In this interview with Dr. Ignacio Durán, who is a medical oncologist at Hospital Universitario Marqués de Valdecilla, and Alex Filicevas, who is the Executive Director of the World Bladder Cancer Patient Coalition, the gap between healthcare professionals and patients is discussed, as well as measures on how to close the gap.
Video credit: Janssen Pharmaceuticals
Can you tell us about the key challenges that HCPs face during consultations?
Dr. Ignacio Durán: The key challenges that HCPs face during consultations include a number of things, but I would say one of them is probably the level of information that the patient has when it comes to a first visit.1 This is probably a team effort, where we will have to work with other specialists because it would be helpful if the patient has received some degree of information by the surgeon or other specialists before they are seen in the clinic by an oncologist.2
Are there any aspects of the disease which people with bladder cancer find more difficult to discuss with their doctor?
Alex Filicevas: There are many aspects of the disease that people faced with bladder cancer find difficult to discuss with a healthcare professional.3 However, the disease and the impact of cancer overall affects different patients very differently. So, it is a rather individual experience.4 But if I had to choose one area that patients often find difficult to freely and comfortably talk about, it’s the impact on sexual health,5 and this is an area where perhaps it remains unaddressed in the healthcare setting.6 Both men and women have different needs when it comes to talking and communicating about this disease.
The impact on sexual health is not always discussed with the patient, especially in advance of more radical treatment, and they may find it more difficult to address it on their own initiative with the healthcare professional.5 Another area that is also not often discussed is emotional and mental well-being. This has an impact on patients at the time of diagnosis, but also throughout treatment and after the treatments.7,8 Mental health is an area that requires more of a focus;7 it is a challenging conversation to have for both a patient and the healthcare professional.9
All these different support needs require attention. I think we, as a patient advocacy community and as healthcare professionals, need to make sure that patients do not feel alone.
Dr. Ignacio Durán: I think expected outcomes are also a difficult topic to discuss.10 This is one of the topics that, sometimes, is a little bit more difficult when it comes to discussing response rates and expected survival. Those are things that still, in my clinic, generate a little bit of discomfort. We may find family members that want to know a lot about expected outcomes, and the patient does not want to receive all that information or vice versa.11 That is a challenging conversation when it comes to expected outcomes.
How can we try to bridge the gap between patients and their doctors?
Alex Filicevas: To bridge the gap between patients and HCPs, I think it is important to also, from a patient advocacy standpoint, for patient groups to work with healthcare professionals, but at the same time, for healthcare professionals to be encouraged to work with the patient groups themselves. This builds a mutually-beneficial relationship, bringing greater awareness to shared decision-making processes and the importance of empowering patients to participate in the care and more actively understand the different treatment choices available and the impact of treatment on the patient.12,13
Alex Filicevas: Like Dr.Duran said, having that conversation about expected outcomes is also difficult.10 The role of patient support services that are available, whether in the healthcare setting, healthcare services setting, or from patient organizations themselves, is really important where patients can go and speak to other patients who have gone through the same journey and have a broader network of support that goes beyond their immediate healthcare team and their immediate family or friends.14
Dr. Ignacio Durán: We need to generate materials with some basic information, and we need to make the patient understand that there has to be some clear communication adopted between the doctor, the healthcare provider, and the patient.1 That is one side of the story. The other side is the healthcare professional; we need to make them feel confident about the data that they have to share with the patient.15 Doctors need to understand that they need to have empathy when they are talking to patients.16 Sometimes, we are too busy, too stressed, and we have too many patients, and we bring the whole discussion just down to numbers.
How can we encourage more open conversations around all these aspects of the disease to ensure the best outcomes for patients?
Alex Filicevas: I think awareness plays such an important role and it is essential to create awareness about the disease, about bladder cancer itself, among the general public, at-risk populations and in primary care policy research.17 I think across the whole spectrum, the conversation about bladder cancer is not as broadly spoken about as other disease areas.18 So, it is essential to normalize talking about it and, specifically, its symptoms,19 which, in turn, will also help dissolve the sense of embarrassment that can be associated with talking about bladder cancer, or talking about a private area of our body.19
Dr. Ignacio Durán: From a HCP perspective, to make this conversation easier and to make the communication between healthcare providers and patients easier, I think we need a few things. First of all, we need to tell healthcare providers that this is key, that this is important, and that every patient has his or her own personal story.20
The second thing is we need to understand the value of time; this is something that we forget because in day-to-day practice, we have too many patients to see. But I think, at least, when it comes to major discussions, that could be the first visit, or that could be the visit before we're going to discuss a major therapeutic approach. I think we should, ourselves, reserve enough amount of time so that we are not in a rush so that we are able to create that atmosphere that is going to make that conversation more fluent.20
How can we empower patients to take a more active role in their disease management?
Alex Filicevas: Given the life-changing implications of the treatment decisions the patients have to make together with their healthcare team, I think it is crucial that patients are fully involved in the decision-making process of their treatment and feel comfortable in doing so.12 It is thus essential to help patients understand that there is an entire team in a multidisciplinary care environment that is there to make sure that they receive the best diagnosis, treatment, and care possible and that this team is behind them to help them achieve the best outcomes.21
Alex Filicevas: It is also crucial to create an environment where patients feel comfortable enough to discuss their questions and concerns that they may have about their treatment. Without that empowering environment for shared decision making where you can really have those open conversations and the sense of mutual decision making, patients rely a lot also on healthcare professional expertise, which, of course, is essential. This can sometimes lead however, to patients not adequately exploring all the consequences, for example, of the decisions about their care.22 As I mentioned, previously, patient groups too... this is an environment where they can also talk to peers who have been on that same journey, same treatment, and get that really first-hand experience and information from someone who's been through it personally.23
Dr. Ignacio Durán: It is not only healthcare professionals but also pharma companies that should more actively include patients in some of the discussions that we are currently having and in some of the activities that we are currently having, such as advisory boards. I think we should probably have patients more frequently included in our discussions.24,25 There are many courses, there are many one-day about bladder cancer research, and we need to include patients. We need to hear the voice of patients because, sometimes, we are discussing our approaches, outcomes, and limitations, but we do it from our perspective, and I think we need to incorporate their voice.24
What tools and resources might be useful to improve HCP and patient interaction during the consultations so that we can make sure that patients and HCPs are getting the most out of it?
Alex Filicevas: From my side, I think there are many resources and conversations that we have already had so far, ensuring the patients know that they can bring someone with them along to the consultation.26 I know in light of the COVID pandemic, there have been some limitations to this, but having someone come with the patient to support them, to have that conversation with the healthcare professional can really help them better understand and better absorb the information that they are receiving.27 We often hear from patients that they are not aware of this option, so I think encouraging patients to bring someone with them, if they have someone that they can bring with them, is a really helpful and easy thing to do to help patients.28
How does collaborative decision-making positively impact the patient experience and ultimately improve patient outcomes?
Dr. Ignacio Durán: Making decisions in such a way is going to be beneficial for both. I think we are moving from the old model where decisions were made from one side of the table to the current model where decisions need to somehow be agreed upon between the healthcare provider, healthcare professional and the patient who is on the other side of the table.12
One reason for this is that there are multiple treatment options available for one disease.29 This is when it is even more relevant to sit down with the patient and discuss their options. It is still relevant to have a conversation between the treating physician and the patient.30
Alex Filicevas: I think shared decision-making can often lead to greater patient satisfaction with their treatment decision and having a sense of choice.22 Dr. Durán mentioned that there is an increasing amount of choice that is becoming available to patients, not in all cases, but in an increasing number of cases,31 and it is a wonderful development for the patient community.
Fewer decisional regrets as well, better exploring all the options, and the impact of all these different treatment options on the patient's life, quality of life and affecting daily interests or activities that they want to undertake.32 I think, overall, their mental health outcomes would naturally improve given the greater participation and greater satisfaction. So, this could potentially create an overall increase in mental health and add, in a sense, to a greater quality of life too.22 I think increasing awareness among the general population can help lead to more timely diagnosis, and thus better care, and ultimately, better outcomes for patients as well.17
This greater public profile of bladder cancer can also have a tremendous impact on patient advocacy and perhaps lead to a more well-resourced workforce that has more time to spend with patients. So, I think there are a lot of different elements that can impact the high-quality care of patients, and I think that all of it stems from greater awareness about bladder cancer itself.13,17
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.
- Chung J, et al. Supportive Care in Cancer. 2019, Assessment of quality of life, information, and supportive care needs in patients with muscle and non-muscle invasive bladder cancer across the illness trajectory, 27:3877–3885
- American Cancer Society. Understanding Your Options and Making Treatment Decisions. Available at: https://www.cancer.org/treatment/treatments-and-side-effects/planning-managing/making-decisions.html. Last accessed June 2022.
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- Lewandowska A, et al. 2020. The Problems and Needs of Patients Diagnosed with Cancer and Their Caregivers, Int J Environ Res Public Health, 18 (1), 2020
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- Bessa A. et al, BMC Urology. Unmet needs in sexual health in bladder cancer patients: a systematic review of the evidence. 2020, 20, 64.
- Action Bladder Cancer UK. The impact of urological cancer on mental wellbeing. Website 2019. Available at: https://actionbladdercanceruk.org/news/news-categories/the-impact-of-urological-cancer-on-mental-well-being/#61. Last accessed June 2022.
- Cancer research UK. Bladder cancer – coping. Available at: https://www.cancerresearchuk.org/about-cancer/bladder-cancer/living-with/coping. Last accessed June 2022.
- Edmondson A et al. J Cancer Surviv, The patients' experience of a bladder cancer diagnosis: a systematic review of the qualitative evidence, 2017, 11(4):453-461.
- Cancer.net. Talking with your doctor about prognosis. Available at: https://www.cancer.net/blog/2014-08/talking-your-doctor-about-prognosis Last accessed June 2022
- Lewis S, et al. BMJ Open, 2020, Cancer caregivers’ experiences of prognosis in Australia: a qualitative interview study. 10, 2020
- Franklin, M. et al, Health, ‘Between knowing and doing person-centredness: A qualitative examination of health professionals’ perceptions of roles in self-management support’, 25(3), pp. 339–356 25(3), pp. 339–356.
- MacLennan, S, J. et al. Front Oncol. There is insufficient information and support around the emotional aspects of dealing with a bladder cancer diagnosis. 2020;10:465.
- Cancer.net, Why Peer Support Is Important for People Coping With Cancer. Available at: https://www.cancer.net/blog/201706/why-peer-support-important-people-coping-with-cancer. Last accessed June 2022.
- POLITICO. Common but neglected: bladder cancer needs research, policy & solutions. Available at: https://www.politico.eu/sponsored-content/common-but-neglected-bladder-cancer-needs-research-policy-solutions/ Last accessed June 2022.
- Berry L. L. et al. Journal of Oncology Practice. Role of Kindness in Cancer Care, 13, (11) 2017.
- World Bladder Cancer Patient Coalition. Raising Awareness. Available at: https://worldbladdercancer.org/our-work/raising-awareness/. Last accessed June 2022.
- BJU International. Bladder Cancer – Time for a higher profile in our region. Available at: https://bjui-journals.onlinelibrary.wiley.com/doi/epdf/10.1111/bju.13877 Last accessed June 2022.
- World Bladder Cancer Patient Coalition. World Bladder Cancer Awareness Month May 2022. Available at: https://worldbladdercancer.org/awareness-month/. Last accessed June 2022.
- Hardavella G, Aamli-Gaagnat A, Frille A, Saad N, Niculescu A, Powell P. Top tips to deal with challenging situations: doctor-patient interactions. Breathe (Sheff). 2017;13(2):129-135. doi:10.1183/20734735.006616
- ESMO. 763P The influence of multidisciplinary team meetings on treatment decisions in muscle invasive bladder cancer: A nationwide study in the Netherland. Available at: https://www.annalsofoncology.org/article/S0923-7534(20)40831-2/fulltext#relatedArticles Last accessed June 2022.
- NHS. Involving people in their own health. Available at: https://www.england.nhs.uk/wp-content/uploads/2017/04/ppp-involving-people-health-care-guidance.pdf. Last accessed June 2022.
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