EAU23 Patient Day shifts the focus to shared decision-making Poster Sessions and roundtables on survivorship, cystitis and patient-physician communication
By Kevin McBride
outcomes like a patient’s emotional state and understanding of their medical situation. It was agreed by all that this fundamental issue needs to be tackled early on in specialists’ medical journeys, potentially starting with training in medical school, and that the subject needs more research and specific, clear guidelines targeting patient education and communication. Surviving urological cancer and chronic disability from urological disease Survivorship was the focus of the day’s second roundtable, as the panel discussed the needs of patients suffering from chronic urological illness and addresses strategies that empower them to manage their disability in partnership with healthcare professionals. Dr. Christian Schulz-Quach discussed the mental health consequences of survivorship and why urological patients are particularly vulnerable. “Now turn to your neighbour and discuss your genitals” Dr. Schulz-Quach directed the audience to demonstrate the sociological element to protecting our genitals. Urological patients are particularly hesitant to actively engage, so physicians need to open the dialogue and understand the mental health issues their patients may be experiencing and additionally must give communication tools to help handle shame. “In today’s world it seems irresponsible and patient- unfriendly to keep changing the name of a disease. Time for global consensus on the name and definition, and a truly patient-centric approach.” Further compounding breakdowns in communication are the taboos around discussing sexual dysfunction or conditions in gender nonconforming persons. Erik Briers emphasised the need to adequately inform patients about the risks to sexual health when treating male cancers. “Libido loss is not a side effect, but a consequence of ADT.” Lydia Makaroff from the World Bladder Cancer Patient Coalition (WBCPC) discussed how these problems are amplified in gender nonconforming
This year patients took the spotlight at EAU23, with representation across the scientific programme, three roundtables, and the first EAU Patient Advocacy Medal of Excellence. Roundtable discussion: Patient-physician communication Dr. Rachel Giles from the International Kidney Cancer Coalition (IKCC), winner of the EAU Patient Advocacy Medal of Excellence, built on her momentum by opening the day’s first roundtable discussion “Patient-Physician Communication” by underlining how patient engagement interventions save lives. There is a large body of RCT-based evidence that patient engagement interventions improve qualitative outcomes, including quality of life, anxiety, depression, compliance and fatigue. Data suggests a survival benefit for engaged patients, and early data is very promising, but the interdisciplinary consensus at the first roundtable of EAU23’s Patient Day agreed that the subject demands greater attention and additional research is required. It is crucial for both medical experts and patients to recognise that contemporary patient advocacy must take a comprehensive and holistic approach, encompassing not only direct support for patients, but also guidance for research initiatives and influence over the healthcare and regulatory policies that affect patients' lives. To help understand where patient-physician communication breaks down, social psychologist Tamás Bereczky pointed to the hierarchical nature of healthcare and how that facilitates barriers to functional patient-physician communication. The healthcare system often places doctors on the top of a hierarchy, while patients are often “reduced to a number or a line on an Excel sheet.” This creates a system of epistemic injustice, as the patient’s experience can be invalidated on the basis of their hierarchical status. The roundtable concluded with some best practices should include tackling paternalistic and hierarchical approaches, educating both physicians and patients, limiting jargon and using empathy. Patient experts recommended shifting from only considering “hard” outcomes, like time limits and financial constraints, to including soft
Patient lounge in the EAU23 Exhibition
patients, particularly when their condition does not align with their gender.
The Patient Office further had representation across one plenary session: Controversies on EAU Guidelines II: Testicular and bladder cancer and stones, by Rob Cornes from ORCHID and two thematic sessions: Locally advanced BCa: Misconception of informed consent, by Lydia Makaroff from the WBCPC and EAU Guideline session: Non-neurogenic female LUTS, by Monica De Heide from BekkenBodum4All. The Patient Lounge served as a homebase for patient advocates to network, and recharge for more sessions. Patient Day at EAU23 was a resounding success and the Patient Office is already hard at work ensuring more is to come. Urological patients’ presentations 2022 Global Patient Survey: Reported experience of diagnosis, management, and burden of renal cell carcinomas in >2,200 patients from 39 countries • R achel Giles • Best Patient Poster Presentation: First Prize A comprehensive summary of patient and caregiver experiences with bladder cancer: Results of a survey from 49 countries • A lex Filicevas • Best Patient Poster Presentation: Second Prize How can we improve patient-clinician communication in men diagnosed with prostate cancer? • Ailbhe Lawlor • Best Patient Poster Presentation: Third Prize Commitment to collaboration in continence care • Lynne Van Poelgeest-Pomfret Importance of shared decision making in prostate cancer to ensure that patients and clinicians recognize and address patients’ treatment goals • Ernst-Günther Carl Collection of patient reported outcomes in daily clinical practice – experiences from a prostate cancer network • Lionne Venderbos
Roundtable discussion: What is cystitis? Ms. Jane Meijlink from the International Painful Bladder Foundation (IPBF) opened the discussion with a monologue on the convoluted, and often contradictory web of taxonomy and nomenclature of cystitis. The history of misunderstandings around cystitis led to an intricate and misleading vocabulary around cystitis, confusing for even experienced physicians, let alone patients. Interstitial Cystitis has a wide array of debilitating symptoms that can be easily misdiagnosed due to their lack of uniformity as Anna De Santis from the European Reference Network (ERN), eUROGEN, discussed. Between the dizzying array of terminology and symptoms, patient engagement and physician awareness are crucial to improving patient outcomes. Patient representation across the congress The Patient Office participated in multiple sessions throughout the congress. The Patient Office hosted a sold out Clinical Leadership Development Workshop: Educating clinicians on the value and benefits of patient empowerment and engagement.
Impressions from Patient Day
Patient Advocacy Medal of Excellence – R. Giles
European Urology Today
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April/May 2023
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