“The ‘P’ Word: the challenge of urinary problems in people living with prostate and bladder cancer

The event was a collaboration between the European Association of Urology and members of its Patient Advocacy Group, namely Europa Uomo, the World Bladder Cancer Patient Coalition (WBCPC), and the World Federation of Incontinence and Pelvic Problems (WFIPP), along with key partners, the European Cancer Organisation and Eurocarers. The aim of this policy discussion was to raise awareness of the important impact that these conditions can have on physical, mental and emotional well-being of cancer patients and also those of their families and carers, following the “The ‘P’ Word” publication.

MEP Sokol hosted and opened the event by highlighting the significant investment and prioritization of cancer in the EU, and how there are a number of proposals under Europe’s Beating Cancer Plan which will respond to the needs of EU citizens and patients. The update of the EU Cancer Screening Recommendations on Cancer, for example, will include Prostate Cancer. Alex Filicevas from World Bladder Cancer Patient Coalition and Prof Hein Van Poppel from the EAU co-chaired the event.

Andre Deschamps from Europa Uomo presented the results of their patient-led survey, EUPROMS, which has collected the patient-reported outcomes of over 5000 prostate cancer patients across Europe. The outcomes of the survey included urinary incontinence. The prostate cancer patients also shared their lived experience with basic but significant challenges such as public toilet availability, and of sanitary bins in male toilets.

We also heard from Laura Magenta and Anna Pangolini from the Associazione PaLiNUro who talked through personal experience and patient surveys of bladder cancer patients, and the struggles with finding appropriate incontinence products. Mary Lynne Van Poelgeest-Pomfret of WFIPP represented the perspective of people impacted by incontinence and pelvic pain, and discussed the stigma that comes with this challenging condition. WFIPP are committed to working with multiple stakeholders, including professionals, scientists and industry, to find sustainable continence solutions. Claire Champeix from Eurocarers made the links between Europe’s Beating Cancer Plan and the EU Care Strategy, which is a non-binding but ambitious strategy which includes the role of informal carers – the focus will be on encouraging full implementation by EU member states and regions.

Prof Philip Van Kerrebroeck from the EAU Policy Office introduced a strategic approach to responding to these challenges under the theme of cure, care and prevention. He highlighted that continence care is not a purely medical challenge, but requires a system-wide approach in partnership with multiple stakeholders. The challenges are particularly well aligned with the EU agenda responding to demographic change (ageing), health, care, research and a sustainable, circular European economy (the Green Deal).

The theme of sustainable continence care was expanded on by the lead researcher, Tiina Vaittinen, involved in the Tampere University ‘PadProject’. This initiative seeks to address the challenges of unsustainable use of continence pads, which are not meeting the needs of patients and are causing a significant problem for the environment in terms of plastic waste. The response must place the patient at the centre while addressing the multi-stakeholder and system-wide changes that need to take place.

Paolo Guglielmetti, from DG Sante in the European Commission, presented the Commission’s updated recommendations on early detection and the inclusion of prostate cancer to this. This addition of prostate cancer has already been backed up with EU4Health funding to start pilots and the development of guidelines. He also highlighted other areas of the Cancer Plan which will be important for cancer patients, such as the work to address Cancer Inequalities, Comprehensive Cancer Centres, the Interspecialty Cancer Training Scheme and initiatives to support cancer survivors.

Finally, Christine Chomienne, Vice Chair of the European Commission’s Cancer Research Mission Board, presented the aims of the research mission that by 2030, 3 million lives will be saved living longer and better. A central element of the research mission is citizen and patient engagement, and a number of the current and previous calls have been focused on frameworks which support a patient-centric approach, including defining a framework for patient-reported outcomes.