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Ashish Kamat: Hello, and welcome to UroToday's Bladder Cancer Center of Excellence. I'm Ashish Kamat, Professor of Urologic Oncology and Cancer Research at MD Anderson Cancer Center in Houston. And it is a great pleasure to welcome today, Dr. Deborah Kaye, who is an Assistant Professor of Surgery at Duke University, and who has a very interesting topic that she would like to share some insights with us, namely, financial toxicity amongst patients with bladder cancer.

Deborah, this is a topic that you discussed at the Think Tank. This is something that is at the forefront of everybody's minds, especially our patients. So we are all excited that you could take the time and share your insights with us. The stage is yours.

Deborah Kaye: Great. Thanks so much for having me, definitely a topic that I enjoy speaking about, and so thrilled to be here with you today.  So as Dr. Kamat introduced, I'm going to be speaking about financial toxicity amongst patients with bladder cancer.

So just a brief outline; we are going to go over just the costs of bladder cancer in general, a little bit about what is financial toxicity, and then focus on some of the research done on financial toxicity in bladder cancer.

So we know that bladder cancer has the highest lifetime treatment costs of all cancers. And this is really because of the long indolent force of bladder cancer. And how, when patients are diagnosed, once they are diagnosed, even if it's with non-muscle invasive disease, throughout their lifetime, we continue with surveillance, cystoscopies, and imaging.  So this is old data, but it is estimated that bladder cancer has expenditures of approximately $190,000 per case. And in 2010, a cost of approximately four billion dollars to treat. And once again, this is old data, so it's a lot worse today.

So that was just the cost often to Medicare, or to insurers, but there are also huge time costs associated with bladder cancer care. And so in using 2005 data, it was estimated that over a hundred million dollars of lost productivity annually for patients with bladder cancer. And these costs are really borne by patients, their families, and employers.

We also know that there is tremendous variation across physicians in the treatment of non-invasive bladder cancer. So in fact, physician treatment practices have a greater impact on the cost of care, than cancer stage or grade. We know, in a study from Hollenbeck and colleagues, using CR Medicare data from 1992 to 2002, that physicians in the highest quartile spent nearly three times as much for early-stage bladder cancer patients than those in the lowest quartile. And it's really important to realize that these are direct medical costs. So including indirect medical costs, such as time off of work, driving to appointments, those kinds of costs are not in these studies, and so will probably make that number even wider.

We know that all costs are significantly higher for certain physicians. There were no differences in mortality, or need for subsequent intervention. So really just focusing on that there is tremendous variation and some of the variations that we do, do not impact the care that patients get.

So really, I've used this term, financial toxicity. So what really is it?  We know that healthcare spending has grown much faster than the rest of the economy in recent decades. So as outlined in this data from the Centers for American Progress, between 1960 to 2010, wages increased by 16%, this bottom gray line, compared to national healthcare expenditures, that increased by 818%. And so that results in a large number of patients and families reporting financial distress. So roughly, about 37% of all US families report financial distress related to medical care.

So we know that the costs of healthcare are going up. The costs of cancer care are increasing, and patients are paying more out of pocket costs for cancer care. So we know that treatment is often overutilized. We know that the treatments are getting a lot more expensive, doing the newer drugs and the newer therapies and that these rising costs are passed onto the patient.  And so this really gets to this term, financial toxicity, which was a term coined in about 2013 by Zafar and colleagues. And it really is trying to describe the mental and emotional stress related to the burden of unaffordable cancer care. And it aims to describe both objective financial burden and subjective financial distress. And those are both key components of financial toxicity.

And so what do we know about patients who experience financial toxicity? We know that they have a poor or worsened quality of life. They have worse symptoms, worse health outcomes. They have treatment nonadherence and altered medication use, in order to make up for their medications. They have lower spending on necessary food and other necessary services. They report employment disruptions more frequently. They are more likely to become bankrupt and have earlier mortality. And then, patients who have increased financial toxicities also lead to increased racial and ethnic disparities.

And we also know that financial toxicity exists in spite of insurance coverage. So even patients with fantastic insurance coverage that are privately insured, experience financial toxicity.

So I spoke about this a little bit before, but we also have to remember, when we think about costs and cost to the patient, we have to think about both direct and indirect costs. And so direct is really out-of-pocket expenditures, what the patient and their families pay.  Indirect costs though can have a huge component and they are really understudied. But indirect costs can be related to lost productivity costs such as lost wages, or employment disruptions. Or hidden costs, that we often don't even think about; such as travel, parking, lodging, childcare, and loss of productivity of caretakers.

So what do we know about financial toxicity in the bladder cancer population? And there are really very, very few studies. And so the main one actually, came out of UNC-Chapel Hill. And this was a study that evaluated 138 patients out of their Comprehensive Cancer Center. And here, they found that about one in four patients with bladder cancer endorsed financial toxicity.  Participants who are younger, black, reported less than a college degree, or those who had non-invasive disease are more likely to report financial toxicity.  And they also found that patients with financial toxicity were more likely to report delays in care, although this was not statistically significant.

Reported patient-level factors for delays in care included an inability to afford general expenses, not being able to take time off of work, no childcare, and no transportation.  And then, patients with financial toxicity also reported worse physical and mental health, as well as lower cancer-specific quality of life. And this is similar to other studies in other cancer types.

So this was another study that used a validated COST questionnaire, which is one of the main validated questionnaires looking at financial toxicity. It is the comprehensive score for financial toxicity. And they surveyed about 230 patients with bladder cancer from the Bladder Cancer Advocacy Network.  Roughly, about 62% of these patients had non-muscle-invasive disease, and the median COST score was about 28, with a full range of zero to 44, which is the full range of COST scores.

And they found in a multivariable analysis that worse financial toxicity, again, was one associated with younger patients, lower household incomes, patients who were not retired, so they needed a salary for their household expenses and those without employer-paid or Medicare insurance.  And then they also explored with regards to financial discussions that two out of three patients really wanted their doctor to comprehensively discuss survival, side effects, and costs, in order to help them decide on a treatment that aligned with their preferences. And this preference was not sensitive to how much financial toxicity they reported.  And once again, they found that the worst financial toxicity was equivalent to lower quality of life.

The last study I'm going to just briefly talk about today, measured the prevalence of financial toxicity and associated factors among urologic cancer patients. And once again, looking at financial toxicity, and health-related quality of life.  Here, they did include prostate, bladder, or renal cancer. The study was out of Malaysia, and they looked at both objective and subjective financial toxicity.

And here, they found that the prevalence of subjective financial toxicity was actually much higher than that of objective financial toxicity. And this really indicates that even in patients without objective financial toxicity, they still may be experiencing subjective financial toxicity. And the worry and concern about the financial impact caused by cancer treatment could even emerge right upon diagnosis, without having faced any actual financial burden, because of this perception of burden and the direct and indirect costs of cancer care. And so it's really important to just keep this in mind when we are talking to our patients.

They also found, once again, both objective and subjective financial toxicity related to decreased quality of life. And subjective financial toxicity had actually, a greater influence on health-related quality of life, than objective financial toxicity.

So in summary; the costs of bladder cancer care are high; a large share of patients experiences financial toxicity; financial toxicity leads to worse outcomes, poor quality of life, bankruptcy, and mortality; and practice variation suggests opportunities for decreasing patient out-of-pocket costs. And while we did not get into specifics in this lecture, there are things we, as physicians, can do to help decrease financial toxicity.

Thank you.

Ashish Kamat: Thank you so much, Dr. Kaye. That was a very, very important topic that you just covered. And in some ways, you actually set yourself up for the question I'm going to ask you. Which is, what can we do?

Deborah Kaye: Yeah. So, it seems at times, we, as clinicians, can seem overwhelming. Right? We're trying to deal with so many different things. And honestly, it's really hard to get good cost data. And it's really hard to figure out what patients are going to have to incur, both in terms of direct and indirect costs.

When I think about what we can do, from a physician's perspective, directly related to our patients, I really think about it in four areas. And that's, awareness, and so doing things like listening to this presentation, and thinking about the real effects that our care recommendations, how our care recommendations can impact patients. So that includes, not ordering tests that won't change management. Or not doing procedures that won't change outcomes. Trying not to duplicate tests. Right? It's so much easier for me just to order another CT scan if I have to go chasing outside records. But really, taking the extra time to try and get all the outside studies, and just upload them into the system, and review them ourselves. It is just better patient care, or it can be.  Sometimes, obviously, we need to redo some of those studies.

And then, consider how our recommendations may impact both direct and indirect costs. So if our practice pattern is say, having someone have a study done, and then having them come back into the clinic to discuss the study, well, then they have to pay for parking, time off work, other stuff. So really just thinking about our workflows and how that can improve patient care.

The second factor is really in communication. The American Society of Clinical Oncology released a guidance statement affirming that physician-patient discussions on costs of treatment are really a critical component for high-value care.  But we know those cost discussions in oncology care are quite rare. But when they are had, conversations do lead to cost-reducing strategies in greater than 40% of cases. And we also know from the data that physicians influence treatment choice. And so with this in mind, we really have to discuss costs and patient values. Participating in joint decision-making is critical, and really assessing what the patients' goals of care are, outside of costs. Costs can be a really difficult thing to explore and uncomfortable. So treating costs really as a side effect of treatment, like patient-reported outcome data. And even if we don't know the exact costs. Right? They can be really hard to come by, we can discuss the potential direct and indirect costs of treatment. So discuss follow-up pathways, and when patients are going to have to come back in and just talk to some patients about the potential costs. Directing patients to other pharmacies, like mail-order pharmacies, where drugs may be less expensive, and directing patients early to potential resources.

And then, the last two categories which I will touch on are really screening and proactive financial counseling. Like we all know, the American College of Surgeons Commission on Cancer mandated overall distress screening and management, but there is really no similar recommendation for financial toxicity. But a lot of people are recommending that these cost conversations and screening for financial hardship should be a quality measure. And so while it's not a quality measure just yet, there are quite a few consensus bodies that think that even just screening for someone and being aware of these issues is critical for patient care.

And then the last one is proactive financial counseling. And that can be difficult depending on what system that you work with. But it's been shown that mostly in pilot studies, but patients who are proactively taught about their care, or understanding about what kind of costs they are going to experience become more informed consumers of healthcare, and they feel more empowered, and then report less financial toxicity.

So we know that these programs are feasible. We know they have led to improved quality of life, decreased anxiety, and patient reports of beneficial financial resources. There is still limited data on the actual impact on the financial burden and cancer outcomes, but hopefully, data will come out more on that topic coming up.

Ashish Kamat: That's a nice checklist. I was actually going to ask you a couple of follow-up questions, but you covered those yourself. It's almost like you were reading my mind. That's great. But so let me just ask you one thing. You gave a lot of practical tips that obviously physicians, and patients, and their caregivers, can follow, the reasons we need to obviously, address this very important topic. It's not just because we need to, but it's a very practical issue that affects so many people and affects the care that we can give them. Have you found that the action items that you outlined, I'm sure you implemented them yourselves, but have you found that it is easy, or not so easy, to implement this change amongst your colleagues?

Deborah Kaye: Yeah, so that's some work that I'm trying to do in our center. Right? And I think really, the first piece is the awareness piece. Just having people understand the real implications of financial toxicity. And that it's not just in terms of finances that, oh, maybe someone can make up down the road, but it really impacts the outcomes. Right? So if you prescribe a medication that someone can't afford, and they don't tell you they can't afford it, but they just don't take it, they are obviously not going to have as good of outcomes as if maybe you would have prescribed something that maybe would've been, maybe not quite as good, but they would have been able to take and manage.  And so the first thing is just, I've been trying to have my colleagues gain awareness about the issue, and understand that it doesn't have to be huge steps upfront. Right?

It's really hard, as we described, to really figure out what the costs are. I know when I first got to my institution and I was trying to find out some costs for all sorts of things, it was really, really challenging. But just having people understand that they can do small things. And I think those changes are starting to be made at my institution, and more generally. And then we are doing, I am doing, some more pointed intervention design work which will hopefully make this even easier, and broaden the scope even more.

Ashish Kamat: Right. We look forward to hearing how that has had an impact on the patients and your system. Bladder cancer, as you mentioned, is a perfect example where we have not only patients that need continued treatment with interventions and drugs, but of course, they oftentimes move. Right? Because they stay someplace in summer, then someplace in winter, or because they're long-term survivors, they do migrate and then repeat testing, and not having access to other people's tests is a real problem.

The other issue obviously is, without mentioning specifics, we all know of drugs that cost like $125, which are in short supply, and then drugs that are $10,000 each dose, which are plentifully available. And of course, that adds a whole other discussion that is more political than anything else. So we won't broach that topic today.

Again, I do want to thank you for taking the time. In closing, what is a high-level thought that you would want to instill into our viewers as to how they can actually do this in their day-to-day practice, first steps that you would recommend to take?

Deborah Kaye: Yeah. I really think it's just about awareness and communication. Right? Just even broaching the subject with patients, and sometimes it can be really uncomfortable because we don't want patients to think that you are going to give them suboptimal care if they can't afford it. But just putting it as a side effect of treatment, and having patients understand the time course and potential direct and indirect costs. I think that is the big thing. Just an awareness, and being open to communication about it. Because patients, the data shows, and my experience shows, that patients are generally very, very receptive to it, and they want it, and oftentimes, they don't really know how to ask or don't even know to really think about it.

Ashish Kamat: Great. Once again, Dr. Kaye, thank you so much for taking the time. It was a pleasure having you on. And stay safe and stay well.

Deborah Kaye: Thank you so much. It's great to be here.