Bladder Cancer Special Interest Group: The importance of the patient voice

The World Bladder Cancer Patient Coalition joined the European Association of Urology Nurses Annual Meeting 2022. Alex Filicevas, WBCPC Executive Director, joined the session Bladder Cancer: The Importance of the patient voice, Chaired by Dr Bente Thoft Jensen. The presentations and discussion focused on the importance of a meaningful patient-healthcare professional relationship with the ambition of improving patient outcomes and care experience. Speakers offered different views from their individual professional perspectives, helping to highlight the role of the patient voice in bladder cancer patient care and professional societies such as EAU and EAUN.

Patient voice driving improvements in bladder cancer care
Alex Filicevas, Executive Director, World Bladder Cancer Patient Coalition (Belgium)

Alex Filicevas presented some early data from the Global Bladder Cancer Patient Survey, highlighting patient information needs. The survey uncovered significant information gaps that bladder cancer patients face, especially at the time of diagnosis and treatment decision stage. Alex stressed the findings that patients are not signposted enough to patient groups and peer-support networks, which can be helpful in supporting bladder cancer patients on their journey.

Patient needs and worries when undergoing radical cystectomy
Melanie Costin, Support Services Manager, Fight Bladder Cancer (United Kingdom)

Melanie Costin, Support Services Manager, Fight Bladder Cancer and a bladder cancer patient herself, emphasised the importance of bladder cancer support groups. Melanie noted that bladder cancer organisations are critical in ensuring that patients do not feel isolated and have a place to turn to for support, guidance and information.

Challenges in bladder cancer care
Dr Ignacio Duran, Hospital Universitario Marques de Valdecilla in Santander (Spain)

Dr Ignacio Duran provided the oncologist’s perspective and acknowledged that there needs to be better communication between healthcare professionals and bladder cancer patients. Due to the extremely high-paced environment that doctors must operate in, there is not enough time spent talking to patients, understanding their needs or explaining in full various procedures or treatment options. Dr Duran emphasised the need to work together with all healthcare professionals involved in bladder cancer patients’ care as well as patient support organisations.

Bringing patient voice into practice
Eamonn Rogers, Chairman, EAU Patient Information (The Netherlands)

The last presentation of the bladder cancer session was given by Dr Eamon Rogers, Chairman of the EAU Patient Information office, who highlighted the need for patients to be much more involved across the research and care continuum – from the research phase to the development of treatment guidelines and beyond. The EAU has started working closely with patients, and during the EAU21 Annual Congress Patient Poster Session, EAU has identified over 50 unmet needs that patients raised. To address this, the European Association of Urology is developing multiple resources for patients, which are based on EAU guidelines to ensure information is scientifically accurate, relevant and accessible in multiple formats and languages.