Working Group Addresses Excellence in Community Bladder Cancer Care Delivery - Janet Kukreja
November 8, 2024
Ashish Kamat speaks with Janet Kukreja about a working group session at the BCAN Think Tank, focusing on establishing excellence in community-based bladder cancer care. The discussion explores findings from a collaboration between BCAN and the Association of Cancer Care Centers, highlighting challenges faced by community practices in delivering comprehensive bladder cancer treatment. Key issues include intravesical therapy stewardship, BCG management, access to radical cystectomy services, and coordination of multidisciplinary care. Dr. Kukreja emphasizes the importance of physician champions, nursing support, and strong relationships between specialties to create successful community programs. The conversation addresses the need to balance local care accessibility with the challenges of complex procedures like radical cystectomy, while acknowledging that some aspects of care may need to remain centralized at tertiary centers to maintain quality standards.
Biographies:
Janet Kukreja, MD, Urologic Oncologist, Associate Professor of Urology, University of Colorado, Denver, CO
Ashish Kamat, MD, MBBS, Professor of Urology and Wayne B. Duddleston Professor of Cancer Research, University of Texas, MD Anderson Cancer Center, Houston, TX
Biographies:
Janet Kukreja, MD, Urologic Oncologist, Associate Professor of Urology, University of Colorado, Denver, CO
Ashish Kamat, MD, MBBS, Professor of Urology and Wayne B. Duddleston Professor of Cancer Research, University of Texas, MD Anderson Cancer Center, Houston, TX
Related Content:
Supportive Care in Bladder Cancer: A Deep Dive into Global Patient Needs and the Role of Healthcare Professionals - Bente Jensen & Alex Filicevas
BCANTT 2024: Identifying Individual and Community-Level Drivers of Disparities in Bladder Cancer Clinical Trials Participation
Empowering Bladder Cancer Care: A Formal Partnership between IBCG and UroToday in the Era of Expanding Therapies
Supportive Care in Bladder Cancer: A Deep Dive into Global Patient Needs and the Role of Healthcare Professionals - Bente Jensen & Alex Filicevas
BCANTT 2024: Identifying Individual and Community-Level Drivers of Disparities in Bladder Cancer Clinical Trials Participation
Empowering Bladder Cancer Care: A Formal Partnership between IBCG and UroToday in the Era of Expanding Therapies
Read the Full Video Transcript
Ashish Kamat: Hello, everyone, and welcome to UroToday's Bladder Cancer Center of Excellence. I'm Ashish Kamat, and it's a pleasure to welcome to the forum once again Professor Janet Kukreja, who is joining us today to talk to us about a working group session that she led at the Think Tank that concluded a couple of months ago. This is an exciting working group session that she led, and essentially it talks about how to essentially have excellence in bladder cancer care in the community and went into the discussion about different components for success. So Janet, thank you again for taking the time, and please enlighten us.
Janet Kukreja: Yeah, my pleasure. Thank you so much for having me. I think this is a really important topic. I just want to start off by saying a lot of this work was spearheaded by the group that's listed here. Suzanne Merrill deserves all the credit for the vast majority of this. She works with Manoj Bupathi. Gautam Jayram was also on the panel, and Craig Smith is an advocate. They really made up a lot of this session and worked on a lot of this session.
So kind of a little bit of the presentation outline, so we'll talk about a little bit of the background of this. This is part of a larger BCAN project, the working group that led to this breakout session, some gaps and lessons that were learned.
So BCAN embarked on a collaboration with the Association of Cancer Care Centers. So historically, community practices have faced a lot of barriers when it comes to bladder cancer. Bladder cancer requires a full spectrum of care, all the way from diagnosis to treatment. And a lot of times that happens in the office of community providers. When we look at the spectrum of who provides care for patients, the vast majority of patients are seeing community providers and are not going to academic centers for their initial diagnosis and treatments. When patients do go to academic centers, a lot of times it requires a ton of travel. A lot of patients live in smaller areas, rural areas, and travel to large academic centers can be quite challenging. So currently, some community centers have been able to overcome these barriers and are successfully delivering the full spectrum of care, but patients really do remain challenged in where they can go and where they can seek care.
So this collaboration put together a survey, and this survey kind of spanned the whole spectrum of bladder cancer and included urologists and medical oncologists to try and better understand how bladder cancer is being treated across the country. This is something that Dr. Merrill put together and has been working on for quite some time. So it asked providers who do bladder cancer where they were working, what organization they were working for. So you can see private group, and they broke it down to private group and community practice. You can see they're seeing a large portion of patients, and only 38% were going to academic or NCI cancer centers. The VA number is 5% and then we have other at 4%.
And then, where are the patients being treated? So all of these providers, so about a quarter in suburbia and a lot of people are in urban areas, and so that kind of speaks to patients that are in rural areas are having a much, much harder time getting treated. Only 8% of providers are in rural areas or go to rural areas. There are some providers that do travel to other offices. And then bladder cancer patient volume. So this is the whole spectrum of disease. This is people that are on surveillance, new diagnoses, all that. So you can see there's actually a broad disbursement between how many patients people are seeing per year.
So the working group, they actually had a two-day summit that focused on keys of excellence, and this was actually just held a couple of weeks ago, for bladder cancer care in the community. What they focused on at this summit were, what are some examples of excellence in academic settings that can be translated to the community? This is kind of what I spoke to a lot at our session at BCAN. What are some things that patients really like? We talked about that patients really like often that they can see multiple people at one place. So for Suzanne and Manoj, they are at physically different separate places. A lot of times, at academic settings, people are in the same place, and that's something that patients really like.
Other things that we talked about were kind of the spectrum of things that we can offer as far as intravesical treatments for patients. A lot of times, smaller community practices or private practices have a harder time offering intravesical treatments. I'll talk a little bit more about this, but I think specifically when we start talking about the more pricey things, it can be much harder for community practices to take on that risk. They focused on what strategies they can implement to scale up community centers and what barriers exist. They involved APPs, medical oncologists, nurse navigators, pharmacists, radiation oncologists, social workers, urologists, and importantly, patients.
So some gaps and lessons that we talked about at our session. It was really interesting. We talked a lot about intravesical stewardship. So in community practice, they talked a lot about patients just receiving BCG, BCG, BCG, and they talked about for larger community practices, having a centralized database of where BCG is going and what patients are getting what, and really doing an intravesical stewardship. So kind of trying to shift some of that BCG to maybe other types of treatments. And then management of BCG failures. I think a lot of it has to do with the next bullet, is that a lot of community providers do not offer cystectomy. But management of BCG failures is a huge challenge.
Once BCG is kind of taken its course and if patients don't respond to it, the options start to become cystectomy, gemcitabine-docetaxel with it, which they have a hard time in the community administering because of how it has to be mixed. And then the expense of getting some of the other agents can be quite a lot. When they go out to do this, they take on a lot of risk when they purchase this because they don't get the money back until they administer all of the doses and then bill the insurance companies. So if a patient doesn't show up or a patient disappears, something like that, that's a lot of risk for especially a small practice to take on.
And then cystectomy, this obviously can be quite challenging to manage the patients. It can be challenging to round on patients, have adequate care in the hospital, adequate ICU coverage if necessary. And then I don't know that I can underscore this enough, the nursing support as outpatients for them to provide all the care that they need, ostomy, and just the day-to-day care. And then multidisciplinary care, getting them seen by medical oncologists, radiation oncologists, and a urologist all in a timely coordinated manner can be very difficult. They talked a little bit about site of service billing. Patient navigation, they don't have a lot of financial support for patient navigation. And then the financial risks.
So some lessons that they talked about, kind of moving some of the care to the community and creating an academic environment, but calling it a bladder cancer community excellence is really having a champion, having a physician champion and a nursing champion, and really people that believe strongly in developing this. BCG registry with review was quite important to address that intravesical stewardship gap. And then really developing meaningful relationships with medical oncology and radiation oncology. That's something I think, as an academic provider, I take for granted, the relationships that I have with my medical oncologists. I just walk over to their room that's literally like 10 steps from my room and I ask them a question. I think for urologists in the community, it's much more isolated than that, and the same goes for radiation oncology.
So in summary, I think that there is absolutely tremendous opportunity to create community bladder cancer care excellence. I think that this is something that these working groups have been working on in a very thoughtful manner on how to expand options for patients. Some of the barriers that they talked about are not so different from academic medicine. We have a problem with BCG usage and shortage and stuff the same. We have problems that even cancer centers don't want to front money for some of these more advanced therapies for BCG unresponsive bladder cancers. So I think we also face some of the same struggles, and it's not as different as maybe it once was. And there's still a lot of learning to be done on how to take this into the community and expand this even more beyond community centers in urban areas. There are community centers that are rural too, and having those options for patients can be quite helpful to patients not having to travel far distances.
So take-home messages, community care will really help define this excellence in bladder cancer care and the delivery in the community. And this working group will continue to work on these issues. Patients still struggle to find resources for bladder cancer care, and BCG stewardship has led to a lot of success in community urology.
Ashish Kamat: Thank you so much, Janet. I mean, it's a very important endeavor that the working group has embarked on because we often face this dilemma when patients come to see us, they come to see you, they come to see our colleagues in the referral centers, but then they have to have their family, whether it's their son, grandson, daughter, granddaughter, take time off and they can't come for every visit then. We've seen all the published data where less than 40% of patients in the US who need care for their bladder cancer actually get it in the first place. And then amongst those who get it, not many of them follow up and keep up with the referral. So I think this is a very commendable effort and a laudable goal. Some quick high-level thoughts from you on the role of home intravesical delivery. I don't know if that was discussed at the working group. Any thoughts about that? Because that's been published by a few people as to something that's feasible and doable.
Janet Kukreja: Yeah, we did not talk about that at all during this session, but I agree with you that is something for some of these patients where that could really bridge that gap that you were just talking about. I think we'll see a lot more to come as we continue to investigate even more agents that can do that. But yes, I think that is an excellent point that can bridge the gap of this care.
Ashish Kamat: I think it's something for BCAN, for sure, and also organizations like IBCG to sort of use our network of providers and try to get some regulations passed that would allow people to send nurses to the patient's home without all the red tape that goes with it.
Now, when it comes to radical cystectomy, I mean we're seeing more and more data being submitted to the American board where people are forgetting how to do radical cystectomy because it's just so time-consuming and it doesn't pay right, the hospital or the physician. Any thoughts amongst your working group as to whether the community colleagues should just say, "Well, this isn't worth our time, just honestly, practically speaking," and for that at least, the patient should be referred to the tertiary center? Or is there an effort to try to get more community urologists to want to do these procedures?
Janet Kukreja: Yeah. Yes, absolutely, excellent point. So I think what we discussed, and I think you also have to take a perspective of who was on our panel too. So our panel was made up of all urologists that do cystectomies, and I think at a fairly high volume. So two of them are community practice. I think that while they are not academic, they are still at tertiary centers. So some of this is, how do you function in tandem at a big academic center and a tertiary private practice hospital? So Suzanne and I both practice in the Denver metro area and we do share patients back and forth. So I think a lot of it is a collaboration between those urologists who do want to do cystectomies.
And I agree with you, you really don't want a urologist that does one or two a year. You really want somebody who is well-versed in the operation. And I think there is still going to be centralized care at tertiary centers for cystectomies because of the whole spectrum of issues. One, urologist comfort level; two, all the people around the patient during the hospitalization and then the follow-up care. General urology office that sees every diagnosis of general urology doesn't necessarily pay attention to the patient that had a cystectomy three weeks ago that's calling with a fever and understand the importance of that. So I think the centralized care for that is still critical to the care of a patient with bladder cancer.
Ashish Kamat: Yeah, very well said. Again, very important effort. I'm really looking forward to seeing what develops over the year and what you all talk about at the Think Tank next year in August. So once again, Janet, in the interest of time, we'll need to close this, but I'm sure we'll hear more from you in the next several months. Thank you once again.
Janet Kukreja: Sounds good. Thank you.
Ashish Kamat: Hello, everyone, and welcome to UroToday's Bladder Cancer Center of Excellence. I'm Ashish Kamat, and it's a pleasure to welcome to the forum once again Professor Janet Kukreja, who is joining us today to talk to us about a working group session that she led at the Think Tank that concluded a couple of months ago. This is an exciting working group session that she led, and essentially it talks about how to essentially have excellence in bladder cancer care in the community and went into the discussion about different components for success. So Janet, thank you again for taking the time, and please enlighten us.
Janet Kukreja: Yeah, my pleasure. Thank you so much for having me. I think this is a really important topic. I just want to start off by saying a lot of this work was spearheaded by the group that's listed here. Suzanne Merrill deserves all the credit for the vast majority of this. She works with Manoj Bupathi. Gautam Jayram was also on the panel, and Craig Smith is an advocate. They really made up a lot of this session and worked on a lot of this session.
So kind of a little bit of the presentation outline, so we'll talk about a little bit of the background of this. This is part of a larger BCAN project, the working group that led to this breakout session, some gaps and lessons that were learned.
So BCAN embarked on a collaboration with the Association of Cancer Care Centers. So historically, community practices have faced a lot of barriers when it comes to bladder cancer. Bladder cancer requires a full spectrum of care, all the way from diagnosis to treatment. And a lot of times that happens in the office of community providers. When we look at the spectrum of who provides care for patients, the vast majority of patients are seeing community providers and are not going to academic centers for their initial diagnosis and treatments. When patients do go to academic centers, a lot of times it requires a ton of travel. A lot of patients live in smaller areas, rural areas, and travel to large academic centers can be quite challenging. So currently, some community centers have been able to overcome these barriers and are successfully delivering the full spectrum of care, but patients really do remain challenged in where they can go and where they can seek care.
So this collaboration put together a survey, and this survey kind of spanned the whole spectrum of bladder cancer and included urologists and medical oncologists to try and better understand how bladder cancer is being treated across the country. This is something that Dr. Merrill put together and has been working on for quite some time. So it asked providers who do bladder cancer where they were working, what organization they were working for. So you can see private group, and they broke it down to private group and community practice. You can see they're seeing a large portion of patients, and only 38% were going to academic or NCI cancer centers. The VA number is 5% and then we have other at 4%.
And then, where are the patients being treated? So all of these providers, so about a quarter in suburbia and a lot of people are in urban areas, and so that kind of speaks to patients that are in rural areas are having a much, much harder time getting treated. Only 8% of providers are in rural areas or go to rural areas. There are some providers that do travel to other offices. And then bladder cancer patient volume. So this is the whole spectrum of disease. This is people that are on surveillance, new diagnoses, all that. So you can see there's actually a broad disbursement between how many patients people are seeing per year.
So the working group, they actually had a two-day summit that focused on keys of excellence, and this was actually just held a couple of weeks ago, for bladder cancer care in the community. What they focused on at this summit were, what are some examples of excellence in academic settings that can be translated to the community? This is kind of what I spoke to a lot at our session at BCAN. What are some things that patients really like? We talked about that patients really like often that they can see multiple people at one place. So for Suzanne and Manoj, they are at physically different separate places. A lot of times, at academic settings, people are in the same place, and that's something that patients really like.
Other things that we talked about were kind of the spectrum of things that we can offer as far as intravesical treatments for patients. A lot of times, smaller community practices or private practices have a harder time offering intravesical treatments. I'll talk a little bit more about this, but I think specifically when we start talking about the more pricey things, it can be much harder for community practices to take on that risk. They focused on what strategies they can implement to scale up community centers and what barriers exist. They involved APPs, medical oncologists, nurse navigators, pharmacists, radiation oncologists, social workers, urologists, and importantly, patients.
So some gaps and lessons that we talked about at our session. It was really interesting. We talked a lot about intravesical stewardship. So in community practice, they talked a lot about patients just receiving BCG, BCG, BCG, and they talked about for larger community practices, having a centralized database of where BCG is going and what patients are getting what, and really doing an intravesical stewardship. So kind of trying to shift some of that BCG to maybe other types of treatments. And then management of BCG failures. I think a lot of it has to do with the next bullet, is that a lot of community providers do not offer cystectomy. But management of BCG failures is a huge challenge.
Once BCG is kind of taken its course and if patients don't respond to it, the options start to become cystectomy, gemcitabine-docetaxel with it, which they have a hard time in the community administering because of how it has to be mixed. And then the expense of getting some of the other agents can be quite a lot. When they go out to do this, they take on a lot of risk when they purchase this because they don't get the money back until they administer all of the doses and then bill the insurance companies. So if a patient doesn't show up or a patient disappears, something like that, that's a lot of risk for especially a small practice to take on.
And then cystectomy, this obviously can be quite challenging to manage the patients. It can be challenging to round on patients, have adequate care in the hospital, adequate ICU coverage if necessary. And then I don't know that I can underscore this enough, the nursing support as outpatients for them to provide all the care that they need, ostomy, and just the day-to-day care. And then multidisciplinary care, getting them seen by medical oncologists, radiation oncologists, and a urologist all in a timely coordinated manner can be very difficult. They talked a little bit about site of service billing. Patient navigation, they don't have a lot of financial support for patient navigation. And then the financial risks.
So some lessons that they talked about, kind of moving some of the care to the community and creating an academic environment, but calling it a bladder cancer community excellence is really having a champion, having a physician champion and a nursing champion, and really people that believe strongly in developing this. BCG registry with review was quite important to address that intravesical stewardship gap. And then really developing meaningful relationships with medical oncology and radiation oncology. That's something I think, as an academic provider, I take for granted, the relationships that I have with my medical oncologists. I just walk over to their room that's literally like 10 steps from my room and I ask them a question. I think for urologists in the community, it's much more isolated than that, and the same goes for radiation oncology.
So in summary, I think that there is absolutely tremendous opportunity to create community bladder cancer care excellence. I think that this is something that these working groups have been working on in a very thoughtful manner on how to expand options for patients. Some of the barriers that they talked about are not so different from academic medicine. We have a problem with BCG usage and shortage and stuff the same. We have problems that even cancer centers don't want to front money for some of these more advanced therapies for BCG unresponsive bladder cancers. So I think we also face some of the same struggles, and it's not as different as maybe it once was. And there's still a lot of learning to be done on how to take this into the community and expand this even more beyond community centers in urban areas. There are community centers that are rural too, and having those options for patients can be quite helpful to patients not having to travel far distances.
So take-home messages, community care will really help define this excellence in bladder cancer care and the delivery in the community. And this working group will continue to work on these issues. Patients still struggle to find resources for bladder cancer care, and BCG stewardship has led to a lot of success in community urology.
Ashish Kamat: Thank you so much, Janet. I mean, it's a very important endeavor that the working group has embarked on because we often face this dilemma when patients come to see us, they come to see you, they come to see our colleagues in the referral centers, but then they have to have their family, whether it's their son, grandson, daughter, granddaughter, take time off and they can't come for every visit then. We've seen all the published data where less than 40% of patients in the US who need care for their bladder cancer actually get it in the first place. And then amongst those who get it, not many of them follow up and keep up with the referral. So I think this is a very commendable effort and a laudable goal. Some quick high-level thoughts from you on the role of home intravesical delivery. I don't know if that was discussed at the working group. Any thoughts about that? Because that's been published by a few people as to something that's feasible and doable.
Janet Kukreja: Yeah, we did not talk about that at all during this session, but I agree with you that is something for some of these patients where that could really bridge that gap that you were just talking about. I think we'll see a lot more to come as we continue to investigate even more agents that can do that. But yes, I think that is an excellent point that can bridge the gap of this care.
Ashish Kamat: I think it's something for BCAN, for sure, and also organizations like IBCG to sort of use our network of providers and try to get some regulations passed that would allow people to send nurses to the patient's home without all the red tape that goes with it.
Now, when it comes to radical cystectomy, I mean we're seeing more and more data being submitted to the American board where people are forgetting how to do radical cystectomy because it's just so time-consuming and it doesn't pay right, the hospital or the physician. Any thoughts amongst your working group as to whether the community colleagues should just say, "Well, this isn't worth our time, just honestly, practically speaking," and for that at least, the patient should be referred to the tertiary center? Or is there an effort to try to get more community urologists to want to do these procedures?
Janet Kukreja: Yeah. Yes, absolutely, excellent point. So I think what we discussed, and I think you also have to take a perspective of who was on our panel too. So our panel was made up of all urologists that do cystectomies, and I think at a fairly high volume. So two of them are community practice. I think that while they are not academic, they are still at tertiary centers. So some of this is, how do you function in tandem at a big academic center and a tertiary private practice hospital? So Suzanne and I both practice in the Denver metro area and we do share patients back and forth. So I think a lot of it is a collaboration between those urologists who do want to do cystectomies.
And I agree with you, you really don't want a urologist that does one or two a year. You really want somebody who is well-versed in the operation. And I think there is still going to be centralized care at tertiary centers for cystectomies because of the whole spectrum of issues. One, urologist comfort level; two, all the people around the patient during the hospitalization and then the follow-up care. General urology office that sees every diagnosis of general urology doesn't necessarily pay attention to the patient that had a cystectomy three weeks ago that's calling with a fever and understand the importance of that. So I think the centralized care for that is still critical to the care of a patient with bladder cancer.
Ashish Kamat: Yeah, very well said. Again, very important effort. I'm really looking forward to seeing what develops over the year and what you all talk about at the Think Tank next year in August. So once again, Janet, in the interest of time, we'll need to close this, but I'm sure we'll hear more from you in the next several months. Thank you once again.
Janet Kukreja: Sounds good. Thank you.