Discussing tools and resources to support the bladder cancer patient community

insights from industryDr. Ignacio Duran & Alex FilicevasMedical Oncologist & Executive DirectorMarques de Valdecilla University Hospital & World Bladder Cancer Patient Coalition

In this interview, Dr. Ignacio Duran & Alex Filicevas discuss the bladder cancer patient support landscape, including a review of the tools and resources available to the community, as well as key unmet needs to address.

Video credit: Janssen Pharmaceuticals

Watch the full discussion here

Can you explain what the current patient support landscape looks like in bladder cancer?

Alex Filicevas: The current patient support landscape in bladder cancer is quite varied both around the world and in Europe. In many cases, we would have patient-led organizations providing much-needed information for people affected by bladder cancer at different stages of their disease: from diagnosis; to treatment and survivorship; providing guidance and, of course, supportive information to help them in their decision-making, and working with their healthcare professional.^1,2

The essential aspect that many patients raise as the most valuable to them is the peer support that is available within these groups in different formats: being able to talk to someone who has been through the same journey as you.³

It depends on where patients live.⁴ If patients are based in the United Kingdom, there are excellent organizations there leading the way in providing support and even engaging in research.⁵

If based in another country – for instance, in Romania or Greece, which has the highest incidence of bladder cancer in Europe – there is simply less available dedicated bladder cancer patient support.^4,6,7

The World Bladder Cancer Patient Coalition’s mission is to support the establishment of bladder cancer patient groups because we believe that grassroots support that can be on the ground there from the local experience and local guidance in the local healthcare setting is much more valuable for patients; we can thus do more from a global point of view.^4,8

How important is the presence of patient support for you as a healthcare professional?

Ignacio Durán: The key point here is that patient support changes across the spectrum of different countries. This is not fair; there is no equity, and it is very variable, so depending on where you are diagnosed, your support is going to change in a big magnitude.⁴  I believe that we have a lot of work to do in that concern because until now, we have mostly understood patient support in terms of medical or nursing techniques.⁹

There is much more to be understood regarding patient support, and we cannot leave that aside.⁹

What type of support is available now on a day-to-day basis?

Alex Filicevas: On a day-to-day basis, the immediate support of family and friends is really important for patients where possible. When it comes to more organizational support, there is a varying degree of direct support and phone support, for example.^10,11 United Kingdom Fight Bladder Cancer has a support net helpline where patients can call at any point to share and have someone listen to their concerns, and I will advise them and help them on their journey.¹²

There are online support networks as well. This has become increasingly valuable since the start of the pandemic because patients have lost that sort of direct interaction that, in many instances, we had in support groups.¹³

Are there resources where people can find information on the disease on the treatment?

Alex Filicevas: A lot of information has been developed across the world to high standards, in collaboration with healthcare professionals, including the dispensing of more recent information (including patient information booklets).¹⁴

I would like to highlight something that our member organization in the UK, Fight Bladder Cancer, has developed: a fantastic suite of 10 booklets, each tackling different aspects of facing bladder cancer, from treatments to side effects and sort of a whole range of different aspects that you should think about.¹⁵ These suites are shared with healthcare professionals; urology clinics, who then can share these with patients directly - specific to the information that they need at the time.¹⁵

If someone has been diagnosed, we have to think about what they might need. It is important that patients are not overloaded with information but are only given what is specifically necessary for them at the time. Of course, they should have a point of contact if they need and require additional information.

Is being able to send patients for more information to reliable resources key?

Ignacio Durán: At the micro-level, help is very variable and can even depend on which region you are in and at which hospital you are being treated.^4,16 As a community in Spain - and as a urological or uro-oncological community-  we have a great deal of work to do to get our patients better educated.¹⁶

I think an educated patient is a happier patient: they can make decisions more appropriately; can have information to be analyzed, and can have a better idea of what their diagnosis is as well as their treatment options, and their prognosis. I think all of that really helps.¹⁷

What are the key gaps in patient support at the moment?

Ignacio Durán: Access to information is probably one of the biggest gaps. Not everyone has access to a network of patients like they do in the UK, a forum for discussion, or a phone number where you can call and share your anxieties, fears or questions.^5,18 Obviously, there is a lot of work to do to homogenize patient information and patient support groups. In the meantime, what we have to do as healthcare providers is to better inform and educate our patients from the medical and nursing perspective.¹⁹

What is your view on these gaps? And what’s the Coalition doing to try to overcome them?

Alex Filicevas: I think the biggest challenge that we currently have is access to information, and where that information exists, making sure that it is accessible to everybody or as big a population as possible.⁸

One of the areas where patients feel as though they have not received enough support or information to help them cope, for instance, is sexual health and intimacy. That ranges from before to after treatment.

We believe that we really need to help patients better understand the impacts of treatment choice on their sexual health and performance after the treatment and also help them cope with the after-effects of the treatment and in new ways of intimacy.²⁰

Emotional and psychological support is another area that is greatly highlighted by patient communities as an area where there is a lack of existing support: and also more holistic, more personalized support information as well.^17,21 Women are a smaller population of people affected by bladder cancer but still make up a quarter of the patients affected, and a lot of information is very male-focused, and this is something that, as a community, we strive to change.^22,23

How important is the emotional aspect of this issue?  

Ignacio Durán: For many decades, those tackling the issue have concentrated more on the medical side of things: considering the success rate of treating my patient with this particular systemic treatment.⁹

Doctors may be content if the patient responds to treatment or is free of disease, but many people may not think about the psychological impact. This is another point that needs to be addressed.

We work alongside our psychological support groups and we have psych oncologists in the unit, but probably underutilize them for two reasons: first, because of a lack of resources and we need more people working around this,²⁴ and secondly because patients are still quite reluctant to admit that they need that support. There is still some stigma around psychological support.²⁵

Alex Filicevas: Not everyone recognizes that they need psychological support.²⁶ So, making sure that we are aware of it in the healthcare setting - so the healthcare professionals can guide patients towards it  - is essential.²¹

Can you give a few examples of existing support models for psychological support?

Alex Filicevas: Patient support really varies from country to country. Even within countries, there is a very limited amount of support.⁴ Where it is available, it will most likely be in a healthcare setting, as Dr. Durán has mentioned: having psycho-oncologists on hand and learning from our patient communities. I think this is where collaboration can be of great value to healthcare professionals.

There are changing needs at different stages of the disease as well. There are many different aspects of patient needs, and when they need that mental health and emotional support, it is important to know what kind of support is needed.^9,17

How important are family members and carers, and what support exists for them?

Ignacio Durán: We might term family members and carers ‘the big forgotten.’ Being a family member of a cancer patient can sometimes be very difficult. This is more obvious when we are dealing with advanced diseases.²⁷

When dealing with situations where the patient is confronting a diagnosis with a dismal prognosis; and where patients really have a very complicated relationship with their family members, these may be very complex cases. These scenarios are difficult, as patients may completely change the way they connect with their loved ones.^27,28

In our clinic, we always leave the door open for support for family members. However, I think they are the last on the list of people who may receive extra help, which is probably something we should also consider changing.

Alex Filicevas: We often refer to the caregivers as the unsung heroes who, quietly in the background, provide much-needed support to patients.

There are the emotional needs of a patient, and there are the emotional needs of a caregiver. This makes it a very complex relationship, which requires much attention.^27,28

Is there information globally available on all the patient groups and support groups that there are for patients around the world?

Alex Filicevas: Broadly, for bladder cancer patient information, I would guide individuals to the world Bladder Cancer Patient Coalition website.

We have all our member organizations in different countries listed there, and they have more targeted resources directly relevant to patients within those countries. We are also currently building a suite of resources that are much broader and are applicable to patient communities, as well as caregivers.¹⁴ Though we do not have caregiver information just yet, this is becoming an area of great focus for us.

About Dr. Duran:

As a Medical Oncologist with interests in clinical and translational research and teaching, Dr Ignacio Durán is currently working at the Medical Oncology Department of Hospital Universitario Marques de Valdecilla in Santander, Spain where he leads the GU oncology section.

Dr. Durán is a member of the American Society of Clinical Oncology (ASCO), the European Society for Medical Oncology (ESMO) and the Spanish Society of Medical Oncology (SEOM). His major interests are genitourinary tumors, neuroendocrine tumors, and anticancer clinical drug development.

About Alex Filicevas:

As Executive Director at World Bladder Cancer Patient Coalition, Alex Filicevas is a passionate cancer patient advocate focused on driving meaningful change in cancer research, policy, and care. Alex is also President of All.Can International and a EUPATI fellow.

Filicevas leads the efforts to foster an international community of strong bladder cancer patient advocates and organizations around the world, empowering patient voices across the research and care continuum.

References

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19. Quale. DZ, et al. (2015) Bladder Cancer Patient Advocacy: A Global Perspective, Bladder Cancer, 1(3), pp.117-122
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22. Vo, A. X. et al. Evaluating Patient-Defined Priorities for Female Patients with Bladder Cancer, 2021, 7(1), pp.53-60
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