Global Insights into Bladder Cancer Care: A Comprehensive Survey by the World Bladder Cancer Patient Coalition - Patrick Hensley & Lydia Makaroff

September 27, 2023

Ashish Kamat is joined by Pat Hensley and Lydia Makaroff, who share insights into patient experiences and treatment access. Drs. Hensley and Makaroff delve into the findings of the Global Bladder Cancer Patient and Care Experience survey, conducted by the World Bladder Cancer Patient Coalition. The survey, which garnered 1,198 respondents from diverse geographies, reveals that while 58% of patients felt adequately involved in treatment decisions, a significant 40% felt otherwise. The discussion also highlights disparities in preoperative counseling, especially concerning sexual side effects post-radical cystectomy. The experts emphasize the need for shared decision-making and better patient education, including discussions about clinical trials. They also touch on the challenges faced by patients in resource-constrained settings, advocating for a more individualized and inclusive approach to care.


Patrick Hensley, MD, the University of Kentucky College of Medicine, Lexington, KY

Lydia Makaroff, PhD, Fight Bladder Cancer, The World Bladder Cancer Patient, Chinnor, UK

Ashish Kamat, MD, MBBS, Professor of Urology and Wayne B. Duddleston Professor of Cancer Research, University of Texas, MD Anderson Cancer Center, Houston, TX

Read the Full Video Transcript

Ashish Kamat: Hello and welcome to UroToday's Bladder Cancer Center of Excellence. I'm Ashish Kamat, professor of Virologic Oncology at MD Anderson Cancer Center. And in today's session in UroToday we're going to discuss the recently published results and findings from the report of the Global Bladder Cancer Patient and Care Experience survey, which was run by the World Bladder Cancer Patient Coalition.

For those of you who might be new to the World Bladder Cancer Patient Coalition, it's an international umbrella bladder cancer patient organization which connects patients, patient groups, organizations globally, and is working to ensure the best possible outcomes and support for bladder cancer patients across the world. Publishing this report was an excellent milestone, an exciting time for the community, as it sheds light on bladder cancer patient and care experiences. This was a multi-year multinational research project that was done in collaboration with national bladder cancer patient organizations across the world.

I had the pleasure of chairing the expert advisory committee overseeing this research project, and today I'm joined by two of my colleagues who had a significant role in the success of this research. Dr. Pat Hensley, who is at the University of Kentucky College of Medicine in the US, was assistant chair of the expert advising committee. And Lydia Makaroff, of course, whom you all know is the president of the World Bladder Cancer Patient Coalition. So this is the first of the series that we're doing in collaboration with UroToday and the World Bladder Cancer Patient Coalition. And here we're going to focus on treatment aspect. So Lydia, please kick it off.

Lydia Makaroff:
Thank you, Dr. Kamat. So these are the findings from the Global Study of the World Bladder Cancer Patient Coalition. We were lucky enough to have 1,198 respondents respond to our survey. 44% of them were from city or urban regions. 33% of them were from small cities and 23% of them were from rural areas. We had 4% of people who were progressing from non-muscle invasive to a muscle invasive. 2% progressed from non-muscle invasive to advanced metastatic disease, and the most common initial diagnosis of 64% had non-muscle invasive bladder cancer. And we saw that 60% of the respondents were male, 40% were female, and most respondents were over the age of 55 years.

We also had a wide range of geographies respond to the surveys. So this survey was available in 11 languages. 93% of the respondents were from high income economies, and 7% were in middle income economies. We had people from all around the world respond to the survey, including the United Kingdom, the United States of America, Australia, France, Italy, Norway, and Canada were the most numerous countries who responded.

So today, as Dr. Kamat has says, we're focusing on our findings in terms of treatment access. So 58% of respondents were involved as much as they wanted to be in making decisions about the care. But this does mean that around 40% of people were not involved as much as they wanted to in making decisions about their care, and felt more as if their decisions were made by their healthcare team rather than shared decision making. In our survey, nearly a third of respondents asked for a second opinion and got one.

However, 51% of people said they did not want or need a second opinion. We've got some quotes here. "I was diagnosed with a low grade non-aggressive bladder cancer. In the appointment with my specialist, I had so many questions I wanted to ask, but I felt hurried like I was at the bottom of a diagnostic pile." And also in North Africa we did see that especially in middle income countries, middle income economies, it was more difficult to access treatment. So what we see here is that while some people do feel as if they were actively involved in their care, that they had good active discussions with their healthcare team and they were able to ask for a second opinion, there was a significant minority of people who really felt as if they were not able to get a second opinion, and then they were not able to be involved in their care.

When we look at metastatic or advanced respondents, these had a much higher rate of satisfaction. This is often because you have a multidisciplinary team involved at this stage, the treatment decisions are more complex, and then often the healthcare team assigns more time to these people and their family. And so this was interesting that in some ways it's the non-muscle invasive bladder cancer patients and the low risk patients and the intermediate risk patients that almost feel as if their cancer was not taken as seriously, and perhaps they were just given standard treatment rather than personalized treatment.

And then we also looked at radical cystectomy, which is one of the most common treatments for muscle invasive bladder cancer. And over a quarter of the total survey respondents had a radical cystectomy. However, something that we did find, that 45% of people were not counselled before radical cystectomy on sexual side effects. And as we know, the operation often involves removal of their sex organs, as well as removal of the bladder. And we did find that this was not properly explained in around 45% of cases of our respondents before surgery.

And so this is a deep dive here into treatment access. So did you ask for a second opinion from another specialist regarding the diagnosis and treatment of your bladder cancer? As I've said earlier, we hid here that we did have that 4% of people said that they did ask for a second opinion but did not get one. While this is a small number, it's still unsatisfactory to see that there are some respondents who asked for a second opinion and were not able to get to. We also had 5% of people who wanted to ask for a second opinion but didn't know how to or were not able to as well, so there's more work to be done there on emphasizing how to ask for a second opinion.

And then there's a huge need in terms of access to clinical trials here. So we saw that 84% of people did not receive any information about clinical trials, and we know that there are many fascinating clinical trials out there that are struggling to recruit, and that are exploring novel and innovative treatments. And we know that clinical trials are not just a last resort, that they really do investigate very important issues and very important treatment combinations as well, and can offer different treatment options to many different patients as well. So there's a lot of work to be done to ensure that more discussions about clinical trials are happening at the point of diagnosis and beyond for bladder cancer patients. So now I pass the chair on to Pat, who will speak about radical cystectomy.

Patrick Hensley:
Thanks so much, Lydia. Pleasure to be here with you today. I'll be sharing some of the results from the respondents who were managed with radical cystectomy as part of their treatment pathway. As we'd expect, most of the radical cystectomy is performed, in the respondents was performed for muscle invasive disease, 70%. But there was a fair number, upwards of a quarter of the patients underwent radical cystectomy for non-muscle invasive disease as well, which is a very informative patient group.

I think there's two major takeaways from the results from the patient survey, and they both have to do with preoperative patient counseling, shared decision-making. And as Lydia kind of mentioned before, one of the big deficits in this preoperative patient counseling is the lack of discussion on very predictable sexual side effects after radical cystectomy. And you could see only about half of patients were counseled on sexual side effects after radical cystectomy, and there was a big disparate difference between females and males, with only 11% of females feeling like they were adequately counseled on sexual side effects preoperatively.

An additional important takeaway is that only about a quarter of patients discuss with their multidisciplinary treatment team approaches to spare their bladder. And the next slide will kind of inform these various bladder preservation treatment options. So among the nearly quarter of patients who were counseled ultimately on bladder preservation options as an alternative to radical cystectomy, the most common bladder preservation treatment strategy was continued intravesical chemotherapy. And that was likely from the roughly quarter of patients who had a radical cystectomy for high risk non-muscle invasive bladder cancer. You can see a very small fraction of patients were offered chemotherapy and radiation therapy, so-called trimodal therapy, which we know is a guideline supported treatment alternative to radical cystectomy, and even fewer patients were offered partial cystectomy or other treatment options.

Ashish Kamat: So thank you for that, Lydia and Pat, and of course we will have the QR code for the full report, and of course this is published. I want to ask you a couple of questions, and let me start off with you, Pat, since you just finished up.

When you show the data about the radical cystectomy and then that the patients were not given access or offered the other treatment options, in some ways it mistakenly implies that this is an error, right? But it might just be a reflection of the fact that those treatments are not applicable to that particular patient. Any comments on that distribution that we found from patient reports?

Patrick Hensley:
Yeah, it's hard to take a deep dive into individual patient variables that led to the ultimate decision to proceed with radical cystectomy. We do know that neoadjuvant chemotherapy followed by cystectomy is kind of a reference standard for muscle invasive bladder cancer. Typically, if you're selecting patients for trimodal therapy with chemotherapy and radiation therapy or even partial cystectomy, there are some patient and tumor characteristics that highly inform the treatment success for these radical cystectomy alternatives. So in a large global database like this, it's hard to kind of parse out those individual patient characteristics and tumor characteristics. But I do think that the onus is on the multidisciplinary treatment team to at least discuss these options for patients even if they're not candidates for those various cystectomy alternatives.

Ashish Kamat:
And I think that's one of the key messages, right? I mean this was a survey of patients and their carers, and for patients to feel like they were not offered a discussion is the important part. If it was discussed and not recommended, that's a different discussion. And then that brings me Lydia to something that was very, very disappointing to see. I mean, it was an eyeopener, we all knew this, but about the counseling when it comes to sexual function and access for female patients to actually understand what this means. As someone who's obviously led this group, what is your message to people listening as to what can the community do better when it comes to counseling our patients?

Lydia Makaroff:
I think some of the messages are, we saw that a lot of the respondents were over 55, and there might also be an assumption that these people are not sexually active, or that these discussions only need to happen with people who are sexually active. And I think that there is also still a taboo, for example, speaking about vaginal shortening, speaking about clinical de-nervation as well, that if the clinicians do not lead the discussion and speak about these sexual side effects that might happen or perhaps discuss surgical alternatives and surgical techniques to avoid these side effects, we need to have a discussion because the patients and their families might not feel as if they're able to talk about sex, to talk about the sexual side effects if the clinician is not leading this. And I would also encourage the nurses as well and the healthcare teams, if the clinician themselves don't feel as if they have the time or the expertise to speak about this and some of the ways that we can mitigate these side effects, then perhaps there's another member of the healthcare team that can lead these discussions.

Ashish Kamat:
In our short time that we have in discussion, we focused on the key areas. But one thing I want you to share your thoughts with us, Lydia and Pat, of course, we are fortunate to be living in the countries that we live in. But many of the patients who responded, and of course patients who have bladder cancer, live in less fortunate parts of the world where treatment access is a huge problem. And we saw that in some of the responses. What would be your closing message? I'll give each of you a minute or two to the audiences that are listening here that take care of patients in these areas in somewhat remote parts of the world. Lydia, you first?

Lydia Makaroff:
Yes. So it's important to still discuss treatment options even if you do have limited options. There's also a lot of work to do working with the World Health Organization, looking at what is the list of essential medicines, and do we have the bladder cancer treatment medicines that we need on the list of essential medicines as well? And what are the cost-effective solutions? How can we work together to make sure that no matter where you live in the world, if you're affected by bladder cancer, there are appropriate cost-effective solutions for you? Because we also know that even in resource-constrained settings, if we treat early, if we diagnose early, then there's actually less strain on the healthcare system than if we have late treatment and late diagnosis.

Ashish Kamat:
Pat, your thoughts.

Patrick Hensley:
Yeah, I think we all strive to practice contemporary guideline concordant care. There's certainly either, whether it be patient factors, or healthcare related factors, or access to care factors that may limit our ability to give a patient textbooks standardized care. I think appropriate risk stratification for various treatment modalities and individualizing care to patients rather than kind of doing a one-size fits all approach to high risk, non-muscle invasive disease or de-novo kind of muscle invasive non-metastatic disease, you have to individualize the care for the patients. And I think centralization of care when at all possible, has proven benefits from an oncologic care outcome.

But we know it's not possible for every patient. So I think working with the community urologists, the community providers, and really kind of incorporating them into the multidisciplinary treatment team is very, very, very important, especially for perioperative outcomes for procedures like radical cystectomy. There needs to be a home base for that patient locally. And I just think that wrapping those primary providers and other community urologists into that multidisciplinary team is very important.

Ashish Kamat:
Great points both of you, and I want to thank you for taking the time and spending it with us today here. I know both of you feel about this just as passionately as I do. And I also want to thank UroToday for allowing us to feature this as part of a series on the World Bladder Cancer Patient Coalition's global survey. So thank you once again.

Patrick Hensley:
Thank you very much. Pleasure.

Lydia Makaroff:
Thank you.