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Ruchika Talwar: Hi everyone, and welcome back to UroToday's Health Policy Center of Excellence. My name is Ruchika Talwar. For those of you who have been tuning into our series, patient-reported outcomes in quality of life are an increasingly important aspect of performance measurement as healthcare aims to be more value-focused. To that end, today, I'm joined by Dr. Niels Johnsen, who's a Reconstructive Urologist at Vanderbilt University Medical Center. He recently published a qualitative analysis in the Journal of Urology exploring patient experiences in recurrent urethral stricture disease. Dr. Johnsen, thanks for being here with us today.

Niels Johnsen: Thanks for having me, Ruchika. So, our study was, as you said, a Qualitative Analysis of Patient Experiences Reaching Urethroplasty for Recurrent Urethral Stricture Disease, which was recently just published in the Journal of Urology. And essentially, what we did was we put how patients are getting managed for urethral stricture in the context of the current AUA Urethral Stricture Guidelines that came out in 2016. And what these guidelines say is that surgeons should offer urethroplasty, instead of repeat endoscopic management, for patients with recurrent anterior urethral stricture disease. And that, if you don't do urethroplasty, you should refer patients to surgeons who do do urethroplasty. And what we find is that the majority of patients that we're seeing in practice on a day-to-day basis are often patients who have been managed in the community and non-tertiary referral centers and are often undergoing multiple endoscopic procedures before getting sent to us.

And there are a number of reasons why that's the case. When you look at stuff that Charles Osterberg did a few years ago, there's some benefit to doing these endoscopic procedures with lower costs and low complication rates. Urethroplasty is a little more complicated, and not everybody in the community feels comfortable doing these sorts of procedures. But, a study that we published about three years ago actually shows that urethroplasty utilization is, overall in the country, increasing. So, more and more providers are coming out into the community or around an academic practice who feel comfortable performing urethroplasties. And so, this is encouraging for us, based on those guidelines. But, what we are hoping to get a better understanding of through some qualitative methods, is what is the experience like for patients who are undergoing these repeat endoscopic procedures? It's easy for us as the surgeons to do the urethroplasty to say, "Hey, the best thing for you is to get a urethroplasty." But, do patients agree with that? Is there something that we are not understanding about the experience that maybe we can get a better understanding of?

And that's something that, doing traditional quantitative research, doesn't really give you the opportunity to really dive into and get that rich understanding of the patient experience. So, what we did was, we took 20 patients out of the last 100 or so urethroplasties that we had performed here at Vanderbilt and separated them into patients who underwent multiple endoscopic procedures prior to referral for urethroplasty, to those who didn't. So, multiple endoscopic procedures was just at least two or more because that was based on the AUA guideline recommendations. And we took a subset of patients who had had the multiple endoscopic procedures. About 20 patients, and then did these in-depth, semi-structured telephone interviews with them, to better understand the experience that they had in getting to urethroplasty, what sort of barriers that they felt like they had to cross, and how it feel like it impacted their quality of life in getting to the final surgery.

One of the interesting things that we saw, just in looking at the two groups, those who had the multiple endoscopic procedures, and those that didn't, is that there's a dramatic time difference to urethroplasty. So, that delay really played into the quality of life issues that a lot of patients described. So, we came up with the end game of this project, other than having just this really rich data in terms of quotes and experiences that patients described, which we have a whole, I think, couple of pages, that the Journal of Urology let us publish with quotes, which was pretty remarkable. But, we get this conceptual framework for understanding the patient experience and how all these different factors are at play in how it impacts decision-making and how they proceed to urethroplasty. And without getting too deep into it, there are a lot of things on the initial side, and later stages, that impact patient decision-making.

In the short run, to sum it up, there are provider factors. So, how patients are being counseled about available options, what they're told about available options, and how community providers are counseling them. And then there are some patient-level factors. And patient-level factors come with patients who,"Listen, I can't take two, three, four weeks off of work. I'm the sole provider at my household. I have to take care of my late mother or my elderly mother. Or, I can't take this time off of work because of the financial hit that I'll take for taking that time off."

So, we start to understand these more internal and external factors, patient, and provider factors, that are at play. So, while we often look at patients who undergo multiple endoscopic procedures as saying, "Hey, maybe this guy was mismanaged because they had five DVIUs before they came to urethroplasty, we could have helped him earlier. That may not necessarily be a provider problem. That may be a patient choice issue. And there are a lot of things that complicate the decision-making.

In the long run, granted, these were all patients that we interviewed, who ultimately got a urethroplasty. So, they got their definitive surgery. Patients wish they would've known about urethroplasty earlier and they wish they would've gotten it earlier. And in general, the strain and quality of life impairment and this unmet treatment expectations that they experience when undergoing these multiple endoscopic treatments really leads to a lot of quality of life dissatisfaction. And they much rather would've gotten there earlier. Granted, these are all patients who ended up reaching that end game. So, their opinion is a little different than the whole denominator. But, this study really gave us a lot of understanding from the patient perspective, rather from just our guideline recommendations, about how people work through the system and the clinical trajectory that they take.

Ruchika Talwar: Thank you. Dr. Johnsen. I think you brought up so many important points. It is beyond often what these patients, who are referred to high volume centers, have been told by prior urologists. A lot of times those barriers can be financial, as you mentioned. They can be things like driving distance to these Centers of Excellence. As you mentioned, time off of work, indirect financial burden. But I think it's really helpful once you have a body of work that actually characterizes significant improvement in quality of life, despite some of those barriers. It helps you counsel the patients when they bring up those concerns. So, tell me, how did these findings change the way you counsel your recurrent stricture disease patients?

Niels Johnsen: I thought of this more as a way to help us with referring provider and community provider referral patterns. So, we talk to patients and we say, "Hey, we know your success rate goes down with repeat endoscopic procedures and your quality of life tends to go down with that also. But, I think what's more valuable for this, or what I hope is more valuable, is, how do we disseminate this information to community providers who are really on the front lines treating a lot of these patients? Because, that's where most of the benefit is. We had a quote from a patient that said, "I live 80 miles from Vanderbilt," which would seem like a financial and logistical barrier to them accessing care here. But, once they'd had the urethroplasty, to say, "Hey, I wish I would've driven that 80 miles a year ago and taken care of this sooner because of the impact on my quality of life."

We know that patients, in general, tend to prefer having gotten to urethroplasty and had this fixed and not having to worry about, "When's the next time I'm going to go into retention? When's the next time I'm going to have to have a catheter put in?" But, on the flip side, how do we get some of this information to those who are actually seeing these patients on the front lines of your everyday urology clinic so that we can get them to make some of these referrals earlier if it is consistent with what the patients want. Because, that's another thing. A lot of these patients, they weren't ready. They weren't ready to come to urethroplasty earlier. And understanding where patients come from, I think, is an important part of this.

Ruchika Talwar: Absolutely. I think you only know what you know. And so, when you're hearing the same discussion from the referring urologist that you'll have to drive that 80-mile trip down to Nashville, it can be daunting. And as we know, 60% of counties in America don't even have a urologist. So, imagine the issues that some of our rural patients face. I know, obviously, Vanderbilt does have a rural population, but there are areas in the Midwest that just don't have a urologist for hundreds of miles. So, even seeing the initial community urologist, let alone the referral center, where the patient would have the urethroplasty, it becomes really challenging. What is your major takeaway that you would like the broader urologic community to know about your study?

Niels Johnsen: I think that we often think about repeat endoscopic management for urethral stricture in terms of success rates. So, we specifically picked people who didn't have high success rates, but that's not the point. So, I think we, in reconstructive urology, tend to be in the quality of life business. So, anything we can do to improve a patient's quality of life is what we're trying to do. And understanding the impacts of some of our management decision-making and the impact it has on a patient's quality of life is probably the most valuable thing we can do. We want to be highly successful and highly improve patients' quality of life. And so, knowing that running patients through this gauntlet of multiple procedures over time is not consistent with many of their quality of life goals, and so, making sure that they are aware of alternative treatment therapies, I think, is important earlier on in the disease process.

Ruchika Talwar: It's very true. Thank you for spending some time with us today. We really appreciate it.

Niels Johnsen: Thank you so much. Loved to have been here.

Ruchika Talwar: And to our audience, we'll see you next time.