Enhancing the quality of bladder cancer care in the community setting

In this interview, Suzanne Merrill, MD, FACS, highlights a session that she co-chaired at the Bladder Cancer Advocacy Network (BCAN) Think Tank titled, "Excellence in the community: How to bring specialized care to patients with bladder cancer outside of an academic setting." Merrill is a urologic oncologist specializing in bladder cancer at Colorado Urology.

Could you provide an overview of the BCAN discussion you co-chaired?

Our breakout session focused on how we can enhance quality of care out in the community. It was titled, "Excellence in the community: How to bring specialized care to patients with bladder cancer outside of an academic setting." We had 2 main agenda items, which we felt were much needed to enhance the quality of care out in the community. One was this concept of prehabilitation, which incorporates physical rehab, nutritional enhancement, [and] even mindfulness before surgery for a patient. The second part of the session talked about urinary diversion management, as that is an item that continues in perpetuity for the patient after they have recovered from the major surgery [and] potentially gone through months of chemotherapy. The urinary diversion and how the patient lives with that [and] handles it both mentally and physically is what stays with them throughout their lifetime.

“What a lot of this session talked about outside these specific elements is who we should we target in regard to disseminating the resources that are available, many of which are through BCAN, and who should be the focus of that dissemination? As this meeting is through BCAN, the initial thought was, should the patient be the person who is active in knowing what the resources are? But a lot of us thought that the weight should truly be on the provider,” said Suzanne Merrill, MD.

So, we had a couple of panelists. My session co-chair was Dr. Elizabeth Guancial, and she's a medical oncologist from Florida Cancer Care Specialists. We also had a number of panelists, both from the prehabilitation section and then for the urinary diversion management. From the prehabilitation section we had Dr. Armine K. Smith from Johns Hopkins University and the Sidney Kimmel Cancer Center at the Sibley Memorial Hospital, as well as Suzanne Dutton, a nurse practitioner who had developed a specific prehab program at the Sibley Memorial Hospital and talked about the importance of prehab and what we can bring out into the community that can be more accessible. We were also joined by a bladder cancer survivor. From the urinary diversion management side, we had certified wound ostomy nurse Linda Arundel, RN , CWOCN, from Inova Fair Oaks Hospital, and Heather Chalfin, a urologic oncologist developing a bladder cancer program out in Frederick Health Hospital, who talked about setting up bladder cancer programs in the community.

What are some ongoing challenges for community practitioners who treat patients with bladder cancer?

I think it's both an awareness of the multiple degrees of complexity that are required to get a patient from diagnosis through treatment in a successful manner that is patient-centered, and then knowing the resources that are available to them from an online, national standpoint and from a community standpoint. What a lot of this session talked about outside these specific elements is who we should we target in regard to disseminating the resources that are available, many of which are through BCAN, and who should be the focus of that dissemination? As this meeting is through BCAN, the initial thought was, should the patient be the person who is active in knowing what the resources are? But a lot of us thought that the weight should truly be on the provider.

So, the question is how do we identify the providers who have become specialized out in the community or who want to become specialized out in the community for bladder cancer and provide them with the resources that are currently available and those being developed? Ideas that were tossed around were maybe collaborating with electronic medical records (EMRs) to have it be easy and accessible. [This is a] system that is widely available to almost all urologists, [so the] resource information [could be] easily displayed with either a dot phrase or click box on the EMR and then delivered to the patient. The other thing that came out of this session that is being developed by BCAN is a geographic map of where, by state and region, these important resources are, from wound ostomy nurse clinics to community specialists in bladder cancer, etc. Then, potentially through that map and identification of these key resources out in the community, BCAN can help to tap in to educate those urologists, for example, of the resources that are available, that BCAN has already developed, or are out there by the United Ostomy Association, etc., which their patients can benefit from.

You mentioned earlier this idea of prehab, which is already a resource that practitioners have available. Could you highlight more of the discussions around this topic?

Suzanne Dutton out of Sibley Memorial Hospital has been a key player in developing the Prime program. PRIME stands for Pre-Surgical Rehabilitation and Integrative Medicine for Elders, and it's a program that they developed [in] seeing the need for patients who are elderly [and] frail facing a large surgery, and how to optimize them prior to undergoing surgery so that their post-surgical and even intraoperative outcomes are improved. What they have developed is a very comprehensive program that starts before surgery in identifying that patient, usually by the urologist administering a scale. Then the patient would discuss with one of their specific navigators how to best individualize that prehabilitation state. Sometimes it is physical therapy, other times it is nutritional or working on medications. Then they continue their program through the hospital stay of the patient as well.

Certainly, these are very awesome specialized programs that have developed even in the community setting, but what we realize is that, of course, this is likely not translatable on more of a national scale into the community. What could be more accessible? What came out of our breakout session was could the BCAN website, that being our platform to disseminate information, have a hyperlink for prehab at home. Maybe it has a printable handout or even a video showing specific exercises patients could benefit from leading up to their surgery [so they] know [things like] the core is compromised during surgery. Patients need to figure out how to roll and get out of bed differently. If they choose to have an ileal conduit, then they have a pouch, [so] maybe sleeping is a little bit differently. Knowing that gait stability is important, and how to strengthen the upper body and hips prior to surgery, etc. Then also, nutritional resources out there. What's important to enhance, [such as] protein consumption beforehand. We feel like those elements that the patient can access are more tangible across differences in community settings if a program a community program doesn't have the resources by which to develop a very specific prehab clinic. This prehab clinic that they've developed is funded by grants, and then philanthropy. So, again, it's not something hospitals have the feasibility to fund.

What were some of the discussions surrounding urinary diversion focused on?

I think it goes back to being aware of what is currently available, as well as what do the patients need from a provider standpoint. We sent out a survey to get the pulse of the provider and patient standpoint [on] what the biggest aspects from a urinary diversion management can be of help. What the problems were that they're seeing from a provider standpoint, what the patient is experiencing both acutely and long-term, and then what resources would most benefit them. Interestingly, we found that pouching issues were huge, both sensed by the provider and from the patient perspective. The resource most yearned for appeared to be access to certified wound ostomy nurses who were able to strategize in real time with the patient what the best pouching system would be.

I think a lot of people who do cystectomy work with a patient that chooses ileal conduit know that the companies who supply the pouches do many times have hotlines where you could speak to a nurse, sometimes who is a certified wound ostomy nurse. But having the patient in front of you, as we learned from one of our certified wound ostomy panelists, is invaluable. To be able to see the body formation, how that pouch is sitting, [and] what's going on with a stoma [is important]. So, many times on the phone—even with the day and age of potentially even passing pictures back and forth and even videos—it's just not the same.

Often what is given as a remedy is just adding more and more pouching mechanisms to make it not leak, whereas our certified wound ostomy nurse Linda Rundle said that usually you don't have to do that. [It's] finding what pouch will work best for the patient. Sometimes too, it's going to a different company that might have different resources. [When] calling a company's hotline, they're probably pretty beholden to trying to use their own appliances. We thought of, again, having a hyperlink on the BCAN website as an accessible resource for the provider by which to determine in their area, where may be the closest certified wound ostomy nurse or hospital and outpatient clinic that has such trained people by which they could send their patients to or at least get them in contact with by phone, virtual visit, etc.

Is there anything else that you would like to add?

We picked 2 items that we felt could enhance quality care out in the community, both prehab and urinary diversion management. But what was brought up in the session was that there were a lot of other elements that we could enhance. I think it's about identifying what the resources are out in the community setting, getting that widely disseminated, and then educating the providers who are starting up these community bladder cancer programs or even to just urologists who maybe don't have a focused bladder cancer program but do you see a lot of bladder cancer patients and do cystectomies. Getting them to understand what resources are available, and instilling in their practices these informational [and] educational handouts [or] booklets, making sure that they're aware of BCAN, [in] more of a grassroots effort of spreading the word of what the resources are is also a very necessary element to making sure that we have more health equity for bladder cancer out in these locations where most patients are choosing to live. But hopefully we can figure out how they can get the resources they need rather than having them travel.

This transcript has been edited for clarity.