Tullika Garg: So I just found early in my practice taking care of these older patients... The median age at diagnosis of bladder cancer is 73, it's the highest of all cancer sites, and I found in taking care of my patients and hearing their stories that the burdens around bladder cancer treatment were incredible for them. When we think-
Sam Chang: And probably underappreciated by physicians.
Tullika Garg: By us, for sure.
Sam Chang: Absolutely. Yeah.
Tullika Garg: And so in hearing these stories, when you think about high-risk non-muscle-invasive bladder cancer, we're talking about up to 19 visits or more per year just in urology for treating based on the guidelines. And so hearing these stories, my patients would tell me about how difficult it was for them to get back and forth to appointments. And particularly if we think about non-muscle-invasive bladder cancer as a chronic disease with recurrences and additional treatments and surgeries, the cumulative effect was a lot for these patients, especially as they became more frail and were dealing with other coexisting chronic conditions. And so I became really interested in this concept of treatment burden, which is this tension between the amount of healthcare workload that we're asking our patients to accomplish and the resources and the capacity that they have to successfully accomplish that work.
And when the tension is overloaded, the patients experience more difficulty with treatment adherence, more hospitalizations and more disease exacerbations. And so I have pursued this line of work as a result of these stories from my patients. In this particular project, we were looking at a goal elicitation and communication tool called Patient Priorities Care, which has come out of treatment burden work in geriatrics and in multi-morbidity. A lot of it has come out of the diabetes, heart failure disease space. And so we looked at adapting this communication tool for older adults with non-muscle-invasive bladder cancer.
So we did a small pilot study where we gave the tool to patients, it's just a little booklet that they fill out with questions, and telling us what is most important to them, what they're most worried about, what they're hoping a treatment could accomplish for them. And we had the urologists that they were paired with look at the booklet before a clinic visit and then they had a conversation. We recorded the conversations. And then we interviewed the patients and the urologists afterwards to ask them what they thought about it and what they thought about their conversation. So it was a pretty interesting study.
Sam Chang: So what were your biggest takeaways?
Tullika Garg: A couple different things. First is that both patients and urologists like tools that are shorter, that are very focused, that have more checklists versus free hand writing. So we made some adaptations based on that. We also found that although the decisions that were made during the conversations didn't really deviate from what probably would have happened anyways, it helped the urologists to learn more about their patients and what was important to them, and it shifted their mindset in terms of how they approached the conversation and it also shifted what they knew about their patient and how the conversations would go going forward. Even though the decisions maybe weren't different, the way that the two engaged in the conversation changed.
Sam Chang: I think the fact that you started off with the statement of 19 visits, that's never been made clear to me more than what you just said now about... Oh my gosh. Because for the treating physician, it is, "Oh, somebody's on my schedule." "Oh, good to see you again." No idea in the treatments that they're getting, the evaluation, the survey. So I think by understanding from the patient's perspective, it's got to be an eye-opening for the physician. But then you balance that though with the risk of the disease. For me, clearly the higher the risk of the disease, I think everybody's more accepting of a higher treatment burden.
I think we have to do a better job with the low risk disease or lower risk disease of de-escalating care. It's back to the whole moreism of are we doing enough in the time or are we doing too much when we really shouldn't be? So how do you now take this into practice and with your partners, et cetera, and for all practicing urologists, where do we go next? How do you help enlighten us, the treating physicians? Tell us your next steps.
Tullika Garg: I think understanding each patient's goals and healthcare preferences and understanding that they can evolve over time over this very long disease course is really important, and finding a way to communicate those goals and preferences to the treating urologist is also, I think, an important part of it. And that's what we're hoping to accomplish with this tool is really just to make sure that everybody is very clear on what the preferences are and that this is something that's going to be an ongoing conversation over time at each decision point. And I think we can see tools like this as a way to talk about conversations like de-escalating care or de-intensifying surveillance, or choosing between some of this large menu of treatments that we're dealing with now and looking at the specific burdens and how they might fit into a patient's existing burden.
So are we looking at a treatment that could be given once every three months versus something that's given weekly? Are we looking at something that is going to avoid a general anesthetic to do a transurethral resection versus coming into clinic once a week to have something put into the bladder?
Sam Chang: It's a good kind of tension to have in some aspects because 10 years ago we didn't have a lot of options. It was this is what it was, this is what we know that works. Now we have a better understanding dependent upon the disease of we've got a lot of different options. So I can see and I look forward to, as you all do more research, we have similar tools like this we use for prostate cancer patients where we fill out and we know, okay, this is what's really important to them, it's continence, it's sexual function, it's longevity. So that helps us in terms of our discussion regarding radiation versus active surveillance versus et cetera. I can see a tool like this becoming very important for our patients with non-muscle-invasive bladder cancer in understanding what is important, what is the burden, what do we want to achieve, and so we look forward to our next step. So what are you all planning on doing next in terms of the research in this area?
Tullika Garg: We're doing some focus groups right now and also including informal care partners, so husbands, wives, adult children, because their perspective and their involvement in the decision-making is also really important.
Sam Chang: Especially as patients get older.
Tullika Garg: Absolutely.
Sam Chang: That team approach, the family approach is really influential and important.
Tullika Garg: Yeah. So we're trying to get their perspectives, we're trying to gain some more perspectives from urologists and from patients to adapt the tool further, and we're ultimately hoping to test it in a prospective study.
Sam Chang: Fantastic. No, we look forward to that so much, Tullika. So it's always great to catch up with you.
Tullika Garg: You too.
Sam Chang: And we look forward to as this tool progresses as you learn more from the different stakeholders, please spend some time with us. So we want to hear what's next, what you all found and how perhaps, like you said, we could set up a larger prospective trial looking at using this beneficially for our patients and their families. Thanks again, Tullika. Great seeing you.
Tullika Garg: Oh, thank you. You too, Sam.