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Ruchika Talwar: Hi, everyone. My name is Ruchika Talwar, and I'm coming to you from the American Urological Association's 2024 annual meeting in San Antonio. Today I'm joined by Dr. Justin Ziemba, who's an assistant professor of urology at the University of Pennsylvania. Dr. Ziemba is an expert in kidney stone disease but particularly has a research interest in health-related quality of life in stone formers. So that's what we'll be discussing today. Thanks for being here with us.

Justin Ziemba: Yeah, thanks for having me. Excited to speak about this topic.

Ruchika Talwar: Yeah, it's a really important topic. So let's set the stage for our audience a little bit. What exactly is health-related quality of life? What does that mean, and why is it important for kidney stone patients?

Justin Ziemba: Yeah, good question. So quality of life encompasses all those aspects of your everyday activities, how it impacts work, relationships with family and friends, pain, all those kinds of dimensions, and how your disease or other aspects of your life may interfere with those qualities that you think are important.

Ruchika Talwar: Yeah. And I think for kidney stone disease, it strikes me as being particularly relevant because maybe quality of life doesn't necessarily correlate with, for example, the stone burden the patient has. Tell me your thoughts on that.

Justin Ziemba: Yeah. I think that's important and why we're looking at it. Because traditionally, kidney stone research has focused mostly on those objective measures that we can capture in the medical record, like you said, stone volume, stone size, location, etc. And also the operative factors, right? Like what kind of surgery we did, and then did they come back to the emergency room.

But that's only a very small snapshot of what a patient with kidney stones may experience during their whole disease. And so we are trying to look at what is the total burden of the disease on their ability to do the things in life that they want to do. Like I said before, work, family relationships, those sorts of things. And particularly for kidney stone disease, we think of it for most people being either a really acute episode that lasts a relatively short period of time where we can capture things like pain.

But for many of them, there is recurrence and there are periods where they have quiescent disease activity. And for them, things like managing their symptoms or expectations about treatment or prevention and how we're doing in that aspect are not really well captured in the medical record. And also, we can use those quality of life measures to capture whether we are doing the right thing for them during that phase.

Ruchika Talwar: Yeah, yeah, that makes sense. What have you investigated in this realm so far? You've done a few studies, but just tell us a bit about what exactly your focus is here.

Justin Ziemba: Yeah. So we've done some longitudinal studies where we looked at patients following either observation or percutaneous procedures, ureteroscopy over the course of a year with multiple dimensions and looked to see how they recover after their surgery as well as for those patients where we just observed and didn't remove their stones. And by and large, across that year, people improved pretty steadily.

Not sure exactly why that might be for some of those, probably interaction with the healthcare system, with us understanding their disease, getting a diagnosis improved their overall quality of life. So that was one study, which was kind of the first to ever follow someone looking at this for a year period.

But the ones we've been mostly focusing on are post-ureteroscopy, post-percutaneous procedure in that 30-day window after surgery, looking at their recovery profile, specifically pain, which we know is a big aspect and a big part of the recovery, but also their social abilities and relationships with their family and friends in that recovery period.

Ruchika Talwar: Yeah. And oftentimes, I get the sense that what matters more to the patient than perhaps even how many times they need a procedure for recurrent stone disease, or if they need a stent versus not. So what have you learned in that regard?

Justin Ziemba: Yeah. I think that's definitely true. Like I said at the beginning, we focused only on those stone-free metrics, right? Which is really important for us as clinicians, but may not relate back to what the patient necessarily wants or feels.

Of course, it's important, so we can't neglect it, but at the same time, we need to probably bring on parity with that sort of measure is things like social recovery, knowing that in this amount of time you'll be able to go back to work, you'll be able to do the obligations that your family relies on you for, you'll be able to do social activities with your friends, and your bother from pain will be gone.

And I think those things matter a lot because on a day-to-day basis, they want to get back to doing what they normally do, and now we can confidently give them that information so they can plan before they have their procedure.

Ruchika Talwar: Yeah. And the other tricky thing about stone disease is often there are multiple procedures that can be used to treat the same patient, and the guidelines necessarily often equate them all on the same playing field. So all three options, for example, trial of passage, ureteroscopy, percutaneous procedures, in some cases they could all be reasonable. And so how has the data that you have collected in this area changed the way you perhaps counsel patients in those situations?

Justin Ziemba: Yeah. I think that's a great point. I think we know, particularly most of our data is on ureteroscopy procedures. We have some information on percutaneous as well, but ureteroscopy affects way more patients or is done more commonly. And I think from our data, I can reasonably tell patients their recovery profile, not only what they're going to experience, but the timeframe that they're going to experience it.

And so when they're thinking about the options between, let's say, a trial of passage, ureteroscopy, particularly for a non-obstructing kidney stone, once they sort of hear about that profile, they may say, "Okay, that's not something I want to deal with now. Maybe we'll deal with it at a different point in my life in the next year, two years." So I think traditionally those procedures have been differentiated by stone size or location, but now we can start adding in a little bit more shared decision-making because we have those patient outcomes that give them that ability to put that into their decision-making equation.

Ruchika Talwar: Yeah. And often these patients are young; it requires time away from work to have procedures. Particularly in the case of multiple stage procedures, it can be a real inconvenience. So this is information I think that is so important because we otherwise didn't have it. It's not in our guidelines, it's not in the literature. And patients ask us these questions and we don't have answers.

Justin Ziemba: Yeah, I agree. It's been tough up until we started working on this, I felt, to give patients an accurate idea of what the recovery is going to be like, and now I feel more comfortable telling them what that is. And our group is working on trying to make that a little bit more patient-friendly and figuring out how we can package that research information that shows the recovery profile into something that is easily readable or available online so they can look at it ahead of time or reference it in the recovery phase as well.

Ruchika Talwar: Yeah, absolutely. Really important work. So, what are the big takeaways as we wrap up that you want the urologic community to know?

Justin Ziemba: I think one is that we need to start including these types of patient-reported outcomes in all our research moving forward, particularly with obviously stone disease. And we need to start equating it in parity with those objective measures that we traditionally have used, like size, location, etc. So I think that's probably the most important point because as we accrue more data, we're going to be able to counsel patients better and also make our guidelines better.

I think the other important piece is that particularly for ureteroscopy, the recovery can be steep in those first few days, which was a highlight for me is that I now know that those first two days are probably going to be the worst for patients and I can counsel them. And I think that's a really powerful tool. And then we can tell them pretty confidently that their recovery's going to be after those two days relatively quick, within about seven to 14 days total. So I think those two points are really helpful. One for a research and policymaking aspect, but the other for an immediate practical implication.

Ruchika Talwar: Yeah, yeah. Well, congratulations on this incredibly important work. We look forward to seeing what else is in the pipeline for you and your group, and thanks for spending time with us today.

Justin Ziemba: Yes, I appreciate it. Thank you.