With Jonas de Souza, MD, MBA, of The University of Chicago Medicine
By Sarah DiGiulio
Research has established (along with countless personal anecdotes from cancer patients across the U.S.) that financial toxicity is a growing problem in cancer care—and one that will limit the quality of care that U.S. oncologists can provide. One barrier standing in the way of addressing the problem is the fact that there's no good standardized way to measure just how burdened cancer patients actually are, explained Jonas de Souza, MD, MBA, a medical oncologist at the University of Chicago Medicine.
That's why he and his colleagues developed and tested a new tool—the COmprehensive Score for financial Toxicity (COST) measure. The results validating that the tool reliably measured patients' financial burden were recently published online ahead of print in Cancer (DOI: 10.1002/cncr.30369).
"We wanted to show that the tool we developed actually performs well in practice. For example, by using the tool, were we measuring quality of life, wealth, depression—or were we actually measuring financial concerns?" de Souza explained.
The researchers tested the tool on 236 patients from either the University of Chicago Medicine or the NorthShore UniversityHealth System who had been diagnosed with stage IV cancer. They compared the patients' COST scores to other health-related quality-of-life scores, which showed that
the COST tool measured financial distress independently of income or psycho-social distress. They also found the tool to be reliable and consistent.
Here's more from de Souza about how the tool works and what he believes oncologists everywhere should know about using it in their own practices.
1. How does the COST tool work and what makes it different from other financial toxicity measures?
"It is the result of the work of 4 years with cancer patients. The questions were elicited and ranked by cancer patients. For example, when asking about finances in general, one can ask whether patients 'decreased going out for dinner due to out-of-pocket costs.' For the cancer patients we interviewed, this type of question was just not that important. (Maybe because cancer patients develop other priorities or concerns related to their finances, such as the sense of losing control over their finances—e.g. 'I feel I have no choice about the amount of money I spend on care.')
"One difference [compared with other financial toxicity measures] is related to the validation process. In order to be sure we were not actually measuring something else—such as quality of life, income, or psychological distress—but likely a combination of all of those on the finances, we have to go directly to the patients and actually measure all of [those variables] at the same time.
"Finally, when doing this type of research, we are always worried about the type of population we are interviewing. For example, are we only interviewing well-off patients? Or are we only interviewing patients on clinical trials who actually may have fewer out-of-pocket costs than other patients? Are we only interviewing patients who are willing to discuss costs with their physicians and may be having financial issues?
"In validating the COST tool, we were careful to document and account in the analyses for patients who were on clinical trials, [as well as] patients who want and those who did not want to discuss costs. And we also reported on the patients who did not want to participate in the research, showing that we did not have any type of selection bias.
"For these reasons, I would say that the COST is a validated patient-reported outcome that actually measures financial concerns."
2. Is it feasible for this tool to be used widely across other institutions and by other oncologists?
"The main challenge is related to what to do after a patient is 'diagnosed' with financial toxicity. One must have systems in place and available ways to intervene.
"We have made the tool available for any provider at www.costofcancercare.org. The results of the tool will come out automatically, placing the patient in contact with others who also filled out the tool. This is available and free for patients and their providers.
"But, I would say that providers must have systems in place to help the cancer patients when using such a tool. Just telling the patient 'you have financial issues' is simply not acceptable and not enough. We have to help them."
3. What should oncologists and oncology care providers know about financial toxicity and using this tool themselves?
"Financial toxicity is a side effect like any other. Providers should diagnose what is causing it and treat it accordingly.
"And [to those who] think that providers are not educated to talk about costs: [Providers] are educated to talk about side effects. Therefore, by considering [financial toxicity] a side effect, we can start a conversation with our patients about it.
"What would one do if a patient has pain? Find out the reason and prescribe something to ameliorate the pain. It is not different with financial toxicity. At times, it may be the out-of-pocket costs related to a treatment [that is problematic], while other times the loss of income related to a particular condition. These different causes will then trigger different interventions. For one patient, it may be help paying the medical bills, while for others, filling out social security papers or helping them return to work."