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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 thank you again for joining us today for this session, which is one of a four-part series that we are doing in conjunction with UroToday and the World Bladder Cancer Patient Coalition to discuss some of the key data coming out from a global survey that was recently completed and published. Today we are going to focus on a specific subtopic, which is the supportive and complementary care needs. Now most of you, of course, are well aware of the World Bladder Cancer Patient Coalition, but for those of you that might need an introduction, this is an international umbrella of bladder cancer organizations that connects bladder cancer patients, bladder cancer groups, and organizations, as well as carers that are working globally to ensure the best possible outcomes for bladder cancer patients across the world.

This particular publication of the global survey was an exciting milestone for the entire community because it helped shed light on bladder cancer patient experience, not provider experience, but patient experience. And this was a multi-year, multinational research project done in collaboration and conjunction with national bladder cancer patient organizations from across the globe. I have the pleasure to chair the expert advisory committee overseeing this research project, but clearly it could not have been done without the help of many people, and I'm pleased to have today two of them, colleagues of mine that had a very significant role in the success of this research. Dr. Bente Jensen, who's an associate professor at the Department of Urology at Aarhus University Hospital in Denmark and chair of the European Association of Urology and Nurses Bladder Cancer Group, and Alex Filicevas, who is the executive director of the World Bladder Cancer Patient Coalition. So, thank you for joining us and Alex, let me have you kick it off.

Alex Filicevas: Thank you so much, Dr. Kamat. It's wonderful to be here and have this opportunity to discuss the findings from our global survey. And as you mentioned today, we'll dive deeper into the findings on supportive and complementary care needs from the patient survey results. So firstly, our respondent characteristics, so we had a fantastic 1,200 respondents who responded to the survey and our questionnaire uniquely also involved a specific questionnaire for bladder cancer carers, and we had 67 responses to that survey as well. 64% of respondents had an initial diagnosis of non-muscle invasive bladder cancer. In terms of sex distribution, 60% of respondents were male and 40% of respondents were female. And most of the respondents of the survey were over the age of 55 years, with the largest group being between 55 to 74, that represented 66% of respondents. The percentage of respondents by geographic area was 44% for city and urban areas, 33% were based in a small city or medium to large towns, and the remainder in the rural areas.


Almost all respondents who completed the survey lived in high-income economies, so that was 93% of total survey respondents, but the survey was global in its scope, so it was open to respondents from any country for both patients and carers. And the survey was available in 11 languages, and we can see in the table below the respondent distribution per language. And as I've mentioned before, it was open globally to respondents from any country and we were lucky to get insights from patients and carers from 45 countries, with the largest proportion of these coming from the United Kingdom, United States of America, Australia, France, Italy, and Norway. And you see the percentage distribution for other countries in the table below. Patients often lacked health and support in many areas even though it was needed.


And you can see in the table here that some of the highest challenges that patients face in terms of finding support for them was in regards to financial and employment questions and challenges, questions about alternative and complementary therapies, and questions around self-image as well. Some of the patient stories or quotes that they have shared in their responses as well pointed out that there was a lack of these support resources available within the hospital or where it was available, oftentimes they had to pay out of pocket and pay for the services themselves. Interestingly, in the table on the right, you will see that where we asked patients, "Have you been able to get help and support for the following areas?" Smoking cessation and stoma care support were the ones that featured highest when it comes to definitely patients being able to receive the support.


There were also areas around exercise and activity, as well as stress and bowel function where patients were able to get some support to an extent, but the highest areas to the ones that I've mentioned additionally where patients were not able to receive support but definitely needed it were in the areas of sexual function and relationships, depression and anxiety, and stress. Emotional and psychological support was also difficult to access for patients. 58% of patients were not offered emotional support, although 91% of patients said that they needed more support and 55% were unable to get support for depression and anxiety in their care as well. We asked patients as well about the follow-up and patients describe the lack of follow-up and support after treatment has concluded, describing the feelings of being alone without the appropriate tools to manage their condition after the active treatment phase was over.

And you can see in some of the comments from the patient as well that they had challenges of finding the support, but some who were, felt very fortunate to have had access to these valuable resources such as helping patients processing their feelings of dealing with the diagnosis. The data also shows that patients really wanted... Most patients wanted support from all their healthcare professionals, doctors, and also family and friends and a large number, a majority of them were able to receive the support, which is pointing to quite a wonderful data to hear.

Patients also needed more information throughout their diagnosis, treatment, and care, especially information on treatment options and duration. 39% wanted more information on diagnosis and what it means, as well as side effects of treatment as well. You will see that on the table on the right in figure 23, which asks, "which of the following, if any, have you needed more information about?" We'll see that there were some differences between male and female respondents and, in general, females had a greater need for more information compared to males. The only exception was for information on sexual function and fertility, where men expressed a greater need for this type of information. The role of peer support groups, patient organizations, and charities in providing supportive and complementary care is well documented. And in our questionnaire, in our survey, nearly three quarters of people said... So, that was 73% said that they did not receive information about peer supportive groups and charities.

Often, people found this information through their own research and half of the respondents, 50% to be exact, contacted a patient organization or charity for support and females were more likely to contact a patient organization, so that was 55% compared to 47% of male respondents. And it was also more common for people with non-muscle invasive cancer at 52% compared to 49% for muscle invasive bladder cancer to contact a patient organization or charity. And this was even lower for patients with advanced metastatic cancer at 36%. Many respondents also commented on the fact that there was a struggle to access patient support groups during the time where the survey ran or closely before that due to COVID because this was also close to the time of the height of the pandemic. When we asked patients about the type of information and the way they prefer to find information about bladder cancer, the highest preference was 66% receiving this information from websites, 47% from their general practitioner or other healthcare professional nurses, 36% from different online support groups, and 35% from brochures, patient information booklets on treatment.

And this varies, of course, from patient to patient and the differences in gender and health literacy of course impact this too. We've also asked patients about the importance of patient groups and did they get all the information and support that they needed from the patient group or charity, and 58% of respondents said that they definitely received all the information that they needed and another 43% said that yes, they received enough information to some extent at least. So, this is just a snippet of a lot of information that we have from the Global Bladder Cancer Patient and Carer Survey. This is the last of the four-episode series, also specifically looking at supportive care and complicated care needs. We invite you to scan the QR code or visit our website at worldbladdercancer.org where you will find the full report. It's about 80 pages worth of unique insights, which can help us drive meaningful change and working together with different stakeholders to address the high unmet needs that patients have expressed in this survey. So, thank you so much and over to you, Dr. Kamat.

Ashish Kamat: Thank you, Alex, for summarizing all of that in a very succinct manner. There's so many questions that come to mind when we got the results of the survey and we had to distill it down into easily publishable snippets and snippets that are understandable by the broader audience. But with that specific issue in mind, Bente, if I could ask you, what are some of the things about the results that we got that surprised you and what were some of the things that you expected and were not quite as surprising? What were you expecting and what was surprising to you?

Bente Jensen: Thank you. What I wonder, and when I read the report for the first time, I was really surprised that the gender disparities actually came through because I think that's one of the unspoken issues that we treat all patients equally, but I don't think we pay enough attention to the gender aspect. And this is also part of what Alex just talked about when he talked about supportive care. We see that women actually have some different needs compared to men, and I think we should take this message and put it forward to our colleagues and they should pay attention to the fact that there is actually a gender difference which we have to acknowledge and also implement in our care on a daily basis. And I think that should be pretty easy because now we have actually seen it here in this report. So, I think we should definitely pay attention to it in the clinic in the future.

I also actually noted that many of the supportive care needs they spoke or they marked in this report is that I think there is a high need for more pre-habilitation where you can talk and teach the patient about the need of exercising, also the stoma problems, which not seems to be so heavy in this report, but also about sexual issues and nutritional issues. There's a lot of things we can prepare the patient better and make them empowered to go through this, if not surgery, then the non-muscle invasive treatment. So, I think there's a lot of things we can take to the clinic from this report. There is an extended need of pre-habilitation but also follow-up care and rehabilitation. So, this is what I really found interesting. I didn't think they were so significant, the numbers, but now we have it and it's important results and it's an important message to us as healthcare professionals.

Ashish Kamat: It was great to see it quantified because we all sort of knew that this was happening, but to see it quantified in numbers actually drives it home. One thing that wasn't surprising, but was still disappointing to see was the lack of awareness or lack of availability of patients with access to support groups, right?

Bente Jensen: Exactly.

Ashish Kamat: And Alex, you have obviously been involved with the World Bladder Cancer Coalition since its outset. Could you share with our audience some of the things that, from your perspective, they can do locally in their region? Because our audience is global, it's not just North America. There are people listening in right now from all over the world. What practical tips can you give to folks that may not have access to patient advocacy groups in their local region?

Bente Jensen: That's a $1,000 question, actually, but I think as a... Do you mean as a patient or you mean as a professional?

Ashish Kamat: I guess if you could speak from the patient perspective and then Alex could speak from the professional perspective, I guess we could split it that way.


Bente Jensen: From a patient perspective, I think it's very important that they sort of ask all the good questions before they undergo any kind of treatment because if they don't know themselves where to go to or where to seek support, we definitely, as healthcare professionals in an advanced cancer field, can provide the right information on where to go to if they can't find it themselves. In Denmark, we have a very, what you say, strong bladder cancer patient advocacy, but we don't have charities like you have in the US or perhaps in the UK as well. So, we have another kind of tradition to inform the patient, but there's always a professional network behind any, what you say, cancer pathway.

So, we have the information, but maybe we are not that good at informing the patient if they don't ask themselves. So for us, I think it's very important that we ask the patient, "Is there any support you need or information you need right now?" Because then we can direct you to the right person or to the right office. I think we should be better and sort of use our voice and inform the patient in time, so they can perhaps reduce some of their anxiety or perhaps some of their curiosity, so we can address it in the right way in time. And I think also the results here bear witness that we should, in the future, make a special effort to make sure that they feel informed.


Ashish Kamat: And Alex, from your perspective?

Alex Filicevas: I think one of the starkest findings from this survey was indeed the fact that we had 73% of patients not guided towards a patient group, considering that also a large number of respondents come from countries where we do have existing bladder cancer patient support organizations who have been there also for a number of years. So, I think connecting healthcare professionals with these resources that these organizations provide is so, so important. I would ask also for healthcare professionals in the countries perhaps where they do not have a patient organization, first of all, to listen to the patient, to really listen and better understand them as a person and understand their lifestyle, perhaps, and their needs to be able to better understand what the supportive care needs might be.


And also creating an environment where patients would feel comfortable to ask a question or seek a specific need that they might have, whether it be nutritional health or it could be sexual health, where patients can sometimes be intimidated to ask those questions. So, I think it's important from the healthcare professionals' side to also create this environment or maybe prompt some of these questions directly to the patient. And lastly, on the same point, the World Bladder Cancer Patient Coalition's mission is to help connect patient advocates and healthcare professionals and help them start support networks within their own country. So, for those who are seeing the need within their own setting, within their own community, I would highly encourage reaching out to the World Bladder Cancer Patient Coalition because this is what we are here to help you with.


Ashish Kamat: And on that point, I think it's a great point to end on. You are here and we are all here to help people that are seeking advice and guidance along these lines. I want to thank you both for taking the time, Bente and Alex, and spending it with me on this important topic. And I also want to thank UroToday for allowing us to do this. So, thank you everybody, and stay safe.

Bente Jensen: Bye.

Alex Filicevas: Thank you. It's a pleasure.