Measuring Financial Toxicity in Cancer Patients

Pauline Lee, PharmD, and Jonas A. de Souza, MD

Financial toxicity is an emerging and growing problem for many patients. To keep pace with the rising costs of medical care in the United States, insurance companies have increasingly shifted the economic burden to patients in the form of higher premiums or co-payments. A 2015 survey by the Kaiser Family Foundation showed that worker contributions to premiums have increased by about 296% and deductibles have almost doubled.1 Patients diagnosed with cancer, which is one of the most expensive diseases to treat in the United States, are at risk of experiencing significant financial burden.2 These patients, in general, pay more out of pocket for their healthcare compared with those suffering from other chronic conditions,3,4 which, in turn, can harm the quality of cancer treatment. For example, financial burden could be a risk factor for nonadherence,5 as patients with higher co-payments were shown to be more likely to discontinue therapy in the first 6 months of treatment. In order to understand how financial toxicity affects cancer patients, it is important to identify effective methods to measure it.


There is increasing evidence that higher financial burden is correlated with poorer quality of life. Both objective and subjective measures to determine the financial condition of individuals and families have been studied extensively; however, there is no consensus on the best tool to measure financial distress in cancer patients. A common objective measure is defined as health-related spending in terms of the total family income, with 20% used as a common threshold for burden.6-8 However, objective measures such as insurance copayments or household income may not capture an individual’s feelings about the situation or their impact on a patient’s quality of life. In addition, healthrelated expenses are usually difficult to access and collect.

Shankaran and colleagues9 considered patients to have experienced financial burden if they accrued debt, sold, or refinanced their home, borrowed money from friends or family, or experienced a 20% or greater decline in their annual income as a result of treatment-related expenses. Zafar and colleagues10 enrolled colorectal and lung cancer survivors to assess financial burden and whether patients reported difficulties living on their household income or whether the quality of their insurance had changed. In this study, high financial burden was associated with lower household income, younger age, and poorer quality of life. The authors confirmed that financial burden is prevalent among cancer survivors and is correlated with patients’ health-related quality of life (as measured by the EuroQol or EQ-5D).

In another study, Fenn and colleagues11 examined the association between financial problems caused by cancer and reported quality of life in a sample of cancer survivors. Over 2000 cancer survivors participated in a survey in which they were asked, “To what degree has cancer caused financial problems for you and your family?” Possible responses were “a lot,” “some,” “a little,” or “not at all.” About 30% of patients reported some degree of financial problems. Those who reported “a lot” of financial distress (8.6%) were more likely to rate their physical health, mental health, and satisfaction with social activities and relationships as poor. They were also 4 times less likely to rate their quality of life as “excellent,” “very good,” or “good.” The authors concluded that increased financial burden from cancer care costs was the strongest independent predictor of poor quality of life among survivors compared with other factors such as age, race, education, insurance status, and family income. Delgado-Guay and colleagues12 interviewed patients with advanced cancer to assess their subjective experience of financial distress on a numeric scale (0 = best, 10 = worst). Findings showed financial distress was very prevalent (90% of patients) and was more severe than physical distress, distress about physical functioning, social or family distress, and emotional distress.9 These studies underscore the prevalence of financial distress among many cancer patients and illustrate its close association with a poor quality of life and difficulties living on household income.

Others have focused on developing and validating patient-reported outcome measures (PROMs) in order to assess financial burden experienced by patients. de Souza and colleagues13 developed a comprehensive score for financial toxicity (COST)-PROM, which was applied to advanced cancer patients and demonstrated validity.13 A follow-up study showed that COST correlated with the Functional Assessment of Cancer Therapy- General (or FACT-G) questionnaire, which is a quality of life instrument that can be used with a variety of chronic conditions originally validated in the general cancer population.14 Huntington and colleagues15 utilized the COST tool to measure the financial toxicity of 100 patients with multiple myeloma. In that population, worse financial toxicity was correlated with lower patient-reported income, higher use of savings, borrowing of money, and treatment delays (P <.001). Veenstra and colleagues16 aimed to derive and validate a patient-reported measure of personal financial burden in stage III colorectal cancer (CRC) patients during treatment. A survey was created to query patients on the financial impact of CRC treatment. A composite measure of financial burden, with a range of 0 to 6, was developed—higher scores denote increased financial burden. The authors found the mean financial burden score among all respondents was 1.72. Eighty-five percent of patients who reported chemotherapy use had significantly higher financial burden scores than those who did not (mean burden score 1.88 vs 0.88, P <.001).

Although not specifically developed for the cancer patient population, The Personal Financial Well-Being Scale (PFWBS),17 a brief and cursory framework to evaluate the general population’s reactions to their financial situation, has also been utilized. In fact, items from the PFWBS were used in early stages of the COST development but not retained by cancer patients in final development stages. We hypothesize that the main reason for the difference in elements between the COST and the PFWBS instruments is that concerns elicited by the general population (such as “go out to eat or go to a movie”) were ranked lower by cancer patients relative to other items in the earlier development stages of the COST instrument. Finally, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30),18 another prominent quality of life instrument developed in 1993 with a focus on cancer patients, does include 1 item that qualitatively assesses financial impact of the disease (“Has your physical condition or medical treatment caused you financial difficulties?”).


In this article, we have listed different methods that have been utilized to measure the financial burden in cancer patients—from single questions to elaborated PROMs—and included very objective measures, such as the percentage of healthcare costs related to a household income. We strongly believe standardization of these measures will allow further comparisons among different groups and facilitate clinical utilization. Eventually, selection of the instrument should be based on evidence, which can be gathered from the instrument’s developmental data, the instrument’s association with meaningful health outcomes, and its ease of use in clinical practice.

Knowing that cancer care costs are rapidly increasing and may yield negative financial consequences, evidencebased and validated tools can assist physicians to screen patients for financial toxicity. Once identified, physician referrals to financial assistance, switching to a less expensive medication, decreasing the number of tests, and decreasing the number of doctor visits can possibly prevent the impact of financial distress. Finally, similar to any other side effect, it is imperative that healthcare providers clearly inform patients about the possibility of financial toxicity when receiving cancer treatment and be more cognizant of cost-effective cancer treatment when making clinical decisions. EBO
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