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Ruchika Talwar: Hi everyone. Welcome to UroToday's Center of Excellence in Health Policy. My name's Ruchika Talwar and I'm a urologic oncology fellow at Vanderbilt. It's my pleasure to bring you important health policy content that's put out by researchers within the urologic community. Today I'm joined by Dr. Wilcox Vanden Berg, who's a fellow in urologic oncology at Duke University. Thanks for joining us today.

Rand Wilcox Vanden Berg: Oh, the pleasure's all mine.

Ruchika Talwar: So we're going to be spending a little time talking about one of the research projects that you presented at the AUA's annual meeting, The Intersection of Insurance with Shared Decision Making for Advanced Prostate Cancer Care. Let's start out with a little bit of background. Tell us about what got you interested in this topic.

Rand Wilcox Vanden Berg: Yeah, so the decision making process that goes into how we as physicians treat our patients has really interested me, especially with how it relates to the access to care that patients have, which in my opinion goes to the quality of care. If you do not have access to something or the physician's not doing a good job, you're not getting your care. And I think we really need to find out how can we fix that. A lot of the work that you've done has done the exact same thing. It's like, how can we make it that patients are getting the maximum of what we know? And so looking at our literature, we have so much that we know, so much that could be applied to patients, but really these policy questions are kind of potentially getting in the way of actually allowing the patients to get to their full health at the end.

Ruchika Talwar: Yeah, I totally agree. And especially in this topic that you've tackled here, advanced prostate cancer care, we are seeing an explosion in the treatment regimens, both in novel agents, but actually quite often in combinations of different existing agents that end up having a survival benefit. But the question becomes, we can prove that there are benefits in trials, but how do we actually get the benefits to our patients in the setting of all of these policy barriers? So with that, tell me about what exactly you looked at here.

Rand Wilcox Vanden Berg: So what our project was, and I'll admit the principal investigator on this is Deborah Kaye, and this was funded by the SUL, one of the grants that she has, was looking at these discussions with clinicians. So there were semi-structured interviews that asked them, when you have a patient that has advanced prostate cancer, so metastatic castrate-resistant prostate cancer, how do you decide which of these six approved, back at that time it was these six, that approved medications that you're going to start them on? And so these were about 45 minute interviews. And one of the things that stuck out to me as I was going through all of the data was that there was this frustration that these physicians, because they were all physicians, eight of them were urologists, the rest were medical oncologists, there was this frustration that they were expressing and related to how they were able to make these decisions with the patients. And so that's why it's the intersection. It's not just like, hey, what can we do? It's, how is this actually working with the discussions that we're having with the patients?

And so anyway, we took this and we looked at it and we found that there are these four main outcomes, how they interacted. That this approval authorization process, when it was tackled again after discussing with the patient, finding out what they wanted, what they valued, looking at their comorbidities, which can affect what you prescribed. But these four main themes that emerged were that this process led to often delays. Actually, let me rephrase. Not often. Because it's hard in the qualitative setting to know exactly how often this is happening. But they weren't alone when they were mentioning this, that there are these delays that come from the process, that the process in itself can lead to financially motivated changes. So not medically, but let's emphasize financially motivated changes to this shared decision making process. And it was also associated with these physicians having dedicated staff in their practices that are needed in order to tackle the process. And often it was really, again, sorry, often, but it was associated with reliance on third party assistance to cover medication costs.

Ruchika Talwar: Really interesting. So everything that I'm hearing you say, these are all common themes I've heard. Again, I won't quantify either, but I've heard from many different types of providers in this space and things that I've actually personally experienced myself as well. So it's nice to be able to provide data. There's actually a lot of ongoing conversation right now up in CMS and in the federal government to tackle the prior authorization space. They're trying to put some limits on this burdensome process. And this is a space where I think it would be really meaningful to have data to take to them and say, "These four themes really drive clinician frustration." But the one thing that stands out to me is, I think it was your second point, that we then end up altering treatment regimens based on things like cost as opposed to what truly is best for the patient. So tell me more about that.

Rand Wilcox Vanden Berg: Yeah, so I'll have to preface this, because one of the things about qualitative research is you have to look at your bias and address it and know I have a bias in looking at this. And the bias where I come from is that the physicians that are tasked with treating these patients have gone through five to six years of training, at a minimum, sometimes more, in order to treat these patients. And a part of that is reading the literature and knowing how to apply it to the patient. And so when it comes to my thought process on this is like they're the expert. We have defined them as the expert. So then when you go through and you have these experts that are talking with the patients and saying, "Hey, tell me what is important to you?" A lot of the participants actually would say the patients couldn't miss work because they relied on their income. So that meant going in to get a weekly infusion might be out of the question. There were ones that really didn't want to get chemotherapy. So that was kind of out of the question, even though that sometimes is the least expensive for the insurance.

But regardless, they would talk with these patients, they would come up with something. They would go home, everybody is happy now that they've created this plan, but then they would have to call them back and say, "Hey, your insurance didn't approve it. You're not able to do this." Or, "Your insurance did approve it, but it is going to cost you this sum of money that you can't afford." And so these were the things, these financially motivated changes from, hey, you can't afford this, or you were originally able to afford it because maybe your deductible, this is one that actually came up with multiple people, your deductible has been met and now all of a sudden the year is over, your deductible's reset. You can no longer afford it and we're having to change.

Ruchika Talwar: This is all really, really interesting. I wonder, of the population of providers that you interviewed. You mentioned some were urologists, some were medical oncologists. Were they all from the same practice group or similar practice setting?

Rand Wilcox Vanden Berg: No, they were actually all across the United States. So about 70% of them were in an urban setting, 30% of them were rural. But yeah, they were all over.

Ruchika Talwar: Got it. So interesting. You're seeing common themes and common pain points from practitioners of diverse practices. So whether you're in a city, whether you're in an academic center, whether you're out in the community, these are common barriers that we really should focus on. I applaud you all for doing this important work, and I know you mentioned Dr. Kaye was the PI on this project. Tell me what can we as urologists learn from this data in our shared decision making with advanced prostate cancer patients?

Rand Wilcox Vanden Berg: So I think one of the big things is unfortunately how we're going to have to interact with the patients. Because we've spoken about the participants, this frustration with the participants. But one thing that hasn't been addressed is what frustrations does this lead to with the patient? How much of this potential thought of, which has come up in other studies of, "Oh, I am not worth this treatment. If I had more money, I could be treated for my cancer." How much of this is leading the frustration with them?

And so one of the things that we as clinicians will potentially need to take from this is how can we discuss with the patient and say like, "Hey, we're going to do our best, but we might get back to you and really address the emotional burden that's going to have with them, not just to say the financial toxicity that they're potentially going to have, which is another thing that obviously came up in this study, looking at a lot of the people were automatically referred to financial counseling. It was just crazy to me. But how can we address that emotional burden with them, but how can we also address that initial burden with ourselves?

So it takes a lot of time just to address all of this. You build a practice to say, "Hey, am I going to actually even take care of advanced prostate cancer because it itself is going to require me to hire extra people to get all of these resources," to have somebody that is willing to log in, and I think it was four o'clock in the morning in one of the situations, to find funds from a third party that will be able to help get these patients treatment? Otherwise, they're going to have to wait for those funds reset in a month, again, causing to these delays.

But anyway, we can learn from it to really find those frustration points, but then advocate for them to go away, even if it's something as simple and, as horrible as it's to say, but maybe we should be able to go in with a sheet of paper that says, "This is how much it will cost you," right at the beginning. Once we have now accepted as a field, or not us as a field, but more as a country, that this is going to be an important part of the shared decision making process, the costs, which some people have advocated for, that we should then have that piece of information when we go in. And so maybe we have to lobby for that.

But I think it's really, as you had said, not many people have looked into this. People have looked into treatments, the costs, but the qualitative method allows us to look at the actual behind the scenes, the frustrations that go with it. And now that we know that these frustrations are there, we know that they're shared, it will give us the tools to start addressing them and just saying like, "Hey, we need to do something."

Ruchika Talwar: I could not agree more. And I think this is important work. I think anecdotally, we've heard a lot about the stress and the resource burden that prior authorization places on practices and individual physicians. And I think we need data like this and studies like the one that you and Dr. Kaye have led here to allow us to push for common sense changes that provide better patient care. So again, I want to applaud you for this work, and thank you for taking the time to discuss it with us today.

Rand Wilcox Vanden Berg: Oh, no problem. Yeah, it's really not only just meaningful, I think for everybody, but it is great for us because we can learn from it, which is nice.

Ruchika Talwar: Absolutely. And thanks to our audience for joining us today in UroToday's Center of Health Policy Excellence. We look forward to bringing you more content in the future.