This transcript has been edited for clarity.
Cheryl Lee, MD: Welcome to Medscape InDiscussion. I'm Dr Cheryl Lee, and today we'll be talking about health equity and its flip side — disparities — for individuals, particularly those with bladder cancer. Health equity is the state at which everyone has the opportunity to attain full health potential. As we think about bladder cancer, we know that many people have life-threatening cancers, and they're untreated or undertreated, many times because of lack of access to high-quality care. Of course, as clinicians, how can we manage our bladder cancer patients more equitably? For expert guidance on these questions, we've invited Dr Angela Smith to give us some of her insights. She is a professor of urology and director of urologic oncology at the University of North Carolina (UNC) at Chapel Hill. She's also the director of the Urologic Oncology Service Line at UNC. And as we all know her in the field, her research focus has been highly patient centered. She has had a research focus on patient-centered outcomes, risk stratification, and quality of care for patients with invasive and high-risk bladder cancer. Welcome, Angie.
Angela B. Smith, MD: Thank you, Dr Lee. It's great to be here, and I'm excited to be able to talk about this important topic today.
Lee: Fantastic. Before we get into the main discussion, I'm sure our audience would be interested to learn more about you. You've had a fantastic career. Maybe you could talk a bit about your background and what shaped your professional path from biostatistics to the management of complex bladder cancer.
Smith: It's been a long journey, and I was even a musician along the way, so I was fortunate to have a lot of variety in my life. I will say that urology was a fortuitous experience in medical school. I was particularly drawn to urologic cancers at that time for a couple of reasons. The first is that I feel that many of the urologic cancers we treat are curative with surgery. So I think urologists can play an important role in treatment. A lot of the treatments that involve urologic malignancies also significantly impact quality of life, and that drew me in. On a personal note, my grandfather had been diagnosed with metastatic bladder cancer and unfortunately passed away from it when I was young, and my own father was diagnosed with bladder cancer — so it's personal as well as professional reasons. I have found a lot of joy in treating patients with bladder cancer and being able to pursue research advancing the way in which we treat it.
Lee: It's easy now to see how and why you're so dedicated to taking care of patients with this disease, and we're all lucky to have you in the field. We know that the gender and race of bladder cancer patients have important implications in bladder cancer, and this really extends from disease incidence, diagnosis, treatment, and outcomes. Could you first summarize some of the important disparities in bladder cancer and what measures you believe have helped improve these disparities?
Smith: I think the first thing to consider is what the demographics of bladder cancer look like. While bladder cancer is more common among older White men, bladder cancer also impacts women. It impacts Black patients. And the important piece of this is that there are disparities with regard to both survival and in the way in which patients are treated. These disparities vary in in a number of different ways. Dr Lee, you've done your own research from years ago that we continue to iterate, but the concern is that survival differences over time have really not budged. You can see that Black patients, for example, are diagnosed with higher-grade, higher-stage tumors compared with White patients, even when you control for variables like age and region of the country and treatment received. So we know that there's something there that continues to exist to create disparities in the way White and Black patients are treated and in how they move through their disease process.
Now, when you look at male and female patients, there are also disparities. We know that female patients tend to have worse survival than male patients, and there are a variety of different hypotheses as to why this might be true. One of the leading hypotheses is that women present with disease at a later stage. They perhaps seek care but are misdiagnosed with, for example, a urinary tract infection. And then this leads to a delay in diagnosis of what ends up being bladder cancer.
There are likely a lot of disparities that exist because of our biases as providers. It's important to highlight this because even though bladder cancer is less likely to impact women and Black patients, when it does, these patients have worse survival and worse outcomes. We need to figure out why, and we need to figure out how to change this.
Lee: It's been striking how eerily similar some of the data are from now compared to a decade or 20 years ago. I keep thinking about what we as providers have opportunities to do. I'm glad you bring up the issue of bias. There are implicit biases. You mentioned an obvious one with women and hematuria. There's the sense of treatment bias even if patients have similar presenting symptoms and signs. There are times when they get prescribed different therapies. There's so much great data in the world of cardiology and patients presenting to the emergency room with heart attacks, but do we have that same issue in the treatment of bladder cancer? I don't know if we know all of the answers there. Do you have any thoughts on that?
Smith: I think you hit the nail on the head. And I do think we have issues here. We know that cystectomies performed by providers who have higher [patient] volume typically have better outcomes. But there was a study that looked at Black and White patients and how they were treated with regard to cystectomy, and there was a significant difference based upon who performed the cystectomy or if it was performed. We have seen that disease stage presentation — for example, localized and regional disease — has stayed the same, but what has not stayed the same and what has not been improved is advanced disease. I can say, even from a personal standpoint in North Carolina, that I have a large patient population from the Black community. We see a lot of rural patients. I can see first and foremost the way in which they present with disease. Many come from a delayed diagnosis. I know this is anecdotal, but I can see this in my own clinic — I have a lot of referred women in my clinic, but in particular, Black women. They come to me with a very similar story. They've had bladder pain, they've had hematuria, and they were not worked up. I do believe there was bias with regard to how they were treated before they even showed up at my doorstep. And when they come with pain, there's already a lack of trust in the system. I think this is such a complex interplay between the right type of treatment, the right type of diagnosis, and then having a provider who believes the patient and symptoms they're experiencing and who doesn't have preconceived notions about what treatment they might want. And so, as you are well aware, it's very complex. As providers, we have to be very self-reflective on how we're treating our patients and making sure we aren't making assumptions steeped in bias.
Lee: I couldn't agree with you more. We see the same phenomenon in other areas like racial differences in managing pain. We're not always carrying the same impression of a patient who presents with the same signs and symptoms. In bladder cancer, another issue we face is that patients often have many comorbidities, and there are opportunities to deny very aggressive therapies. Often, we have to counsel patients strongly to seek the treatments that will offer the highest survival rates. It's a very active process as a provider in bladder cancer; you're often educating patients and convincing them that there are curative options for treatment.
Smith: And Cheryl, I'll add to that because part of the reason I love urology circles back to the fact that you really have to understand not only what patients' goals of care are but also their fear and mistrust in the system. It's one thing to educate a patient about the disease presentation and what their disease treatment options are. But it's another to better understand where they're coming from and being able to align these two things so you can address their fears and give them the courage to know they can undergo these treatments as long as they have a provider who cares about them. My goal is to make sure they feel this way when I'm treating them. I think this plays a big role because if they don't have trust in the system, they may not feel comfortable moving through more aggressive treatments like cystectomy. I can understand why that might be the case.
Lee: That brings to mind some of the work you have done with the Bladder Cancer Advocacy Network, an organization we both have spent a lot of time with and are deeply committed to. Some of your work with this organization has involved patient preferences, and I know that's led to the CISTO trial you've led with Dr John Gore. I am wondering if you could share with our audience some information about the CISTO trial and whether it will yield data that might help us better understand needs that women and minoritized patients may have.
Smith: Absolutely. The CISTO trial, in a one sentence summary, is basically a prospective cohort study that is evaluating patients with bacillus Calmette-Guérin–unresponsive disease. As we know, this is a very patient preference–heavy type of disease because patients are essentially choosing between bladder conservation and the potential for progression, or bladder removal with cystectomy. With this study, we are trying to look at a couple of things we know are missing in our armamentarium as urologists and for patients who are trying to make this important decision. That is, we don't have a good sense of what is happening after the patient makes their decision. We also don't have a good sense of what preferences drive these decisions, and so we designed this trial with 32 sites across the country — Ohio State being one of them, with your leadership. And in this trial design, we specifically recruited sites such that we could overrepresent women and minoritized patients to better understand the reasons they decide to choose one treatment over another. It's not just understanding what the outcomes are; it's also understanding what's driving the decision-making. The study is looking at quality of life and many different patient-specific outcomes that lead to decision-making — not just survival, not just recurrence, but also the patients' urinary symptoms, sexual function, and many other important outcomes. We're also interviewing these patients to get a deeper understanding of what they're going through when they're trying to make the decision.
Lee: I think that's where we are going to see some of the social determinants of health really come out on seeking or agreeing to have treatment. Many people are struggling with home issues, social issues, and community issues and don't feel they can step out of whatever environment they're in to undergo major surgery. I think we'll all be waiting for the results of that study.
Smith: Thank you. One of the outcomes to speak to that is financial toxicity. The outcome was selected based on patient advocate input saying that this is a very costly cancer that requires a lot of transportation, so it feeds right into social determinants of health. We're excited to have patient advocates who are part of the study who can help drive in that direction, so we are asking the right questions.
Lee: Another thing I have always admired about you is your commitment to training the future generation and how you've mentored so many students and trainees in the field. I know you have some emerging work, so I was wondering if you could share some of that.
Smith: Absolutely. First, I have to say that I learn from the best. I'm just trying to pay that forward. So, thank you. I have a wonderful medical student who is interested in pursuing urology who will be on the interview trail coming up — Gabrielle Nortey. She came to me with this question in clinic. She noticed that these disparities exist and that we don't have a good sense of what the experience looks like as a Black patient diagnosed with bladder cancer. At UNC, we have a very diverse patient population, and I have developed relationships, which are trusting relationships, with many Black patients who have had bladder cancer. But we really don't have a sense of everything they might go through — not just social determinants of health, but their experience overall.
Gabby's project is a two-pronged project. The first is to understand patient experiences by interviewing both men and women affected by bladder cancer, Black men and women. The second prong involves interviewing individuals across the country who treat bladder cancer and understanding their experience with patients affected by bladder cancer. Then, trying to understand what that experience looks like and what we could do to improve some of the disparities we see — not just from the perspective of urologists but also social workers, psychologists, and anybody who touches the patient — to see where there are opportunities for providers to improve care. Because as you nicely said in an article you wrote years ago: If we're going to plan to move this needle in any direction, we really do have to delve deeper into what disparities exist and then what we can do — what is within our control to change. The only way we can do this is to do qualitative research projects and start hypothesizing about what is there and what we can start to tackle to move that needle.
Lee: That's exciting work, and I'm so happy to hear it's coming from a medical student because they are the future of our field. We're almost out of time, but before we wrap up, is there anything you want to pass along to the listeners?
Smith: Yes. I want our listeners to be aware that we have had many medical advances that have improved the diagnosis and treatment of bladder cancer. I want to recognize this because even since my grandfather had bladder cancer — the reason I came into bladder cancer — I've felt like not a lot of advances had been made, but now we have seen them. The problem that still exists that is important as we see these advances occur, is that there are significant and well-documented disparities in the receipt of these advances, particularly among racial and ethnic minoritized patients and women. As providers, we are the first line of defense. We have to consider our own biases. I reflect on this every day — on the care I deliver — and I check my assumptions, so I'm providing equitable care. We also need to tailor how we contribute to bladder cancer awareness and education to hopefully eliminate the disparities that persist. And then finally, on a more systemic level, we need to support legislation in health policy to improve healthcare equity. It really starts there on the larger level. There are certain things we can do to support this and expand healthcare access for all.
Lee: So well said. As usual, you've summarized it beautifully. For any listener, the next time someone comes into your office who is underrepresented in the disease of bladder cancer, really consider how you're interacting with that patient, what their needs are, and what you can do to ensure they get the best care and the best survival from their disease. I want to wrap up and thank Dr Smith for joining us today. It really has been insightful. I'm Cheryl Lee for Medscape InDiscussion.
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Cite this: Bladder Cancer Advances Abound, but for Which Patients? - Medscape - Oct 06, 2022.