data of patients with cancer reported by Kale et al,[17] which encompassed a much larger population. Patients identified as reporting financial toxicity also had a demographic profile similar to that in other reports where being younger, nonwhite, less educated, and not married were associated with greater rates of financial toxicity.[15,20,27]

In terms of noncompliance, several studies have shown this is an issue in specific disease processes. Dusetzina et al[6] found that patients with chronic myeloid leukemia and high copayments were at risk for nonadherence to tyrosine kinase inhibitor therapy, and Neugut et al[28] found that higher prescription copayments were associated with nonpersistence and nonadherence to aromatase inhibitor therapy. In our study, we also saw that patients who exhibited financial toxicity were much more likely to be unable to afford their prescription and over-the-counter medications. However, one of the key findings in our study is that this noncompliance with treatment extends to not only medications but also with all aspects of medical care. Of great concern is the increased rate of missed doctor's visits and medical tests that can have serious treatment consequences, particularly in oncologic care. It should also be noted that the majority of our patients exhibiting financial toxicity were still within 2 years of their initial diagnosis and presumably some were under active treatment, which makes it imperative that they are closely monitored with frequent visits and laboratory tests. The noncompliance secondary to cost seen in this study is of grave concern for our patients and can lead to potentially significant morbidity and mortality.

In addition to identifying rates of noncompliance with recommended medical care, owing to financial concerns, we also hoped to identify potential targets for intervention for patients experiencing financial toxicity. Historically, oncologists have been reluctant to discuss costs of treatment with patients. In one survey, Schrag et al[29] found that 58% of medical oncologists reported discussing the cost of treatment with patients only sometimes or less because of a perceived inability to address the problem. This is possibly linked to a concern for strategy even if these issues are identified. However, we found several specific areas, including transportation costs, work concerns, and insurance issues, that potentially lead to delays in care. These are issues that, in a real-world clinic setting, are sometimes unable to be modified; however, they are also issues that potentially can be addressed with institutional and foundational support if identified and discussed with researchers heading pilot studies in this area, which are starting to be reported and that show feasibility.[30] In a recent study of 11,186 new patients with cancer seen by specially trained financial navigators, patient saved an average of $33,265 annually on medication, $12,256 through enrollment in insurance plans, $35,294 with premium assistance, and $3,076 with copay assistance.[31] In our practice, transportation needs are factored into overall treatments plans, with treatments and laboratory work being done as close to the patient's home as possible, when feasible, and funding made available for travel needs. More research is urgently needed and ongoing.

We should acknowledge key limitations of our study. This was a single-center, retrospective review of an institutional database. As such, we cannot specifically determine causal relationships between reported financial toxicity and noncompliance or delays in care. We also recognize that because the data were taken from a patient-reported survey, noncompliance outcomes were subject to recall bias. Another limitation is a lack of patients with lung cancer or hematologic malignancy in this database, which represented an enrollment bias as a result of the current enrollment structure, which was clinic based and did not have enrollment staff regularly at these clinics. We are also missing several key variables, owing to study design, including treatment information and additional sociodemographic data, including income and insurance, which limit our analysis. Also in terms of design, our definition of financial toxicity is some what broad by intention because we wanted to be able to quickly implement a one-question screener into a real-world intervention. In particular, the Comprehensive Score for Financial Toxicity measure has been subsequently developed as a validated tool to assess for financial toxicity.[32,33] However, our data do seem consistent with t previously reported data and we feel there is real value to shorter screening tools in a busy clinical environment.[11,15–18] Finally, there is the question of applicability of our findings from a single center to other centers' practice. However, as a large, state-run hospital system, our patient population did seem to be quite diverse at both demographic and socioeconomic levels, which is reflected in Table 1. Nonetheless, with the similarity of our findings to those of smaller-scale research reported from different geographic areas, we do feel that we have been able to identify and characterize a problem that is systemic throughout the American health care system. Finally, we should acknowledge that our project encompasses the time before and after the implementation of the Affordable Care Act in the United States, with the important caveat that North Carolina did not participate in the Medicaid expansion, and this may have affected the results of our study.

Ultimately, the financial impact of cancer care is a relatively new area of research that is increasingly being recognized as a major factor in the outcomes of patients with cancer. We feel that our data confirm findings of smaller studies of patient-reported data, but also, and perhaps more importantly, enable us to identify with one question an extremely vulnerable population that could benefit from interventional strategies to address financial hardship, which would seem to indicate that there is validity in short-form screening in this issue. This will hopefully allow our group as well as investigators nationally to implement screening procedures with related and better-validated screening tools for patients in the clinic to identify those at highest risk and quickly address these issues.