Feeling the Pain of Financial Toxicity


Using the COST questionaire (COmprehensive Score for financial Toxicity), researchers believe they can measure and score a patients risk for financial toxicity on a grading system.

Jonas de Souza, MD

Jonas de Souza, MD

Jonas de Souza, MD

Financial toxicity is the anxiety and distress that patients feel as a result of steep medical costs, usually compounded by an inability to work. Jonas de Souza, MD, an assistant professor at University of Chicago Medicine, is on the forefront of researching financial toxicity and creating a grading system to measure patients’ financial burden.

Compiling data from a questionnaire called COST (COmprehensive Score for financial Toxicity), de Souza and his team believe they can measure a patient’s risk for financial distress. Information gathered in the survey includes patient characteristics, clinical trial participation, healthcare use, willingness to discuss costs, psychological distress, and health-related quality of life.

The questionnaire contains 11 short statements about costs, resources, and concerns, for example, “My out-of-pocket expenses are more than I thought they would be.” Patients are asked to circle their level of concern based on a 1-5 scale. The researchers found that employment status, household income, psychological distress, number of hospitalizations, and African American race were associated with financial toxicity.

In a recent interview with Oncology Nursing News, de Souza discussed his research team’s findings and why financial distress discussions are so important in oncology care today.

Could you talk a little about financial toxicity, and why it’s such a problem in oncology?

Just like any other side effect, in any cancer, we also talk about the finances of our patients as a side effect of what we do to them. The out-of-pocket costs of their treatments, the lack of income they have related to the disease and sometimes how hard they take the treatment—we’re saying that’s a toxicity, just like hair loss or numbness and tingling from neuropathy. What we do to the patients may pose some financial consequences for patients.

There’s a lot of incentive right now to talk about finances with our patients. What we’re trying to do is learn how to grade it and start talking to the patients about how, for example: “This therapy may cause grade 1 financial toxicity or grade 3”—just like we do with other side effects. And that’s what our research is trying to accomplish.

How do you go about creating that system for grading financial toxicity?

We have to learn from patients, assess large groups of patients who are undergoing different kinds of therapies, and try to understand what are the drivers of their toxicity? Then we start to create a way of measuring these patients.

We created, about 2 years ago, a patient-reported outcome, called COST. Patients report how financially distressed they are, using these instruments. We developed a pilot in a large sample of patients, then we created the registry, so we can learn from a large number of patients, what are their scores of financial toxicity, and what are driving their scores? Is it out-of-pocket—are the copayments or cost-sharing too high? Does the distress derive from losing income or loss of work when treatment has been so intensive, the patient cannot go back to work once the treatment is done, or during the treatment? Is the problem being admitted to the hospital very frequently, causing higher out-of-pocket and loss of income? That’s what we’re trying to learn.

First, we develop a way of assessing this toxicity; second, we have to go to the patients and try to find out what are the toxicity drivers for each kind of cancer. And third, we have to learn how to intervene. Who are the patients that need help the most and how can we help them?

What are some of the options to help lessen patients’ financial toxicity?

There’s a lot of interest now in developing interventions. At the patient level, should we provide these patients with financial navigators, people who can match them with resources? If the patients have issues paying out of pocket, can we match them to some foundations that can help with these costs? If the patient has issues with transportation, can we help with this?

At a broader level, how can we decrease the cost of what we do? How can we decrease the cost that is passed to the patient? These are 2 different issues. The cost of everything is usually borne by the payer, and there’s usually cost-sharing for the patient. How can we decrease the cost to the payer, to society, and also decrease the cost-sharing to the patient?

Among the solutions being discussed is value-based insurance design. Should we try to decrease the out-of-pocket cost or patient cost-sharing if the intervention, drug, or regimen work really well and provide a lot of benefit to the patient? What is the impact of treating a patient using [evidence-based clinical] pathways [based on tumor type]? When pathways are used, maybe we can decrease out-of-pocket costs to the patient? These are some solutions that people are talking about, that we’re studying.

Why did you decide to focus on this area of financial burden?

Because it’s an unmet need. Now, with the amount of therapy, with all these therapies, costs of treating patients are increasing. And patients are feeling this pain. They might not have the same effects they had 10 years ago, with all that chemotherapy, but now they have this financial toxicity. So it’s an unmet need for these patients, to assess and hopefully treat them.

Do you think that oncology practitioners are ready to treat this the way that you manage other toxicities?

I think that’s the future. We treat more and more patients, and we are getting to the point that some patients are telling us, they cannot pay for this medication or the insurance is not going to pay for it. I don’t think this was a problem 10 years ago. But more and more patients will face these issues, and we can grade the toxicity based on evidence: this is a grade 1 or 2 toxicity, just like we do with other toxicities. We should have more people studying this and developing solutions with the patient in mind.

de Souza JA, Yap BJ, Wroblewski K, et al. Measuring financial toxicity as a clinically relevant patient-reported outcome: the validation of the COmprehensive Score for financial Toxicity [published online before print October 7, 2016]. Cancer.

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