Financial Toxicity in Adults With Cancer: Adverse Outcomes and Noncompliance

Dr. Thomas Knight talks to Dr. Pennell about a major issue in cancer care: financial toxicity.
Read the related article.

Hello, and welcome back to the ASCO Journal of Oncology Practice podcast. This is Dr. Nate Pennell, medical oncologist at the Cleveland Clinic and consultant editor for the JOP. The rising costs of medical care is on everyone's mind these days. But while policymakers or physicians tend to discuss this more of as a societal or economic problem, the real consequences of the high costs of cancer care are ultimately being felt by our patients. But how do we measure the financial burdens of cancer care? And how does this impact our patients' lives and ultimately their outcomes from treatment? Today, we're going to be talking about a new paper titled, Financial Toxicity in Adults With Cancer Adverse Outcomes in Noncompliance, published in the November 2018 JOP. Joining me for this podcast is Dr. Greg Knight, medical oncologist at the Levine Cancer Institute in Charlotte, North Carolina. Greg, thanks so much for joining me today. Thank you so much for having me. So I thought this was a really interesting paper. Can we just start with a little bit of terminology? So what do you mean when you're talking about financial toxicity? I've heard people use this term bandied about. I think it's a term that oncologists are used to dealing with. And obviously, we know that health care is expensive. But this implies that there is a harmful element to this. Yeah, sure. The term financial toxicity is still a relatively new term. We first started to use it probably around 2013. Dr. Zafar at Duke published a paper first looking at this in terms of the costs and the harm to patients. And the idea behind it is we want to be able to quantify what we're doing in terms of harm to the patient with the costs of treatment. As oncologists, one of the things that we're really good at is grading toxicities. So we worry about nausea. We worry about neuropathy. We worry about hair loss. But one of the things that we weren't very good at was also looking at the harm we were doing to patients with the costs of our treatment. And when I refer to cost of treatment, this term actually encompasses a lot, in terms of not just what we usually think of, which is offices, it's medications, hospitalizations, all those bills that they get from us, but there's other costs that go along with having a cancer diagnosis. Those are things like transportation, clothing, lost wages, child care. All of these things are impacting our patients. And we need to quantify this because it does have implications on their treatment and how they're going to do. Well, that makes perfect sense. And I think that's something relatable to everyone who's treating cancer patients today. Can you give us a little bit of an idea of the magnitude of this issue in the United States? Is there existing data before your particular study came out? There were some both small scale papers and some large database looking papers. And the general consensus was, at the time when we started this study was about 1/3 of patients are going to have severe or catastrophic financial difficulties associated with their treatment. Wow. That's a huge number. So why don't you tell me a little bit about your study and what was the intention of the study and how did you go about it. One of the things we really wanted to do with this study, which was part of a much larger study we had at the University of North Carolina, was we wanted to evaluate both prevalence of this financial toxicity. Because again, there had been some database studies. There had been some smaller scale studies. But we wanted to get actual patient reported data on the prevalence of this financial toxicity and in a wide variety of cancers. But we also really wanted to look and see other things. How did it impact health services? Basically what are targets that we could intervene on to try to improve this? And so really with this study, what we did was we went into the clinics of all of the oncology clinics at UNC, and we embedded researchers in there and approached pretty much any patient that came to the clinic. Wildly successful actually, we had over 52% of our approached individuals actually enrolled in our study. And then within two weeks of that enrollment, we had interviews conducted by our staff using basically a computer assisted telephone interview. Now as I said, this was part of a much larger project. And what we were trying to do was basically get this comprehensive database of both clinical and interview data. And then we paired that with biologic specimens and tumor tissue. However, our piece of it was we were really trying to delve down on this financial question and then look at quality of life and how it impacted their care. Are their existing instruments that look at financial toxicity? Or is this built into existing PRO surveys? At the time when we started this, there actually was not. Dr. De Souza at the University of Chicago actually developed the cost measure, basically posted that after we had started with us. Having said that, and I love the cost measure. I think it's a fantastic. It's a nine question survey basically looking at grading financial toxicity. One of the things that we really were hoping to do with our primitive attempts at this was to find maybe one question things we can do in a busy clinic to try to identify high risk populations. And so with this one what we used was actually a statement from the PSUA team, which was, you have to pay for more medical care than you can afford. And then patients were asked to respond to the statement basically strongly agree, agree, uncertain, disagree, or strongly disagree. And we dichotomized them as basically exhibiting financial toxicity if you strongly or agreed with that statement, or not exhibiting financial toxicity with any other response. That sounds like a pretty clear and straightforward question. Was there like a free form portion where they could talk about, did this affect their ability to take their medicines, or go to doctor visits, things like that? There was. And we actually did a couple of different things. So we both did standardized questionnaires, so we did things like the fact GP, which is looking at multiple facets of patient well-being. We also looked at other health related quality of life issues. We also had developed our own access to health care questionnaire, which was looking at certain things like, were you having problems getting to your appointments? Are you being able to pay for your medications? We did several questions about paying for lab tests, paying for office visits. And then also, we really wanted to make sure that we knew if the reason you were missing these things was because of cost, or if there were other reasons. Because obviously, we don't want to attribute this all to cost if that's not what's causing the harm. OK, yeah. So it sounds like a lot of information gathered. So what did you find? In our study, we had almost 2,000 participants. And we had over a quarter, so 26% agreed or strongly agreed that they had to pay more for medical care than they could afford, which is in line with other studies. I would have thought it might have been higher than that. But it sounds like this is a nice validation that your survey was a pretty accurate instrument, even with such a simple question. Unfortunately, what we found is that when you take this population, the population that tells us that they are having financial toxicity by our definition, what we were finding was much higher rates of noncompliance. And that was a very scary thing when you're talking about cancer patients. Our patients who had reported financial toxicity were much more likely to report needing but unable to afford prescriptions, over-the-counter medications. They were also reporting noncompliance due to cost concerns for medical care like doctor's visits, medical tests, …