The World Bladder Cancer Patient Coalition Launches Bladder Cancer Patient Survey

December 1, 2021

Lydia Makaroff, Stephanie Chisolm, and Alex Filicevas join Ashish Kamat on UroToday's Bladder Cancer Center of Excellence for a round table discussion on the importance of bladder cancer from a patient perspective and recent efforts by The World Bladder Cancer Patient Coalition. Their recently launched evidence generation study, or bladder cancer patient survey, aims to capture bladder cancer patient and caregiver experiences around the world.


Lydia Makaroff, Ph.D., CEO of Flight Bladder Cancer and President of the World Bladder Cancer Patient Coalition

Stephanie Chisolm, Ph.D., Director of Education and Advocacy, Bladder Cancer Advocacy Network

Alex Filicevas, Executive Director of the World Bladder Cancer Patient Coalition

Ashish Kamat, MD, MBBS, Professor, Department of Urology, Division of Surgery, University of Texas MD Anderson Cancer Center, President, International Bladder Cancer Group (IBCG), Houston, Texas

Read the Full Video Transcript

Ashish Kamat: Hello everybody, and welcome to UroToday's Bladder Cancer Center of Excellence. I'm Ashish Kamat, Professor of Urologic Oncology and Cancer Research at MD Anderson Cancer Center in Houston, Texas. And it is a great pleasure for me today to host this little mini forum on the importance of bladder cancer from a patient perspective and the World Bladder Cancer Coalition and BCAN, and what we have going on at the moment.

So I'm joined today by Lydia Makaroff, who is the CEO of Fight Bladder Cancer and president of the World Bladder Cancer Patient Coalition. Also, we have with us here today, Stephanie Chisolm, who is the Director of Education and Advocacy. Dr. Chisolm, as we all know, actively supports the BCAN mission. She works to help raise bladder cancer awareness, not just to the general public, but also with [inaudible 00:00:51], local and international and academia, and others.  And last but not least, we have Alex Filicevas, who is the Executive Director of the World Bladder Cancer Patient Coalition, and he has been very instrumental in helping this foster international community of people who are affected by bladder cancer with a common goal to advance cancer information, treatment, and care. We are going to have a few slides today to talk about the recent efforts, and then we will have a quick round table. So with that, Lydia, I think the stage is yours.

Lydia Makaroff: Thank you so much, Dr. Kamat. The World Bladder Cancer Patient Coalition is working to capture the bladder cancer patient experience. The World Bladder Cancer Patient Coalition is currently in eight countries. We have 11 members. We have members in Australia, Canada, the USA, the UK, France, Italy, in Norway, and we have an associate member in South Africa. We are a relatively new coalition. Until 2019, there was not one single organization to speak as the global voice for people living with bladder cancer. But as these various sister organizations started to work together informally, we decided, and we realized that it was time for a formal coalition. So all of the various member organizations worked together to establish formally the World Bladder Cancer Patient Coalition.

We have three missions. Our first mission is to foster an international community of people affected by bladder cancer. As we know bladder cancer doesn't respect borders, and we need to make sure that everyone has access to the best possible treatment and care, which also leads to our second mission, which is to advocate for access to the best possible bladder cancer information, support, and care. And we work to build alliances with health professionals, policymakers, academics, researchers, and industry. So to make sure that there is a global voice of bladder cancer patients.

So what does bladder cancer look like across the globe? So worldwide, bladder cancer is the 10th most common cancer, and it is the 13th leading cancer-related cause of death. Worldwide in 2018, there were over 500,000 incidences and nearly 200,000 deaths. So although it is a neglected cancer, it has a huge impact on people around the world.

Alex Filicevas: Thank you, Lydia. So I'll jump in here to introduce an exciting journey for a step in our journey as an organization and for our bladder cancer patient community which is the recently launched evidence generation study, or bladder cancer patient survey, as we call it, to capture bladder cancer patient and caregiver experiences around the world and to really give them the voice so we can be better advocates for them as a global coalition, but also from national member organizations to drive change locally as well. We aim for this survey to open the door to information, to really deepen and quantify our understanding of bladder cancer patients and caregiver experiences around the world. And we hope to identify some common challenges as a coalition, such as roadblocks to access, but also look at ways to improve patient experiences and bladder cancer patient outcomes around the world.

And we then hope to be able to address these on an international level, as a global coalition together with our member organizations and strategic partners internationally, but also support our member organizations to advance care locally and to be great advocates using that data for bladder cancer patient communities. And of course, we will aim to propose ways to improve bladder cancer patient care, support, raising awareness, and all the services for people affected by bladder cancer and their caregivers as well.

I will now pass it on to Stephanie to talk a little bit about how we got there.

Stephanie Chisolm: Thank you, Alex, and thank you Dr. Kamat for pulling this together because I think it is so important. Obviously, we are really trying to get a global snapshot and any good picture has lots of individual pixels within it. And I think that's really important because we don't know how everybody is comparing around the world. And we convened an expert advisory committee. You can go visit us on our website and see all the different members. And I thank them for their really thoughtful contributions. We really worked very diligently to ensure that the questions that were being asked in this survey, were really going to get at the lived experience of patients because what's really critical, I think is for everybody to understand from researchers all the way through to patients who are reading data, is that behind every end, there are real people and you really need to understand what they are going through in that experience.

And so we really did bring together a very robust group and we really did weigh in and build off of each other's comments as we were going through. So we ooked at the methodology and the actual questions and how we were going to implement the survey. So it was very exciting. So, Alex, I think if you want to go to the next slide, you can certainly do that.

And we really looked at identifying, as a group, what are some of the most significant things we need to understand better and how there are nuances and differences. So right now, I think we've got the survey in English, French, Spanish, and Arabic, and we will be releasing it in some of the other languages that are listed on here, but we are really looking to understand better the awareness about bladder cancer, how people go through that diagnostic process, issues relating to treatment and care and living through that from both the caregiver and patient experience, information, and support that is available within their own individual countries, and then what are some of the quality of life concerns that people have as survivors of bladder cancer? So I think it's going to give us a really good [inaudible 00:07:22] image of what's happening in bladder cancer around the world. Thank you.

Alex Filicevas: Yeah. Thank you, Stephanie. And this is why we are also trying to open this survey to as many people affected by bladder cancer as possible around the world by adding as many languages as we were able to do here. So we are really proud that we will have 11 languages overall for this questionnaire. And the most important part as well, I think is talking about what we want to do, what we will do with these survey results. And as I mentioned earlier, I think each of us had a chance to mention it, is the aim of the survey is really to give the voice to bladder cancer patients, to drive better care and patient outcomes, which was not really given to our community on a global scale before.

And we aim to inform advocacy work which would provide an evidence base for bladder cancer patient communities on the issues that many of our organizations who do provide day to day support are aware of, but this is the database and the data that we can gather and build a strong evidence base to support advocacy internationally. We will publish a report in 2022 aiming to identify strengths and gaps of bladder cancer care pathways from the patient experiences, from their lived experiences, and maximize the potentials from these findings, both on an international scale, but also together with our members in the regional and local setting as well.

So to our readers, to our listeners, and viewers today, I would like to share a little call to action and share with you what can you do to help us reach bladder cancer patients and caregiver communities in your practice, in your countries. And we really invite you to share the survey with your patients and inform your colleagues and your professional bodies of this survey's existence. We want to reach as many patients as possible and we do have a strong patient community around the world, but we are still a growing organization. So we rely on everyone's help and support to make sure that we reach as many people as possible, no matter where they live in the world. And of course, social media is one of the avenues that I think we all know very well, and that can play a big role in helping us spread that word.

And of course, if you have any ideas or suggestions, I would encourage everyone to get in touch with me directly at the email address that you can see on the screen and visit the link as well, to learn a bit more about the survey and about the expert advisory committee that Stephanie has mentioned. So the study is live, our global body cancer patient experience survey, and this is the address at which you can find it. And as we mentioned, it will be available in 11 languages soon, with various videos already available in four of those. So thank you so much. And thank you, Dr. Kamat, for the opportunity to present this work here today. And I'm looking forward to our discussion now.

Ashish Kamat: Great, thank you so much, Alex, Stephanie, and Lydia for that very succinct, but very concise and informative summary of everything that has happened so far. In the spirit of candor, and full disclosure, when you had asked me to serve as the chair of the expert committee, I was obviously overjoyed and happy to do it, but I didn't realize how much detail you would all be going into, which took a lot of time, but it was great because the survey that has come out is truly, I think, going to be one of the first of it's kind to have the voice of patients from the patient's perspective. Not just the questions about quality of life or access to care, but also help us inform and design better clinical trials. What is the endpoint that is actually relevant to the patient? Are we considering failure for a patient to undergo radical cystectomy a good thing or a bad thing, depending on the perspective? And if I might make a plug for the fact that you have an international audience, I think that is very relevant.

I grew up and did most of my studies in India and then came over to North America. And even now when I go back over there and I talk to patients, it's a very different cultural acceptance of certain treatments and radical cystectomy still has a larger stigma in different parts of the world compared to North America where people sometimes have radical cystectomy and in a month, go ahead and golf. Right?

So understanding that global perspective is critical. So I want to thank you for putting this forward. You guys covered pretty much everything that we need to for this topic, but I still want to ask you a few questions that we could emphasize for our audience.

So Lydia, from your perspective, with everything you've done with the various organizations and now Bladder Cancer Coalition, what are some of the challenges that you think our patients face when they try to access these sorts of resources globally? And how can they use the resource that you have provided, or we have provided for them to go about it?

Lydia Makaroff: So when you say resources, you mean.

Ashish Kamat: The resources of the World Bladder Cancer Coalition, the local chapters, things that are available in the public domain in some ways.

Lydia Makaroff: So I think a lot of it is just a lot of patients are not aware of these resources. And I know that many members face the same, the same challenges. So here in the UK, nearly 21,000 people each year are diagnosed with bladder cancer, but we do not support nearly that many. We do not hear from nearly that many. And when we surveyed patients nationally in the UK, we found that around 50% of them are not signposted to support groups as well. And a lot of our work is physically going to different urology units and meeting nurses and telling them that we exist and telling them that we do have these resources to offer.

And this is in a country that does have a patient organization. And I think in other countries, like India that you've mentioned, there is not yet a national bladder cancer patient organization. And there is not yet that national coalition of bladder cancer patients. So I think that there is a lot of work to be done about awareness of bladder cancer and awareness of bladder cancer support groups, and awareness of the World Bladder Cancer Patient Coalition and a startup guide.

Ashish Kamat: Yeah. And like Alex said, social media now does allow us to reach a lot farther even in India where there is a huge social media platform than we could previously. So that is certainly one of the ways in which you could spread the word. Stephanie, you've obviously, you and I have worked on many projects together and you've been very instrumental in all the efforts that we have sort of put forward in North America. From the North American perspective, I guess, what are some of the key points that in your mind differentiate what the World Bladder Cancer Coalition is doing and how could patients that already have access to BCAN in the U.S. also benefit from this global effort?

Stephanie Chisolm: Well, absolutely their voice is just as critical as we do a global scan of what's happening and where there are gaps. We've been very fortunate, BCAN has been around since 2005. So I think we are among, we are the oldest specific organization just focused on bladder cancer, but we're really excited to have been a founding member of the World Bladder Cancer Patient Coalition. I think it was really instrumental to kind of pull this together and develop some resources that will help countries that haven't even got a recent group to be able to begin to grow and develop and build a coalition because what happens very often, and I think this is really a global phenomenon... when you have bladder cancer as a diagnosis, you probably don't know very many people that also have that diagnosis. Nobody talks about it. And I think that's a uniform thing around the world, and just being able to reach and connect that you're not alone, is really critical.

That's always been a big factor for BCAN to make sure that people know that you're not in this by yourself, that there are incredible people that are helping in the way of the clinicians and the researchers. But there are also other patients that are here to provide support and other caregivers that are here to assist. And I think that bringing us all together as a global coalition was really a smart move in that we're here to help other groups that might want to start an organization in their own countries so that we really can begin to form a unified global bladder cancer perspective. That is really, I think the critical piece of it.

Ashish Kamat: Yeah. And, that's great because not only now can people have a global voice, but they can actually have a global resource to where you can reach out to, in some ways regional partners, even if there's a little bit of a sense of intimidation reaching out across the pond entirely from the far reaches of the world all the way to the U.S. or elsewhere.

So this is great, Alex, I didn't mean to keep you for last, but I'm going to give you the last word. What are some snippets you want to share with our listeners and viewers as to how they can, again, leverage the survey for their patients? Obviously, spreading the word and having patients enroll and participate in the survey, but moving forward, what are some of the future directions that you see coming out of this?

Alex Filicevas: Yeah. So I think it's really important to highlight that as you did already with the international scope of the survey and the aim of our work, that what we want to do with the data, which would be available, in a form of a report. So we are looking to really look deeply into the findings and, identify certain areas where care can be improved. In certain countries where we were looking to have a significant amount of responses, we'll be able to have a more in-depth analysis per country as well. So to give a snapshot of the individual country situation there, in addition to the international kind of overall view of bladder cancer experiences there.

I think overall, I would like to highlight that the World Bladder Cancer Patient Coalition is a resource for many countries. We have wonderful organizations that have been there for a long time who are willing to share their learnings and resources for patients around the world.  And the World Bladder Cancer Patient Coalition, we would like to become a hub and resource for patients who are affected by bladder cancer, who are maybe not able to find the information that they need in their countries, to come to us, and then be a resource or a guide to a credible resource about bladder cancer or other bladder cancer patient organizations that might be not necessarily in their countries, but maybe in the region or across the pond, but we can connect them to the right people to find that support.

And one of our biggest mission points is growing the international community of bladder cancer patients. And that comes with supporting the establishment of national and local bladder cancer patient groups, and the startup guide for bladder cancer patient groups that we have launched over the past two years in a number of languages is there to support patient advocates, healthcare professionals, allies, whoever is willing and interested to do a little bit more for people affected by bladder cancer in their countries. We are there to support them and share all that knowledge that we have within the organization. And so that includes as well, the outcomes of the survey that we plan to launch next year.

Ashish Kamat: Great. Thank you. I want to thank each and every one of you for taking the time and sharing your insight on this very important effort that is ongoing right now. And also, I want to take a shout-out and thank UroToday for giving us the opportunity to share this with their audience and viewers, and listeners.  UroToday has always been a big bladder cancer supporter for educational activities and something like this, which is more patient awareness, but also really educational for the community and the patients. Once we get the results of the survey and other data that comes out of it, I think it is going to be a huge resource for everybody that's involved in the field of bladder cancer. From research to education, to implementation. So thank you everyone, and always a pleasure to see you.

Lydia Makaroff: Thank you.

Alex Filicevas: Thank you.

Stephanie Chisolm: Thank you.