EAU23 Patient Day shifts the focus to shared decision-making

Poster Sessions and roundtables on survivorship, cystitis and patient-physician communication

By Kevin McBride

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 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” patients, particularly when their condition does not align with their gender.

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.

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.

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.

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

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.

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

Rachel 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

Alex 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

Prof. Oliver Hakenberg Section editor Rostock (DE)

Oliver.Hakenberg@ med.uni-rostock.de

Case study No. 74

This 70-year-old man underwent left radical nephrectomy with cavotomy and extraction of a long intracaval tumour thrombus extending into the atrium in April 2022. The operation was performed together with cardiac surgeons and went well.

The histology was clear cell renal carcinoma and some parts of the tumour thrombus had been adherent to the vena cava. Post-operative recovery was prolonged and complicated by a pulmonary embolism.

Now the patient presents with a follow-up CAT scan showing extensive recurrence of the intracaval tumour thrombus, again extending into the right atrium.

Discussion point:

What management is possible and advisable?

Surgery with or without neoadjuvant treatment

Comments by Prof. Axel Heidenreich Köln (DE)

Reflecting the medical data given and the 2 CT images presented, we have to consider the following issues with regard to the most appropriate second-line management

• the tumour thrombus was removed completely during the first surgery so recurrence could be due an infiltration of the wall of the inferior vena cava resulting in subsequent re-growth

• just interpreting the abdominal CT image, the left renal vein seems to be in place with a local recurrence, which is quite unique since the vein needs to be resected including the left caval orifice of the renal vein at time of thrombus surgery

• postoperative pulmonary embolism could have been due to tumour thrombus material or due to a classical apposition thrombus

• postoperative recovery was prolonged for reasons we do not know (blood loss, comorbidities, SIRS, etc.), but which have to be integrated in the decision-making process with regard to the next step of treatment

• postoperative adjuvant immune-oncological therapy with pembrolizumab was not delivered

The next step of treatment could be first line immune-oncological therapy, redo surgery or a combination of neoadjuvant immuno-oncological therapy followed by surgery.

What I need to know prior to the next step of therapy

• pre-existing comorbidities and physical fitness of the patient.

• presence, localisation and extent of the potential infiltration of the wall of the inferior vena cava. The thrombus looks like a floating thrombus in the right atrium, but I cannot identify the true extent of the intracaval thrombus. Therefore, MRI scan and an transoesophageal echocardiography should be performed since this information will dictate the primary treatment approach. Infiltration of the IVC above the diaphragm would be a severe contraindication for a surgical approach.

• presence of or absence of metastatic systemic disease

Case provided by Prof. Oliver Hakenberg, Dept. of Urology, University Hospital Rostock, Germany.

E-mail: oliver.hakenberg@med.uni-rostock.de

Treatment options

Surgery is an option if the patient is in good general health and if the thrombus is only partially infiltrating the IVC wall below the diaphragm. In this scenario, the IVC can be replaced by a venous prosthesis (Figure 1). Our own data on redo surgery of intracaval relapses of tumour thrombi are good with long-term cure in all patients. Surgery will effectively prevent future complications to local growth such as blockage or infiltration of the right renal vein, blockage of the liver veins (Budd Chiari syndrome), repetitive haematuria, to name a few. However, surgery in this situation is complicated, extensive and needs the presence of a multidisciplinary team involved in a 2-cavitary approach with cavotomy and cardiopulmonary bypass surgery. A mere transperitoneal of thoraco-abdominal approach (which is our preference in first line surgery), will not be able to completely resect the thrombus. The perioperative mortality is in the range of 2-5% and 90 day mortality is in the range of about 15%. Due to the high risk of systemic relapse, adjuvant immuno-oncological treatment with pembrolizumab should be initiated postoperatively.

Neoadjuvant systemic therapy with the combination of ipilimumab/nivolumab or PD-L1 inhibitors plus multityrosine kinase inhibitors might be another option. However, response rates are low and the tumour thrombus shrinkage is reported in the range of about 10%, which usually does not result in significant reduction of the difficulties of surgery. Treatment-associated side effects have to be considered as the fact that any progression will result in the impossibility to completely resect the thrombus with the negative consequences reported above. If a partial response would be achieved after four cycles of treatment, surgery can be performed with a lesser rate of complications.

Stereotactic ablative radiation therapy might represent an individual and still experimental approach. However, the current series describe a response rate of 58% with a palliation of symptoms in all patients. Treatment associated side effects are low and only grade 1-2 side effects have been described. The median overall survival is 34 months which is not poorer as compared to surgery alone. Depending on the extent and size of the residual tumour thrombus, second line surgery can still be performed after radiation therapy.

In my view, redo surgery represents the treatment modality with the highest chance for cure, but also with the highest probability of severe, life-threating complications.

A surgical approach with assistance of both the liver transplantation and cardiothoracic teams

Comment by Prof. Kilian Walsh Galway (IE)

The original surgery was performed with the assistance of cardiothoracic surgery and I assume the patient was put on cardiopulmonary bypass for the procedure.

As you stated, technically the procedure went well and the patient has recovered from his pulmonary embolism. The present CAT scan shows caval recurrence, the options include a biotherapy regimen with a combination of oncological agents, but I would favour a surgical approach and utilise the assistance of both the liver transplantation and cardiothoracic teams.

The liver transplant team usually have donor IVC from a previous retrieval, but if they do not, they can utilise a PTFE graft. After mobilisation of the liver they can resect the IVC and replace it with donor IVC tissue or a PTFE graft. When the IVC is clamped the tongue of tissue in the atrium can fall back into the IVC with a reduction of flow and a vascular clamp can be applied above the level of the thrombus. This will give a 30 to 40 minute window to resect and replace the IVC with graft and if necessary anastomose the left renal vein back into the graft. However, if you are unable to get a clamp above the level of the thrombus, then the patient can be put on cardiopulmonary bypass so that the cardiothoracic team can open the atrium and milk the thrombus back into the IVC. This gives the liver transplant team more time for resection and anastomosis, and they will not have to work against the clock.

I know this is possible as we performed such a case when I was a Consultant Urologist at King's College Hospital in London and the case went well. Sadly, my present institution in University Hospital Galway does not have liver transplantation, so I would have to refer to a suitable centre, but I believe surgery is the best option for this patient.

The Clinical challenge section presents interesting or difficult clinical problems which in a subsequent issue of EUT will be discussed by experts from different European countries as to how they would manage the problem.

Readers are encouraged to provide interesting and challenging cases for discussion at h.lurvink@uroweb.org

Case study No. 75

A 28-year-old man complained of dysuria 3 weeks after a ureteroscopy with fragmentation of a ureteric stone. A urethrogram showed a bulbar stricture and direct vision internal urethrotomy was performed. Due to an intraoperative false passage, the indwelling urethral catheter was left in situ for one week. Three months later, the patient still has a weak urinary stream. The current urethrogram is attached.

Discussion point:

• What treatment is advisable?

Case provided by Dr. Amin Bouker Coral Médical, Tunis, Tunisia E-mail: aminbouker@gmail.com

Case study No. 74 continued

The patient underwent surgery together with the cardiothoracic team. With cardiopulmonary bypass, the intracaval thrombus was removed; however, the intraatrial part of the thrombus was adherent to the wall of the atrium and had to be dissected after opening the atrium. Thus, the resection had to be considered incomplete at least on the microscopic level (R1).

Histology again showed renal cell carcinoma, partially necrotic. The patient recovered well from surgery and was discharged after 8 days. Adjuvant immunotherapy was recommended.