In this interview, Dr. Ignacio Duran and Alex Filicevas discuss the picture of support for patients with bladder cancer, including a review of the tools and resources available to the community, as well as the key unmet needs that need to be addressed.
Video credit: Janssen Pharmaceuticals
Watch the full discussion here
Can you explain what the current landscape of patient support in bladder cancer is like?
Alex Filicevas: The current landscape of patient support for bladder cancer is quite varied both around the world and in Europe. In many cases, we would have patient-led organizations that provide much-needed information for people affected by bladder cancer at different stages of their disease: from diagnosis; to treatment and survival; provide guidance and, of course, supportive information to assist them in 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 gone the same way as you.3
It depends on where the patients live.4 If patients are based in the UK, there are excellent organizations that lead the way in providing support and even participating in research.5
If you are in another country, for example, Romania or Greece, which have the highest incidence of bladder cancer in Europe, there is simply less dedicated support for the patient with bladder cancer available.4,6,7.
The mission of the World Bladder Cancer Patient Coalition is to support the establishment of groups of patients with bladder cancer because we believe that the basic support that can be there on the ground based on local experience and local guidance in the local healthcare setting it is much more valuable to patients; so we can 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. It is not fair; there is no equity, and it is very variable, so depending on where you are diagnosed, your support will change greatly.4 I think we have a lot of work to do in this concern because so far, they have mostly understood patient support in terms of medical or nursing techniques.9
There is much more to understand when it comes to patient support, and we cannot ignore that.9
What kind of support is available now in the day to day?
Alex Filicevas: On a day-to-day basis, immediate support from family and friends is very important to patients whenever possible. When it comes to more organizational support, there is a varying degree of direct support and telephone support, for example.10,11 The UK Fight Bladder Cancer has a network helpline where patients can call at any time to share and make someone listen to their concerns, and I will advise and assist them in their journey.12
There are also online support networks. This has become increasingly valuable since the beginning of the pandemic because patients have lost this type of direct interaction that in many cases we had in support groups.13
Are there resources where people can find information about the disease about treatment?
Alex Filicevas: A lot of information has been developed around the world with high standards, in collaboration with health professionals, including the provision of the latest information (including patient information leaflets) .14
I would like to highlight something that our member organization in the UK, Fight Bladder Cancer, has developed: a fantastic suite of 10 brochures, each addressing different aspects of dealing with bladder cancer, from treatments to effects secondary and a number of different aspects you should think about.15 These suites are shared with healthcare professionals; urology clinics, which can then share them directly with patients, specifically to the information they need at the time.15
If someone has been diagnosed, we need to think about what they may need. It is important that patients are not overloaded with information but only provided with what is specifically needed for them at the time. Of course, they should have a point of contact if they need and require additional information.
Is it key to be able to send patients for more information to reliable resources?
Ignacio Durán: At the micro level, help is very variable and may even depend on the region where you are and the hospital they treat you.4,16 As a community in Spain – and as a community uro -oncological or uro-oncological. – We have a lot of work to do to better educate our patients.16
I think an educated patient is a happier patient: they can make decisions more appropriately; they may have information to analyze, and they may have a better idea of what their diagnosis is as well as their treatment options and prognosis. I think all of this really helps.17
What are the key gaps in patient care at this time?
Ignacio Durán: Access to information is probably one of the biggest gaps. Not everyone has access to a network of patients as they do in the UK, a discussion forum or a phone number where you can call and share your concerns, fears or questions.5,18 Obviously, there is a lot of work to be done to homogenize patient information and patient support groups. In the meantime, what we need to do as health care providers is better inform and educate our patients from a medical and nursing perspective.19
What is your opinion on these gaps? And what is the Coalition doing to try to overcome them?
Alex Filicevas: I think the biggest challenge we currently have is access to information, and where that information exists, make sure it is accessible to everyone or to as large a population as possible.8
One of the areas where patients feel they have not received enough support or information to help them cope, for example, is sexual health and intimacy. This goes 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 treatment and also help them cope with the after effects of treatment and new ways of intimacy. .20
Emotional and psychological support is another area highlighted by patient communities as an area where existing support is lacking: and also more holistic and personalized support information.17,21 Women are a smaller population of people affected by cancer of bladder but still make up a quarter of the affected patients, and a lot of information is very focused on men, and this is something that, as a community, we strive to change.22,23.
How important is the emotional aspect of this topic?
Ignacio Durán: For many decades, those who address the issue have focused more on the medical side of things: given the success rate of treating my patient with this particular systemic treatment.9
Doctors may be happy 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 have oncology psychologists in the unit, but we probably underuse them for two reasons: first, due to lack of resources and we need more people to work with, 24 and second because patients are still quite reluctant. admit they need that support. There is still some stigma surrounding psychological support.25
Alex Filicevas: Not everyone recognizes that they need psychological support.26 Therefore, it is essential to make sure that we are aware of this in the healthcare field, so that healthcare professionals can guide patients.21
Can you give some examples of existing support models for psychological support?
Alex Filicevas: Patient support varies greatly from country to country. Even within countries, there is a very limited amount of support.4 When it is available, it will most likely be in a healthcare setting, as Drs. Durán: having psychooncologists on hand and learning from our patient communities. I think this is where collaboration can be of great value to health professionals.
There are also changing needs in the different stages of the disease. There are many different aspects of patients ’needs, and when they need this mental health and emotional support, it is important to know what kind of support is needed9,17.
How important are family members and caregivers, and what support is there for them?
Ignacio Durán: We could say that relatives and caregivers are “the great forgotten”. Being a relative of a cancer patient can sometimes be very difficult. This is most evident when it comes to advanced diseases.27
When it comes to situations where the patient is faced with a diagnosis with an unfortunate prognosis; and where patients actually have a very complicated relationship with their relatives, these can be very complex cases. These scenarios are difficult, as patients can completely change the way they connect with their loved ones.27,28
At our clinic, we always leave the door open to support relatives. However, I think they are the last on the list of people who can get extra help, which we should probably consider changing as well.
Alex Filicevas: We often refer to caregivers as unrecognized heroes who, silently, in the background, give 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 a lot of attention.27,28
Is there globally available information on all patient groups and patient support groups around the world?
Alex …