The Global Bladder Cancer Survey: A Strategic Analysis of Diagnosis and Care - Stephanie Demkiw & Lydia Makaroff

October 3, 2023

Ashish Kamat discusses the World Bladder Cancer Patient Coalition's Bladder Cancer Patient and Carer Experience Survey with Stephanie Demkiw and Lydia Makaroff. The survey reveals that awareness of bladder cancer symptoms is low, with over half of the respondents unaware of the signs before diagnosis. Dr. Demkiw highlights that women are often diagnosed later than men and discusses the importance of early detection. Dr. Makaroff emphasizes the need for global awareness campaigns and nuanced referral systems. Both guests stress the importance of addressing the psychosocial aspects of a cancer diagnosis, which are often overlooked but crucial for patient well-being. The panelists emphasize the value of nuanced referral guidelines and patient support systems.


Stephanie Demkiw, B.Med, B.Surg, B.Biomed Sci, Bladder Cancer Awareness Australia

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 back to UroToday's Bladder Cancer Center of Excellence. I'm Ashish Kamat, Professor of Urologic Oncology at MD Anderson Cancer Center, and in today's session we're going to be discussing the recently published findings from the Global Bladder Cancer Patient and Carer Experience Survey again. This was run by the World Bladder Cancer Patient Coalition, and for those of you who might not know or might be new, the WBCPC is a international umbrella of bladder cancer organization that connects bladder cancer patients, bladder cancer groups, organizations across the world, and makes sure that they work together to ensure the best possible outcomes and support for bladder cancer patients across the globe. Publishing the support was an excellent milestone for the community because it helped shed light on bladder cancer patient experience, and this multi-year multinational research project was done in collaboration with national bladder cancer patient organizations from across the globe.

I had the distinct pleasure to chair the Expert Advisory Committee overseeing this research project, and I'm joined today with two of my colleagues who had an integral role to play in the success of this research, Dr. Stephanie Demkiw, who's General Practitioner and the Co-Founder of Bladder Cancer Awareness Australia, as well as a member of the Board of the World Bladder Cancer Patient Coalition, and Dr. Lydia Makaroff, who is the President of the World Bladder Cancer Patient Coalition and Chief Executive of Flight Bladder Cancer in the UK.

This session is just one of a series and I want to thank UroToday for giving us the opportunity to do this in collaboration with the World Bladder Cancer Patient Coalition. And today we're going to discuss, specifically, data focusing on that diagnosis experience of our patients and their carers. Lydia, with that, I'll let you kick it off.

Lydia Makaroff: Thank you, Ashish. We were lucky enough to get 1,198 survey responses from many different countries around the world, and these survey respondents were from city and urban, small city and rural areas, and we had around 60% of respondents male and 40% female. We also had a range of ages, however, most responses were over the age of 55 years. We had representatives from many different countries. Most of them, 93%, were from high-income economies, 7% were from middle-income economies. The survey was distributed in 11 different languages and we had the most respondents from the United Kingdom, the United States of America, Australia, France, Italy, Norway, Canada, Argentina, and Poland, but we also had representatives from many different countries. We had a total of 45 countries represented.

When we look at that awareness and diagnosis, we found that prior awareness of peoples' awareness of the signs and symptoms of bladder cancer before their diagnosis was very low. Over half of them did not know the signs and symptoms of bladder cancer before diagnosis. 64% of them did not know that visible blood in the urine was a symptom of bladder cancer. And when we asked respondents, "How well do you understand the signs and symptoms of bladder cancer compared to other common cancers such as breast or colorectal cancer?" Only one-third of them said that they understood the signs and symptoms of bladder cancer as well as the signs and symptoms of more common cancers or other common cancers. 67% of them had visible blood in the urine as a symptom, which is one of the main symptoms, but what we can see here is not all respondents did have blood in the urine as a symptom.

When we look deeper into this, the first step that a lot of people took was to see their family doctor or their GP doctor. However, one-third of them waited for more than a month between seeing their symptoms and speaking to their family doctor or their GP about it. And as I said, most patients want medical attention in the primary care setting. When we asked respondents, "Why did you delay seeing a doctor about the signs and symptoms?" Around a third thought that the signs and symptoms were caused by something else, one-third thought that the signs and symptoms were not serious, and just around one-quarter of them waited to see if the signs and symptoms would go away on their own. I am now passing the floor to Dr. Demkiw, who is a GP in Australia, to speak further about awareness and diagnosis findings. Dr. Demkiw?

Stephanie Demkiw: Thank you, Lydia. In terms of the findings with the awareness and diagnosis, over half were actually diagnosed with another condition before they were diagnosed with their bladder cancer. The most common was a UTI; around 28%. We found that most respondents were diagnosed within 3 months of going to their doctor, but about 1 in 5, it took longer than 3 months, which, for cancer, that is quite a long time to get your diagnosis and can be quite distressing for the patients and families.

We found that 83% of males were diagnosed within the 3 months, but only 70% of females were diagnosed within the 3 months. And that is quite consistent with what we have known to date, which is that females are often diagnosed later than males, and that sort of surrounds a whole lot of other reasons why females might have lower urinary symptoms, why they might have blood. We have known that for a while, but it was interesting to see that reflected in the study as well.

Interestingly, about 1 in 10 visited a doctor five or more times before being referred to a urologist, and this was mainly for those under 55, so the younger patients and the female patients. Again, that sort of relates to a whole lot of reasons why females do present to their doctors with these lower urinary and other signs and symptoms related to bladder cancer. But there is that delay, which we really want to see what we can do to close that gap. Interestingly, 1 in 5 patients found that they were not taken seriously by their doctor when they first presented. I find that quite a worrying statistic from the survey and I think that that's something we really need to look at.

As Lydia mentioned, visible blood in the urine, or hematuria, was the most common symptom experienced by about 67% of respondents. But it is important to note that there are so many other signs and symptoms that patients who have bladder cancer do come with, and I know in my own experience people who have other symptoms, whether it be pelvic pain or back pain or something else, they're quite passionate about the fact that it wasn't hematuria, which I think is something for us to just think about when we're thinking about awareness campaigns and things going forward. And then it was interesting to see, we also looked at splitting up the patients into different age groups. So under 55, between 55 and 74, and over 74, and looked at different initial signs and symptoms of bladder cancer. That was a really interesting way to look at things too.

One of the things that I find, and an ongoing discussion that I'm often having with patients and family members, it all surrounds that initial diagnosis and how things went with the doctor. Around two-thirds were told in a face-to-face meeting that they had bladder cancer. So, a little bit disturbingly, we find that 1 in 3 were told not in that sort of setting. 20% were told during a medical procedure, most often during their cystoscopy where we know the patients are awake and often watching the screen as the surgeon is finding these tumors in the bladder. Over the phone, 9%. Again, a lot of our survey did cover the COVID period, so it's a little bit skewed in that sense. We wouldn't normally tell people that they had a diagnosis of cancer over the phone. It is very much something we would want to do in person, definitely not in a hallway. So just interesting things to reflect on and ways that we can go forward and be better.

Again, two-thirds said that they completely understood the diagnosis when it was communicated to them. That means that 1 in 3, they didn't understand. And that's something we need to take from the survey as well.

Next slide, please. We have a full report, I think it's about 90 pages. It's a really nice read if I say so myself. You can scan the QR code and get a copy of that and it breaks down all the different areas, not just diagnosis, but also treatments and psychosocial areas. Yeah, it's a really interesting read. Thank you.

Ashish Kamat: Thank you so much, Stephanie and Lydia. Of course the full report is available, and, of course, the publication in European Urology for those that want a more concise snippet is available as well. Let me actually ask both of you a few questions to help summarize for our audience. This was a global effort across multiple countries and our viewers are in different parts of the world as well. So keeping that in mind and the different cultures and the different stigma associated with, for example, blood in the urine or seeking out care from a physician, let me ask you first, Stephanie, as a general practitioner that sees patients, what would you advise your fellow general practitioners across the world? Keeping in mind the different geographical locations in which things that they should keep in mind to help patients not be afraid to come to them with some of the symptoms that might be embarrassing that lead to a diagnosis of bladder cancer?

Stephanie Demkiw: I think it really highlights the importance of doing things like a systems review. For non-medical folk, that means, when you're taking a history from a patient, when they come in with their problem, you do something called a systems review. And that is looking at all the different body systems and asking a few screening questions. You ask things about the lungs, you might ask a few things about the heart, about the skin. Because I do find that often patients will come in with one thing, they'll say, "Oh, I've been getting this rash again," And it might be a long-term dermatitis or an eczema or something like that. But, really, what they do want to talk about is a more embarrassing symptom that they've had. And it might be painful intercourse, it might be a little bit of blood in their underwear. It can be anything.

So I do find that using a bit of intuition and also just having a bit of extra time with the patient to ask a few other questions and to put it in a non-threatening way to say, "Look, I'm just going to talk to you about your whole body health. Let's just go through a few things." I find that that's a really good way to normalize these sorts of concerns to patients and the fact that they can talk to you easily about them. So I guess in terms of other general practitioners and primary care physicians, I would encourage taking the time and building that relationship with your patient. Yeah, I've found it a really valuable thing to do as a physician.

Ashish Kamat: Right. Lydia, if I could ask you, there's several campaigns of course, that have been launched in auto tore awareness of the signs and symptoms of bladder cancer and other cancers, but we're focusing on bladder cancer. What do you think has been the penetration of those campaigns? Do you think they've been successful? Is there more that we as a community can do based on what we've learned from this global effort?

Lydia Makaroff: They have been successful in the short term. In the UK the government does awareness campaigns like blood in pee, and they monitor and evaluate them very carefully. So then they look after this to see at the uptake, the number of referrals, at which stage people are diagnosed with cancers related to blood in pee. And we have seen that after these blood in pee campaigns, that you do get a significant increase in people diagnosed with bladder cancer at early stages, which is fantastic.

However, we need to have these campaigns all around the world, not just in high-income countries. And as Dr. Demkiw has mentioned, though around two-thirds of people did have blood in their pee as a symptom of bladder cancer, we see UTIs, for example, in women often or symptoms that appear to be UTIs. So we also need to emphasize the fact that the signs and symptoms of bladder cancer can be diverse, especially emphasizing this to the medical community. And if a young woman presents with something that looks like a UTI that is not clearing up after multiple rounds of antibiotics, then we do need to look at this more closely.

Ashish Kamat: And that's a fine balance, isn't it? Because we obviously don't want to over proceduralize or over-diagnose people as well. At the same time, you don't want to miss the diagnosis. I've had women as young as 17 and 18 with bladder cancer, but clearly you don't think about that when you have those symptoms in a football player that gets injured.

There's been talk about handing over urinary markers to the general practitioners across the world, family doctors, general practitioners to see if that might improve early detection and diagnosis of bladder cancer. What's your perspective on this, Dr. Demkiw? Do you think urinary markers, more than just cytology in the primary care arena, might help, or might they actually hurt in some ways?

Stephanie Demkiw: To be honest, in Australia, we haven't really entered that conversation in an in-depth level to this point in the general practice field. Look, I think if there is the evidence base and there's the research behind these things, they obviously have the potential to be really useful and really powerful. But as you know, Australia's very strict on what does get through from a healthcare point of view.

I know, for example, there were some campaigns about people wanting blanket dipstick testing for patients. All patients over a certain age get a urine dipstick test, see if there's blood in there. But that never got through because the evidence base for that was basically, that has the potential of doing more harm than good when people are otherwise asymptomatic or low risk. So I think if there's a good evidence base for the markers and it is going to potentially help people in terms of earlier diagnosis, better prognosis, that sort of thing, I think it's great. But yeah, I'd love to see a bit more research on it.

Ashish Kamat: The company's obviously targeting general practitioners because it's an easy way to get more tests done, but we don't want to create more harm for our patients. We want early diagnosis of the appropriate cancers, not over-diagnosis and overburdening our patients either.

Stephanie Demkiw: Yes.

Ashish Kamat: We could talk about this forever, but obviously we have to keep to time, so let me have the stage back to each of you and just have you maybe give your high level closing thoughts on this topic of diagnosis. Dr. Makaroff, I'll start with you, and then we'll have our guest, Dr. Demkiw, close it up.

Lydia Makaroff: Thank you. Yes. We know that the signs and symptoms of bladder cancer are diverse and are more than just blood in pee, so we need to empower the general public, general practitioners, and specialists to understand this, and we need to work on healthcare systems as well to make sure that we have quite nuanced referral and diagnosis systems that are able to pick out these signs and symptoms and expedite the people with bladder cancer to specialists while also protecting the sustainability and the workforce and not overloading our workforce as well. So I think that there's some work to be done there in making sure that our referral guidelines are as clear and precise as possible.

Stephanie Demkiw: From my point of view, as a primary care doctor, the diagnosis and the label of cancer and the treatment of the cancer is one battle. But then a lot of what I see and a lot of what I support my patients through is that whole psychosocial side. The survey highlighted things like sleep, sexual function, self-esteem, self-image with a cancer diagnosis, mental health, depression, anxiety, stress, those sorts of things. For some of those things, patients responded saying 60% of them didn't get any information or support surrounding those things, but they felt that they needed it. And that is a lot of people who are going largely unsupported in things that really mean a lot to them in that day-to-day. When you're thinking about your day-to-day life and your quality of life, your sense of self and your mental health, it's so important.

So I think that's a huge thing that I'm taking away as a clinician and as a bladder cancer advocate to really look at and to look at ways that we can close those gaps and help the patients and families. Yeah, hopefully all of these research pursuits, they're really a stepping stone. We never get the ideal population and enough responses as we would like, but I'm thinking it's a really good stepping stone to keep going and always trying to be better. Yeah. I think it's really exciting and I've had a lovely time being part of it, so thank you.

Ashish Kamat: Absolutely. It was a real pleasure for me, of course, to work with both of you, and thank you for UroToday for giving us the opportunity. I want to thank both of you for taking the time, and we are going to address some of these other issues, Dr. Demkiw, in other modules that we're doing at the UroToday. Those are very, very important points that you raised. Once again, thank you for taking the time and hope to see you in person soon.

Stephanie Demkiw: Yep. Thanks, Ashish.

Lydia Makaroff: Thanks.