What are some of the obstacles that bladder cancer patients experience?
Makaroff: There are obstacles across the entire patient pathway. When it comes to awareness, there are obstacles; when it comes to diagnosis—obstacles; when it comes to treatment—obstacles; and there are also obstacles when it comes to survivorship.
Each stage of the patient journey has its unique challenges, and we're working with healthcare professionals, patient organisations, and other stakeholders to see if we can overcome those obstacles and make a bladder cancer diagnosis as easy as possible for the patient and their family.
Filicevas: We've just recently carried out our first global data cancer patient survey. This is the first for our community, and we've just presented the poster at the European Association of Urology 2023 Congress.
The reason for this survey was that we wanted to quantify some of these experiences that Lydia has mentioned that exist throughout the entire care pathway. To look at some of the common threads that exist across the world, and how we can identify and work on those collectively with our patient advocacy groups around the world to drive that change. As a global coalition, we are very much focused on generating data that can be applied globally.
Medicom: Is this a good time to ask about the topline results or is it too early?
Filicevas: The results are not public yet, so we are very excited to be publishing them later this year. I invite everyone listening to keep an eye out for the results.
Filicevas: Perhaps I can share some of the teaser data today? In our survey, awareness was one of the areas that we looked into. Respondents were primarily patients or caregivers responding on behalf of a patient; we were surprised that about two-thirds of them were not aware of bladder cancer prior to their diagnosis. In addition, a similar number of responders said that they were not aware of blood in urine as the most common symptom of bladder cancer. We could conclude that this survey identifies a great need to continue working on raising awareness about bladder cancer in itself and its symptoms. And as Lydia mentioned, Bladder Cancer Awareness Month is such a great opportunity: an entire month to really focus and bring attention to bladder cancer around the world.
This year, we are very excited to launch a new campaign that focuses on this common symptom, blood in urine, and the fact that awareness and misdiagnosis are still very common challenges. Our survey also asked patients why they may have delayed seeing a doctor, and some of the reasons were that they were hoping that any blood in urine or other symptoms that they were experiencing would turn out to be nothing serious or would go away.
There are 2 elements to awareness and action: firstly, calling on patients to seek medical care when they are experiencing a concerning symptom, and, secondly, physician awareness. We need to make sure that physicians do consider, especially in the primary care setting, that blood in urine might be a case to investigate for bladder cancer. And so, this year's campaign is focused on an Unsure Icon (see Figure).
It's an icon that can be interpreted in different ways; everyone might see something different in it, but that's the whole point. We felt that this Unsure Icon captured this uncertainty and misinterpretation, which we can weave into a much broader conversation around the globe so that we can engage people who may not necessarily be exposed to healthcare, cancer, and bladder cancer. We hope to spark many conversations all around the world.
Makaroff: If you are looking at this Unsure Icon, do you see a bladder? Do you see a stopwatch? Do you see a drop of blood? It’s a beautiful visual designed to symbolise many of the different factors that are important to patients during Bladder Cancer Awareness Month, symbolising the importance of looking out for signs and symptoms and of getting a timely diagnosis and treatment.
Medicom: It's super important to get that message across. Perhaps this is a good time to mention the website people should visit?
Filicevas: On worldbladdercancer.org we have prepared a range of resources. For example, we have fantastic eye-catching posters focused around this icon that Lydia so beautifully described just now, which you can print and put up in your practice. Whether you work with bladder cancer patients or not, I think raising awareness is a fantastic opportunity to do so within your practice and across social media. I would very much encourage you to explore the tools we have created!
Makaroff: One of the survey results is that many people who hear the words "you have bladder cancer" for the first time have never heard of bladder cancer and don't know anyone else with the disease. So, one of the missions of the World Bladder Cancer Patient Coalition is to remind everyone around the world that they're not alone and that we have member organisations and support groups around the world.
We ask all healthcare professionals who give diagnoses of bladder cancer or suspected bladder cancer to please signpost to patient organisations. It really helps patients and their caregivers to know that they're not alone and that there is a community of people out there who want to support them through this very, very difficult time during their lives.
Medicom: How can patient organisations such as yours influence access to care and quality care?
Makaroff: First of all, we can't change what we don't measure. So, patient organisations are very good at doing surveys and asking the right questions, as well as looking holistically at unmet needs and gaps in treatment. We can say: this treatment needs to be reimbursed, or there needs to be more nurses in this area, or there needs to be faster diagnosis, or this pathway needs to change.
Evidence-based advocacy can also help. We can share information about best practices and practice pathways as well. We can explain national and international guidelines in simple terms, and we can say to patients: ‘This is the type of care that your country or your region says that you should be receiving. If you're not receiving this, then something has gone wrong and these are the people that you need to work on.’ So we can work at both the micro level in terms of working with individual patients and work at the national and international level to build better pathways and build better access to treatments.
Medicom: Could you talk to us about policy and how patient coalitions can work to influence policy?
Filicevas: I think patient organisations, in general, have such a crucial role as partners in anything concerning patient care, including policy. Bladder cancer is indeed the 10th most commonly diagnosed cancer around the world. Yet, the lack of patient organisations around the world is something that drives our work every day. We are very focused on supporting patient advocates, patients, family members, caregivers, and healthcare professionals within their communities to connect and start bladder cancer patient support groups in whatever format applies to the local setting and the needs of patients within their community. This is a critical element that I'd like to link to policy because a strong bladder cancer patient advocacy group within the country is what can enact and drive change with policymakers.
Medicom: What are you both doing to celebrate World Bladder Cancer Awareness Month?
Makaroff: My other job is as chief executive of Fight Bladder Cancer in the UK. In the UK, we have what we call ‘Wee Walks,’ which are small community walks to raise awareness of bladder cancer in our local community. We'll be taking a ‘Wee Walk’ around the neighbourhood wearing lots of orange, holding signs, and bringing together the local bladder cancer community to raise awareness, remind each other that we're not alone, and celebrate the lives of people affected by bladder cancer.
On 31 May, we'll be blowing bubbles for bladder cancer, which is a lovely symbol as well that we can share on social media to help raise awareness.
Filicevas: There are so many beautiful initiatives all around the world in different countries. I wish I could attend them all, but I'll be trying to at least support all of them in spirit. We have these beautiful pin badges that I'll be giving out to as many people as I can with the intent to spark conversations. And if any readers would like to contribute to this, do reach out to us. You can find all the information on our website worldbladdercancer.org.
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