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Dec 21, 2018

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, mental health care. All these things for the majority of patients undergoing active chemo is a really scary thing.
And there's been some really good research in this area recently. There was a recent study where they were looking at imatinib and CML, and it found that individuals who had copayments greater than $53 a month were 70% more likely to discontinue within six months. So it's real world implications of this concept.
Absolutely. And were there any other factors that were associated with financial toxicity, things that you might be able to use to screen or predict for this?
In terms of the predictor, we basically validated what it had been thought of before, which is that there were certain factors that seem to be more predictive for exhibiting financial toxicity. The ones that we really know of are age less than 65 years, being non-white race, less education. All of those things had been previously described. It was nice to see with a large population model that we could validate those findings that would have been found in smaller studies. But it does seem that those patients are at much higher risk for financial difficulties.
Yeah, and the less than 65 is interesting to me. So I assume that that's probably related to Medicare coverage, that that somehow makes it less of a financial burden.
That's what it looks like. And I think that, obviously, Medicare is a nice protection for a lot of our patients over the age of 65, in that they don't see a lot of some of the costs our younger patients, especially our underinsured patients see. However, there was a recent study where individuals with cancer that were insured by Medicare alone were incurring mean out-of-pocket costs that were 1/4 of their household income. So I would say even though they have probably less bills for a lot of those patients, they're on fixed income. There is not other income coming in. So a lot of the folks over the age of 65 are still having financial toxicity even with the better insurance coverage.
Did you look at insurance coverage in this? Was that a variable in the analysis?
It was not. It was one of those things that when you go back and you wish you would have done it at the time. We felt like we had covered every single base. And it actually was a thing where we thought we were going to be able to pull that data from a database. But ultimately, we were unable to do it. It's now built into every model going forward. But we unfortunately did not have that data.
So you did a great job of identifying these patients and all the consequences of the financial toxicity. So what are we to take from this? Presumably, the idea would be to try to figure out a way to intervene on these patients. So what can we do?
Yeah, I think that, I mean, obviously, the first step is to identify the problem. And I think that that's always an issue. There's been multiple surveys of oncologists who feel it feels very wrong to discuss costs with patients. I think that we get very wrapped up in the science. And we have the latest and greatest drug that we just know is going to work. But obviously, drugs are getting more expensive plus all the treatment time and coming to and from the hospital, and basically outpatient versus inpatient chemotherapy. All these things need to be thought of when you're thinking about your treatment plans.
Having said that, once identified, if you're screening your patients for this, there are specific areas it seems like we can intervene. In our study, what we found was there were pretty interveneable reasons people were saying that they were having problems with their care. They include things like not having transportation, a lack of insurance, the inability to pay for travel. They can't take time off work. They don't have child care.
These are things that are specific issues that they're having, that with foundational support, with local and community support, you can usually intervene on. But you really do need to identify them. I know our group and the group out in Washington has done some research in the use of trained financial navigators to help patients. And that group in Washington has shown fantastic results saving a lot of money annually for these patients.
And in our group, we've also done things like treatment plans based on where you live. So can we get you treatment close to home? And if not, how can we get ride share? How can we get gas cards? Can we do things to help you?
And then also, I mean, again, there are actually a decent amount of foundational money out there if you're looking for it. There are groups out there that are there to help. But again, like I said, a lot of times, we just miss the problem.
Yeah. I mean, I know that I feel vastly unqualified to discuss costs of care with my patients. Oftentimes, I really don't even have a good idea of how much things cost. But it sounds like there ought to be a way to screen patients right up front beyond simply what their level of insurance is to see if they might benefit from these extra services. And then it's important for cancer centers to have these kind of interventions to be able to help provide with transport and identify patients who would benefit from that foundational help.
So I don't know how broadly available those kinds of services. I know we have them there. And your cancer center is actually run by our old boss, who used to run our cancer center, Dr. Raghavan. So I'm not surprised that you might have those as well. Is this something that is broadly available in oncology offices throughout the country?
It's not. I mean, honestly, it is not. And one of the things that I'm kind of one of my big pushes in terms of the research is that I think that everyone has their own issue that they're very passionate about. And I think that we could survey patients until the cows come home about different issues and try to identify patients at risk. And so one of things we've really tried to do is a couple of things.
Number one is to identify specific questions, especially in this case and some of our other studies, one or two question surveys where we can identify patients that are at very high risk for having these difficulties and identify that subset of population. And then one of the things that we're actually also working on in association with a couple other foundations and a couple of national organizations is we are actually hoping at some point to be able to start to roll out telemedicine, tele financial counseling basically and internet and other programs.
There's a pilot going on in Boston right now. There's another program we're going to be rolling out here in January, where we are trying to intervene on the problem even just from financial planning standpoint. There's a large amount of patients who it doesn't matter where you are in terms of your financial situation, financial planning is incredibly important. You could have a lot of money in the bank and good insurance, and then you get hit with a cancer diagnosis. And you're trying to figure out what you're going to do with your assets, versus a lot of our patients, which are you now can't work. And there's no money coming in. How are the bills going to be paid? How are you going to basic budget?
Again, I think this is going to resonate with everyone who treats cancer, no matter where you are. Because a big segment of our patients really struggle with this. And while it might not be immediately visible, if you dig down a little bit, it's not hard to find. Well, Greg, thanks so much for talking to me today.
Thank you.
And I also want to thank all our listeners out there who joined us for this podcast. The full text of the paper is available online now at in the November 2018 issue. This is Dr. Nate Pennell for the Journal of Oncology Practice signing off.