Table of Contents
How sharing the right information at the right time can save lives
EAU Patient Day’s Roundtable on prostate cancer results in thirteen calls to action
Eamonn T. Rogers, EAU Patient Office Chairman, Galway (IE)
Hein Van Poppel, University Hospital Leuven, Leuven (BE)
Every year, almost 450,000 men across Europe are diagnosed with prostate cancer, leading to 92,000 deaths1. Despite prostate cancer being the most common cancer in males throughout Europe, three quarters of the European men admitted that they have limited knowledge about the function of the prostate and its propensity to become diseased, particularly from prostate cancer2.
Patient awareness of the risks of serious urological disease based on educated interpretation of clinical symptoms, signs, and laboratory tests, coupled with the availability of targeted health services, are leading factors in the early diagnosis of urological conditions. Most men are uncomfortable talking to peers about their urinary and sexual health. Many tend to suffer in silence, rather than discuss “taboo” diseases such as prostate cancer. Most deaths in male cancers occur because many men do not address their conditions in time, sadly continuing to ignore symptoms and delay seeing their doctors, and/or cannot access the appropriate supportive health service.
Also, all doctors must be adequately educated and informed through continuous professional development so as not to squander the opportunity to inform and address relevant health concerns when a man presents with concerns about his prostate. The doctor’s approach must focus on the timely detection of prostate cancer.
Therefore, it is important to ask:
What roles do patients and healthcare providers share during visits concerning the diagnosis and treatment of prostate cancer?
What are the responsibilities of the stakeholders at each stage of a prostate cancer patient’s journey in terms of diagnosis delivery, patient information, shared decision making, and treatment?
Do healthcare professionals (HCPs) ask the right questions and disclose that information necessary to address the patients’ needs?
Similarly, do patients voice the questions and disclose the right information that allows the HCP to address their needs?
Understanding how patients and HCPs communicate and what information they share at a given time is important for several reasons.
- It helps us determine if and where there is a lack of knowledge.
- It also helps us determine who should share critical information and at what stage, with a targeted strategy to overcome issues related to this as the end goal.
- Finally, and most critically, published evidence shows that successful patient engagement leads to better treatment outcomes.
Roundtable on prostate cancer
To gain more knowledge and insight into the physician-patient communication, some of the principal stakeholders in a man’s prostate cancer journey participated in the “Roundtable: Prostate Cancer, The Road to Successful Intervention”, which was broadcast on EAU Patient Day, during the virtual Annual EAU Congress (EAU21), on Friday 9 July 2021.
The Roundtable participants consisted of:
- A spouse of a prostate cancer patient who presented with advanced prostate cancer at first diagnosis
- A general practitioner
- A healthy man
- A prostate cancer patient on active surveillance
- A prostate cancer patient on androgen deprivation therapy
- Two urologists
Roundtable participants (in order of appearance):
- S.A. Clark-Wehinger, Meudon (FR)
- M. Rogan, Galway (IE)
- R.J.A. Van Moorselaar, Amsterdam (NL)
- M. McRory, Roscommon (IE)
- L. Moris, Leuven (BE)
- C. Pieri, Milan (IT)
- R. Wassersug, Vancouver (CA)
- A.S. Merseberger, Lübeck (DE)
The session was chaired by Hein Van Poppel, Chairman EAU Policy Office and Eamonn Rogers, Chairman EAU Patient Office.
A number of questions were formulated around:
- Awareness, education, and communication
- Early detection
- Active surveillance
Watch the video of the Roundtable Discussion
The Roundtable resulted in the following calls to action:
Awareness, education and communication
- Improve awareness and educate the public about prostate cancer communicating through (local) awareness and advertising campaigns, screening programmes, and information made available at the GPs office.
- Develop an algorithm whereby HCPs can navigate the steps of a prostate cancer patient’s health journey to ensure all the boxes in terms of information provision have been ticked.
- Partners are often more actively engaged in seeking information about the disease and available treatments, as a coping strategy to reduce fears and anxiety, but also to be able to care for and support the patient during the treatment decision-making process. HCPs should recognise this and encourage partner participation, to incorporate the partner perspective and help couples navigate educational materials and resources according to their information needs and preferences3.
- Patients need to fully disclose their medical history, any previous surgeries and use of medication. They need make sure to bring all relevant documentation to the consultation.
- Individual, case-related interdisciplinary coordination between GPs, cardiologists and urologists should be encouraged.
- Provide internationally recognised, specific guidelines for GPs to eliminate the lack of consistency in the approach to prostate cancer timely detection.
- A uniform approach to prostate cancer screening is needed from European healthcare systems. This challenges the EAU to engage with national societies and EU policymakers of healthcare policy, to implement internationally agreed methods of alerting patients to prostate cancer. While there may be regional differences in policy concerning prostate cancer screening, health services should at least educate patients and HCPs on the detection and treatment acknowledging the associated risks and benefits, so the patient can make an informed choice.
- Inform men about the tests available for early detection of prostate cancer: PSA testing, digital rectal examination, and the availability of prostate cancer risk calculators. This was stated to facilitate engagement.
- To reduce the potential financial burden caused by overdiagnosis and overtreatment, urologists should adopt an intelligent risk stratified screening method which consists of the use of risk calculators, testing for biomarkers, and the use of MRI in patients with an elevated PSA, instead of undergoing biopsy as the next step.
- Prostate cancer patients who are recommended active surveillance as a treatment option should be well informed and educated about this type of treatment and offered psychological and peer to peer support to ensure adherence to the strict follow-up scheme.
- Men should be better informed about prostate cancer treatment options and be actively involved in the treatment decision-making process.
- Prostate cancer patients should be made aware of the cardiovascular risks when being offered androgen deprivation therapy and should be given the option of a cardiovascular health assessment prior to starting treatment.
- Patients with prostate cancer are very willing to participate in clinical trials if there is a relevance to their condition and if the risks and benefits of the trial are properly explained.
The Roundtable shows there are lessons to be learned when it comes to effective communication between HCPs and patients. Both HCP and patient awareness about prostate cancer, particularly its early detection, and treatment saves lives. It is therefore imperative that allied HCPs, GPs, urologists, oncologists, and cardiologists join forces and work alongside each other to adopt a patient-centred approach, to educate and help patients and partners during the treatment decision-making process, and to keep patients as healthy as possible during and after their cancer treatment.
Persuading men to take their health seriously presents a serious challenge. They need to have a better understanding of the risk and symptoms of prostate cancer, and they should be encouraged to seek support from a medical professional if they suspect anything unusual. This challenges health service providers and professional bodies as well as individual stakeholders to improve communication using modern methods of information technology e.g. EAU Patient Information website4.
Partners should actively participate in conversations with their male partners and their doctors. Data on the importance of peer-to-peer support from fellow prostate cancer sufferers in patient support groups was presented during the Patient Poster session at EAU21 and it showed that peer support is crucial for patients recently diagnosed or undergoing treatment5.
The Roundtable highlighted the need for an integrated approach to be taken by healthcare providers when informing men about prostate cancer as a disease, particularly its early detection, treatment strategies and their risks and benefits. There is a particular need to provide professional services that address the unmet needs of patients, as was shown at EAU215.
- ECIS – European Cancer Information System. 2018. Incidence and Mortality Estimates. Available at: https://ecis.jrc.ec.europa.eu/
- Urology Awareness Survey. EAU Press Release 2018 [Conducted July 2018] https://urologyweek.org/content/uploads/EAU-press-release_urology-awareness.pdf
- Aasthaa Bansai, et al. Information seeking and satisfaction with information sources among spouses of men with newly diagnosed local-stage cancer. J Cancer Educ. 2018 April ; 33(2): 325–331. doi:10.1007/s13187-017-1179-6.
- Patient Poster Session. EAU Virtual Congress 2021. https://bit.ly/3zJXXpB
- EAU Patient Information website, patients.uroweb.org
This project was funded by Ferring Pharmaceuticals. Its content has been independently developed and approved by the EAU Patient Office.