Patient Voices and Shared Decisions: Key Themes from EAU Patient Advocacy Day

The day is also a chance to hear from often overlooked issues that patients face. Whether it’s how cultural context affects research design studies, or the concerns that couples face when a male partner is diagnosed with penile cancer, the day centred on a range of unique conversations that connected Patient Advocates and healthcare workers to help cultivate a more inclusive and nuanced future for patient concerns.

Patient Advocacy Day began with the first roundtable discussion titled ‘BALANCE: Embracing diversity in prostate cancer - Our journey so far’, an international initiative seeking to better understand how prostate cancer affects Black men of African and Caribbean ancestry, who are disproportionately affected by the disease yet remain underrepresented in research.

Speakers highlighted how experiences of prostate cancer vary widely depending on geography, culture, and access to healthcare. Dr Manuel Caitano Maia (Belem, BR), speaking from Brazil, explained that the country’s vast size leads to major differences between regions. Much of the country’s medical research and infrastructure is concentrated in large cities, leaving some communities with limited healthcare access and lower levels of health literacy.

Mr Chas Warning (Paramaribo, SR) shared perspectives from Suriname, where strong community ties coexist with significant stigma around prostate cancer. Cultural expectations around masculinity can make it difficult for men to speak openly about diagnosis, sexuality, and the emotional consequences of the disease. Advocates therefore encourage patients not to attend medical appointments alone and to involve family members in their care.

The discussion emphasised that meaningful research must reflect these diverse realities. Patient-reported outcome measures should consider local circumstances, cultural norms, and environmental factors. Even seemingly simple survey questions can be misleading if they fail to account for context.

Trust was another key issue. Building trust within communities, particularly those historically underrepresented in research, requires culturally relevant messaging and engagement with trusted local figures. Panelists stressed that studies should begin with a clear purpose that communities recognise as meaningful. When people understand why research matters and how it may benefit them, participation becomes more likely.

The second roundtable of Patient Advocacy Day explored shared decision-making (SDM) in bladder cancer care. While widely supported in theory, participants acknowledged that implementing SDM in clinical practice remains challenging.

Ms Melanie Costin (Chinnor, GB) highlighted a common issue in consultations: patients often say they understand everything discussed, even when they do not. The complexity of cancer treatment means that a single appointment is rarely enough for patients to fully absorb the information presented to them. Clinicians can support patients by directing them to additional resources, including patient organisations, peer support groups, and specialist nurses.

Education was seen as key to empowering patients. As patients learn more about their condition and treatment options, they gain confidence to ask questions and actively participate in decisions about their care. Peer support can also play an important role. Conversations between experienced patients and those newly diagnosed can provide reassurance and practical insights that clinicians alone may not be able to offer.

The roundtable also examined barriers to effective SDM across Europe. These included time constraints, the complexity of treatment decisions, limited training in communication skills, and insufficient institutional support. Some speakers emphasised the importance of empathy training for healthcare professionals, noting that communication skills can significantly influence patient wellbeing.

Another challenge is the need for accessible information tools. Written materials remain important, particularly for older patients who may not use digital platforms, but other formats such as videos, webinars, and podcasts are becoming increasingly valuable. Ensuring that resources are available in multiple languages is also essential for supporting diverse patient populations.

The third roundtable focused on shared decision-making in localised kidney cancer. Although the concept is widely endorsed, global patient data suggest that it is not consistently achieved in practice.

Survey results indicate that only about half of patients feel involved in treatment decisions as much as they would like. Similarly, many patients report difficulty understanding treatment options during consultations. These findings point to a gap between the ideal of shared decision-making and the reality experienced by patients.

Participants discussed several reasons for this gap. Busy clinics and limited consultation time can make in-depth discussions difficult. In addition, the diagnosis of cancer itself can be overwhelming. Patients may struggle to process complex information while coping with fear and uncertainty.

Research presented during the session examined whether training clinicians to implement SDM could improve outcomes. The study found improvements in several aspects of the process, including increased consultation time and more structured discussions. However, patients’ perceptions of their involvement did not change significantly, highlighting how complex the issue remains.

Power dynamics in the consultation room also play a role. Many patients initially feel intimidated when speaking with specialists, which can make it difficult for them to express preferences or ask questions. Panelists suggested that allowing time for reflection and spreading discussions across multiple appointments may help patients feel more comfortable and engaged.

A multidisciplinary approach was also seen as beneficial. Involving different specialists, such as radiologists and nurses, can provide patients with a broader understanding of their options and create a more collaborative decision-making process.

The next roundtable session explored sleep deprivation and its connection to urinary symptoms such as nocturia. Many patients wake repeatedly during the night to urinate, which can severely disrupt sleep and overall quality of life.

Pannelists explained that sleep disorders and urinary symptoms often influence each other. Conditions such as obstructive sleep apnoea can cause nocturia, while insomnia may worsen symptoms by reducing sleep quality.

The distinction between insomnia and sleep deprivation is important. Insomnia refers to difficulty falling or staying asleep, whereas sleep deprivation occurs when sleep time is restricted despite the ability to fall asleep easily. Both conditions can affect patients who wake frequently to use the bathroom.

Poor sleep has wide-ranging consequences. It can worsen pain perception, strain relationships, and increase the risk of depression. Cognitive behavioural therapy for insomnia (CBT-I) was highlighted as an effective treatment that can significantly improve sleep patterns.

Speakers emphasised the need for healthcare professionals, particularly general practitioners, to ask patients about sleep quality during consultations, as sleep problems are often overlooked despite their significant impact.

The final roundtable of the day focused on the psychological and social consequences of penile cancer, a rare disease that carries significant stigma and emotional burden.

A global patient survey revealed several concerning findings. John Osborne (Nottingham, UK) spoke on how many men can wait up to more than a month before seeking diagnosis, and fewer than half are offered psychological support. The disease also has profound effects on relationships and sexual wellbeing.

Patients and partners shared powerful personal experiences. For some, the diagnosis and treatment process felt overwhelming, with multiple medical appointments and procedures occurring in rapid succession. Rob Cornes (London, GB) described the emotional impact of changes to their bodies and sexuality, which can affect identity and self-esteem.

Isolation was identified as a major challenge. Because penile cancer is rare and often not openly discussed, many patients feel alone in their experience. Stigma and embarrassment can prevent men from seeking support or speaking openly about their condition.

Psychosexual counselling was highlighted as an important but often limited resource. Participants emphasised the need for earlier psychological support and better access to specialised counselling services. Support networks and patient communities can also help reduce feelings of isolation by connecting individuals who share similar experiences.

Across all the roundtables, a common message emerged: meaningful progress in urological care requires stronger collaboration between patients, clinicians, researchers, and advocates.

Whether discussing research participation, treatment decisions, sleep health, or psychological support, participants repeatedly stressed the importance of listening to patient experiences. Trust, communication, and accessible information are essential for creating healthcare systems that truly meet patients’ needs.

Patient Advocacy Day served as a reminder that medical advances alone are not enough. Improving outcomes also requires understanding the human side of healthcare - ensuring that every patient feels heard, informed, and supported throughout their journey.