Patient Burdens and Openness to In-Home Intravesical Therapy for Bladder Cancer – Timothy Lyon & Amanda Myers

Sam Chang: Hi, I’m Sam Chang. I’m a urologist in Nashville, Tennessee, and we have the great honor to have two leaders in bladder cancer when it comes to urologic oncology. We have two individuals that actually are currently associated with Mayo, Jacksonville, and formerly associated with Mayo, Jacksonville. First, we have Dr. Amanda Myers. Dr. Myers is currently a fellow in urologic oncology at the MD Anderson Cancer Center in Houston, Texas, and we have Dr. Tim Lyon. I’ve known Tim for quite a few years. Tim is actually an attending at the Mayo Clinic in Jacksonville and has helped actually bring a few individuals together to look at a project kind of emphasizing and giving us more information regarding the burdens of care, specifically with intravesical therapy when it comes to bladder cancer patients. This is an area that I personally have great interest in, and I know that it really represents a significant burden to many of our patients. So we’ll turn this over to Dr. Myers, who’s going to give us a short presentation based upon their manuscript from urologic oncology. Dr. Myers.

Amanda Myers: Thank you for having us today. We’re so excited to talk about our study, Patient Reported Treatment Burden and Attitudes towards In-Home Intravesical Therapy among Patients with Bladder Cancer.

As we know, intravesical therapy is time-intensive. For induction, it’s weekly for six weeks, and intravesical therapy is also not widely available. Patients and caregivers are frequently required to make arrangements to travel long distances to receive treatment. As healthcare is becoming more decentralized with less care being delivered at the hospital and clinic and more care being offered in patients’ homes, would it be possible to deliver BCG this way? While the first step was to gain a better understanding of the treatment burden experienced by patients as there’s very little data on this, and determine if in-home therapy would be of interest to patients or how patients would feel about medications being brought into their homes. So we conducted a cross-sectional survey delivered to patients through the BCAN Patient Survey Network.

Questions were developed by investigators, interleave-risen, and improved with feedback from bladder cancer experts and patient advocates at the 2021 BCAN meeting. We had 233 respondents with over 50% reporting travel distances greater than 30 minutes to receive treatment. And even some patients traveled over two hours per trip. A third of patients reported personal out-of-pocket costs greater than $25 associated with each trip, which would be even higher in today’s dollars when accounting for inflation. Over half of patients reported treatment adversely affecting their ability to perform daily activities. Missing work was reported by 36%, and of those who missed work, the majority, 70%, actually missed a half-day, four hours or more. 56% of patients brought caregivers to their appointments and more than half of patients reported spending over two hours and some, 18%, spending over four hours per treatment.

Overall, 72% reported openness to in-home intravesical therapy and the patient views are summarized here. 27% felt that in-home installation would reduce their anxiety around receiving treatment and over half felt it would make treatment less disruptive to their life. Importantly, the overwhelming majority reported they would feel safe with in-home treatment.

In conclusion, intravesical therapy is burdensome and patients reported considerable travel distances, time requirements, out-of-pocket costs, and the need for caregiver support. 74% were open to in-home treatment and further work is ongoing to assess the feasibility and efficacy in reducing such burdens. We’re very thankful to the patients who participated and to the support from BCAN and beyond, who made this work possible.

Sam Chang: Dr. Myers, great presentation, really a timely one where actually a lot of hospitals, a lot of large cancer centers are looking at a transition from inpatient to hospital to home type of therapy. It only makes sense that something that we do on an outpatient basis, we facilitate its role. We’ve got telemedicine, we’ve got different things to try to bring care actually to patients as opposed to patients having to make the journey and the burden of care that this manuscript outlines so well. So, I want to say fantastic job, obviously senior leadership by Dr. Lyon.

I’m going to start off with a question to Tim first. Tim, as you and others in the BCAN group came together and thought of this project, what other possible burdens of care did you all notice? I mean, you’ve got intravesical treatment. Are there other things that you all considered examining as well?

Timothy Lyon: Yeah, I think one of the ideas we were really trying to get at was this concept of time toxicity of cancer therapy. I think as clinicians we’re very familiar talking through the drug side effects, the medical toxicities of our treatments. I think there’s a growing awareness of the financial toxicity, but we are really interested in the concept of time toxicity. And what that means is all the time required to coordinate, receive, and then have any follow-up for their cancer care. So that includes making appointments, traveling back and forth, actually receiving the treatment, getting any necessary follow-up CT scans or lab work or any of those unscheduled visits for side effects. Say, I’ve got some urinary symptoms. I need to run to the urgent care. All of those things take our patients away from living their normal daily lives, working, spending time with their family. So those were the concepts we were trying to get at a little bit with these survey questions.

Sam Chang: Yeah, I think clearly there’s an issue and requirement of safety first and making sure that we continue efficacy. As you consider this project, Amanda, and saw the data, what are your initial thoughts of where do we go next with this? Is it going to be educational videos? Is it going to be actually starting to implement a program? Where do you think we’ll go next with this possibility of intravesical therapy at home?

Amanda Myers: So, I think that patients are open to the idea, and I do think, especially with new patients who may not be familiar with intravesical therapy, education and I think their physician supporting the idea will encourage them to want to proceed with it, and that’s going to be the key factor is the physician buy-in and that will drive the patient buy-in.

Sam Chang: Tim, at Mayo, Jacksonville, and actually at all the Mayo clinics, clearly Mayo is the epitome of patient-centered care. What are some of the initiatives that you all have there to help patients as they begin intravesical therapy for their non-muscle invasive bladder cancer? Maybe some tips that other either practices or individuals can utilize to help patients prepare for treatment.

Timothy Lyon: Well, whenever we discuss starting an intravesical therapy with patients, we think it’s important to outline the whole potential episode of care. Meaning, we talk to them not only about the induction therapy but the planned maintenance if it is effective and continues, so they can start to help wrap their head around how much treatment we’re talking about, how many times they may need to travel back and forth. We do have some online videos with patients going through the process of what the in-clinic treatments will look like and what some of the common side effects will be. So I think those are the important things, is outlining the landscape of what they’re going to be going through and then some day-to-day impact when they’re here in the clinic.

Sam Chang: Yeah, I think that two-pronged approach is really essential. The idea of the overall treatment of what’s ahead, but then the nitty-gritty of what actually happens when you get the first treatment. And so, what we’ve done with the help of our nurse practitioners and our team is set up just as you said, separate videos. Here’s your first day and we call it our installation clinic. Here’s your first day. Where do you go? This is where you leave your sample off. This is what’s going to happen. This is what a catheter looks like. This is what the room looks like. And the patients who have never had a treatment for, they actually very much appreciate it. And actually those that have come from elsewhere have said just that, “I wish I’d seen that video the very first time.” I think is really important. But then secondly, exactly what you say of, “Look, this is probably not going to be the only treatment you have. There’s going to be a continuation of surveillance and then other therapies.” I think is really, really important.

Dr. Myers, you’re currently doing, I think, your research year at MD Anderson and, as you see, and I’m sure see all these different patients that travel far, far away to receive care there. When you look at the burden of care for these patients with non-muscle invasive bladder cancer, tell me, as you consider what they’re going through, what really concerns them the most? Is it the cancer? Is it the cost? Is it the treatment itself? It’s a combination of all those things. Tell me what really strikes with patients.

Amanda Myers: When it comes to bladder cancer, I think patients really just want to live, and that fear of cancer really drives a lot of their decision-making, and it is our job to kind of ease that anxiety and kind of go through the treatment plan and what the expected outcomes are for the patients and also offer… I think one of the issues is that they have to come so far to receive their treatment because they may not have these therapies available in other areas. So having to come all that way, come to a big cancer center, may actually be increasing their anxiety and their burden of not being able to receive the treatment closer to home.

Sam Chang: Now we look forward to actually both of you all’s contributions in terms of where we go now with the next steps. Do we actually start implementing an intravesical therapy plan at home? You can see with some of the newer agents with not as many treatments. Boy, it would really make sense. On the same time, the logistics will become, I think, perhaps even more difficult with viral therapies, with a combination of disposables, of how you dispose of these agents. All those things come into play, but if we can do anything to decrease the burden, I think on patient care, everyone will appreciate the efficiency, and clinic will improve. Patient care obviously would continue to be paramount. And then the ability to actually then kind of control your schedule, just as you said, Dr. Lyon, regarding that time toxicity. I think that is underappreciated by all of us, I think by clinicians especially. And so we thank you both very much for your contribution and your continued efforts with BCAN, and we look forward to seeing what the next steps are as we try to help improve care for our bladder cancer patients. So thanks again.

Timothy Lyon: Very good.

Amanda Myers: Thank you.