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Ashish Kamat: Hello and welcome to UroToday's Bladder Cancer Center of Excellence. I'm Ashish Kamat, Professor of Urologic Oncology at MD Anderson Cancer Center, and I'm joined today by Lori Cirefice from France, who's president of the French Bladder Cancer Patient Coalition, and also Vice President of the World Bladder Cancer Patient Coalition. And also by Dr. Lydia Makaroff, who's the President of the World Bladder Cancer Patient Coalition and the Chief Executive Officer of Fight Bladder Cancer in the UK.

Today's session is one of a series, and in today's session we're going to again discuss the recently published findings from the Global World Bladder Cancer Patient Coalition Survey that was run and organized by the WBCPC, as we now call it. For those that might be new to the organization, it's an international umbrella organization that connects bladder cancer patients, groups, carers, organizations around the world to ensure the best possible outcomes for both bladder cancer patients, their carers, and of course the community at large. This report was an excellent and exciting milestone for the community because it helped shed light on bladder cancer patient experiences. It was a multi-year, multinational research project and I had the distinct pleasure of being chair of the Expert Advisory Committee. But of course, I was joined by folks such as Lori and Lydia in leading this effort globally.

So again, this is one of a four part series, and thank you again to UroToday for allowing us to do this. Today we're going to focus specifically on the impact on daily life and the impact on carers from the diagnosis of bladder cancer. So Lydia, again, I'll kick it off to you.

Lydia Makaroff: Thank you very much, Ashish. Yes, today we are doing a dive into the daily life and the impact on carers. So let's look at the respondent's characteristics of this survey. So we had nearly 1,200 survey responses. We had 45 different countries represented, and we had a variety of geographies represented, city and urban, small city and rural areas. Looking at the respondent's characteristics in terms of geography, we had 93% of them were from high-income countries and 7% were from middle-income economies. We had a variety of languages represented. The survey was translated into 11 languages, and we have respondents from, as I said, 45 different countries, especially the United Kingdom, USA, Australia, France, Italy, Norway, and Canada. And today we are looking at the impact on daily life.

So we found that having bladder cancer impacted people financially to a varying degree. One third of them said that they had no change in their employment status, just under one third were already retired or unemployed, one in 10 took early retirement and one in 10 were temporarily off work. When we asked patients if they were impacted financially, 50% of them said that, yes, they were impacted financially. 57% of people with advanced or metastatic cancer said that they were impacted financially, and 68% of younger respondents aged under 55 said that they were impacted financially. This makes sense because those under the age of 55 are more likely to have been in employment before they were diagnosed with bladder cancer.

When we look further at the impact on daily life, we also asked respondents about the emotional impact of bladder cancer, and respondents said that the main areas that they felt an impact was sexual performance, hopes for the future and stress and anxiety. So one third of respondents said that diagnosis of bladder cancer affected their sexual performance, around one quarter said that this affected their hopes for the future, and around one quarter said that it increased their stress and anxiety levels. We also looked at caregivers to find out what the impact would be on them. And Lori, would you like to speak about the impact on carers?

Lori Funk-Cirefice: Thank you very much, Lydia, yes. The survey findings about the impact on carers of bladder cancer patients, now you recall that we had 67 respondents from carers. It turns out that the vast majority of them are providing support to either their spouse, partner, or a parent. And most of them have been doing so for over a year, up to 71% of them have been providing caring support over a year. Carers often lacked information about how to care for a person with bladder cancer. Only a fifth of carers found all the information that they needed about how to care for somebody affected by bladder cancer. So you will see that 64% of carers were supporting their spouse or partner, and 24% were supporting a parent.

So the survey findings about carers, as I said, almost 91% of caregivers said they were impacted emotionally by caring for or supporting someone with bladder cancer. Emotional support to the patient was the most challenging aspect of that. You'll see that the duration of care is quite striking. The majority of carers had been providing support for over a year, which puts a lot of strain and pressure on relationships when one person is really ill. 40% of carers felt upset that their life would not be as planned, 34% experienced feelings of guilt, 60% experienced emotional distress and 54% experience an impact on their own wellbeing.
So if you would like to read the full report, you can scan the QR code to download the full survey report.

Ashish Kamat: Thank you so much, Lori and Lydia for shedding light and sharing the slides on this very important topic. When we look at patients that are obviously diagnosed with bladder cancer and then have to go through the whole journey along with their loved ones and their carers, we sometimes lose sight of some of these important points, right? So a lot of what we gleaned from the survey was not surprising to me per se, but was almost like an eye opener that even today in this current modern era, we are facing these challenges and our patients are facing these challenges. What was your thought, Lori, when you saw these results, just having been with family members involved and yourself being a carer? What about that?

Lori Funk-Cirefice: I'm a bladder cancer patient carer myself, and I've experienced over a period of 10 years now the personal impact that bladder cancer has on the patient and the whole family, particularly on the spouse. The findings that I saw really resonated with me because it reflected my own experience and the experiences that I read about among our French bladder cancer patients and their spouses and children who are members of our French organization. These are really common themes that we see all the time, and it's great to have data that shows what we already know, this is what's really exciting about the survey report is we can put quantifiable data on everybody's experience.

Ashish Kamat: Yeah, absolutely. And being able to quantify it and actually seeing the numbers is sobering in some ways, right? And Lydia, we've talked with the organization on this is sobering information, now we need a call to action. Of course, we have action items listed on the website, we're hoping to reach collaborations with different groups. Some thoughts from your perspective on what the community can do today, even before we kind of launch those initiatives, to help address some of the issues that we found?

Lydia Makaroff: Yes, so two of the main issues that we found were, one, around financial toxicity and, two, around the impact on carers and caregivers and what can we do to help with that? When we look at carers and caregivers, one of the first things that we can do is actually encourage family members to identify as a carer, as a caregiver, because in many countries there are resources available to carers, but people might just say, "Oh, I'm just a family member. That's just what you do. That's just what family does." And if they self-identify as a carer or a caregiver, then that might help them access financial and emotional resources that might help them with this. So we do encourage people to recognize the work that they're doing as unpaid carers.

And then in terms of financial toxicity, that is a huge impact that we need to look at. Many people affected by cancer, if it's affecting their employment status, for example, we need to have conversations about that. And once again, as bladder cancer community members, we need to make sure that we are sign-posting people appropriately, that hopefully in many countries there is some sort of financial assistance or benefits to people who have been financially affected. And once again, we need to make sure that we are providing information and support not only about the cancer diagnosis, but also about any financial support that might be available.

Ashish Kamat: And we've known for many years that bladder cancer is the most expensive cancer in humans to treat, per se, but we often mistake that for actual healthcare dollar costs only. But the financial toxicity to the patient, their family, and the emotional toxicity, I mean, we can't really put a price on that, right? And what was sobering, of course, to see is that yes, if you actually look at the numbers, it looks like, okay, only one third of the patients actually had to be affected when it came to their work, but that's not accounting for the fact that one third of patients are already retired, right? So it's one third of the remaining 60%, so that's half the patients, like you said, that are significantly impacted.

One thing that I did want to ask both of you, since you're both part of the international community, is that we are all fortunate to be living in the developed world, so to speak, but there's a lot of patients and especially represented in the survey that came from countries where they don't have access to resources, where the daily earning is minimal compared to if you look at dollars or euros. How would we, as a community, be able to help patients in those parts of the world?

Lori Funk-Cirefice: Well, obviously one of the missions of the World Bladder Cancer Patient Coalition is to foster the development of patient groups in countries where there are none today. In our French bladder cancer patient group, we see quite often patients from Tunisia, Morocco, Algeria, where their financial situation is quite different than from the financial situation of patients in France. We encourage them to seek support in their country, to find out from local organizations because there are no bladder cancer patient organizations, but we encourage them to seek out umbrella organizations and national support organizations to find out what's available already to them in their country. It's also about helping them to educate themselves about the disease and to figure out what questions they should ask their doctor at the next appointment because they don't have resources, there's no printouts, things that they can bring to the next appointment to have a meaningful discussion about their treatment options with their doctor.

Ashish Kamat: Lydia, anything from your perspective?

Lydia Makaroff: Yes, I would add that the more conversations that we have about bladder cancer, the more we can decrease stigma as well. And hopefully we should understand that a cancer diagnosis means different things to different people, but it doesn't always mean that you have to stop working, or perhaps with a little bit of accommodation or a little bit more time off, you might be able to work in a different way as well. So whether you're in a high resource or a resource constrained environment, if we can understand cancer more and speak about it more openly than if people are willing and able to return to work, then we should be able to do what we can to make sure that people who have cancer who would like to return to work and who can are given the opportunity to do so. And then if the people with cancer are not able to return to work, then hopefully as a community we can come together and find ways to support those people and make sure that the impact of cancer is minimized as much as possible.

Ashish Kamat: Yeah, no, and again, I thank you both for your comments and of course we have the full link at the QR code. In closing, maybe if you could share your high level thoughts with us once again, and I'll start off with you, Lydia, and then Lori, you, and then we'll wrap it up.

Lydia Makaroff: Thank you, Ashish. We see in the survey that the role of the unpaid carer, the family members, the spouses, the children of people affected by bladder cancer is invaluable. And it can be an extremely tough role, and it's often a role that people didn't sign up for. And so just a huge thank you from me to all of the unpaid caregivers out there who are helping someone affected by bladder cancer. I know it can be a lonely and a frustrating role sometimes, but please remember that there's an entire community out there who would like to help you.

Ashish Kamat: And Lori?

Lori Funk-Cirefice: I'd just like to reflect on the fact that some of the data the survey highlighted really shows the chronic nature of a bladder cancer diagnosis. It's a disease where you're going to have follow-ups for 5, 10, 15 years, and the impact of that on the long-term for patients and families needs to be recognized more, and there needs to be long-term support. Really what can we do to help bladder cancer patients and their families to encourage them to seek out support, peer support, psychological support, support from their medical team and community resources, no matter what country they're in, to recognize that the stress and anxiety of having to go through multiple exams and often, unfortunately, recurrences of disease, it really takes a toll over time on patients and their loved ones.

Ashish Kamat: Yeah, great points both of you, and I want to thank you once again for taking the time and spending it with us today. And once again, thank you to UroToday for allowing us to highlight this very important message, thanks.

Lydia Makaroff: Thank you.

Lori Funk-Cirefice: Thank you.