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UPDATE
n°154 | September 30, 2021
In this issue:

New active surveillance resource from Europa Uomo

Videos and transcripts of expert opinion and patient experience available
25 Sep 2021

New Spanish resource for those affected by prostate cancer

Europa Uomo member organisation produces Spanish language videos
20 Sep 2021

Prostate patients encouraged to have their say at EAU Congress

Patient sessions at this year’s event highlighted many unmet needs
13 Sep 2021

Cancer deaths in Europe cut by prevention measures

Thousands of prostate cancer deaths to 2050 will be avoided by screening
5 Sep 2021

Advanced prostate cancer treatments not linked with mental decline

New study finds no evidence of reduced cognitive function after treatment for metastatic disease
30 Aug 2021
Prostate Cancer and Treatments

Moving Towards Safer Prostate Biopsies

ASPI, Active Surveillance Patients International, recorded their last virtual meeting on August 28, on ‘Moving Towards Safer Prostate Biopsies’.

The video features:

Agnes Gulbrandsen, a Norwegian hairdresser, who wanted to know why her father died from a brain clot days after undergoing a transrectal prostate biopsy.

Her father’s urologist, Dr. Truls Bjerklund Johansen, who proved the link and did a study showing that patients could avoid sepsis and infections by undergoing transperineal procedures.

Dr. Rick Popert, one of the leaders of the TRexit movement to abandon transrectal exams, speaks about how he helped discontinue transrectal procedures in much of the UK.

Dr. Jeremy Grummet, an Australian urologist, talks about how his country’s health plan is encouraging transperineal biopsies. Dr. Grummet is Director of Clinical Research of the Urology Unit at Alfred Health, and a urology professor at Monash University in Melbourne, Australia.

Click here to see the video.

Europa Uomo News

EUPROMS II

Europa Uomo is launching a new quality of life study, EUPROMS II, to build on the massive interest generated by its 2019-2020 EUPROMS (Europa Uomo Patient Reported Outcome Study) research.

The original EUPROMS study drew on nearly 3,000 survey responses to provide important findings about life after prostate cancer treatment, including the fact that half of men say that sexual functioning has been a significant problem for them and that 42% of men are left anxious or depressed.

EUPROMS II will provide more detailed information that will help answer vital questions:

  • Is the quality of life of men with prostate cancer better if early detection programmes are in use?
  • Is quality of life better if men are treated in multidisciplinary centres?
  • To what extent does quality of life decline in the later stages, when patients are receiving ADT and chemotherapy?

EUPROMS II will follow the same structures as EUPROMS I, using an online questionnaire publicised to patients throughout Europe. People who responded to the first questionnaire are being encouraged to respond again. Answers will remain confidential. The analysis will again be conducted by urology researchers at Erasmus MC, Rotterdam.

The translation of the EUPROMS II survey in the various languages is now finished by the translation agency. It is now up to our survey developer, Nuno Azevedo, to compile the survey in the different languages.

A virtual launch meeting will be organised on Monday, October 25th, at 16:00.

New address and telephone number of the EUomo Secretariat

OCA, our landlord, has moved into a new office on the ground floor located in the Leopoldstraat no 34 in Antwerp last September 24th, 2021. Due to the relocation of the seat of OCA to the new location, the seat of Europa Uomo will also be transferred on September 24, 2021 to the new office at Leopoldstraat 34 in 2000 Antwerp.

At the last Board meeting, no member of Board present has objected to the change of the seat of our association. Consequently, the change on the seat of the non-profit organization Europa Uomo is approved by the Board.

Please send any correspondence to the new address:
p/a OCA, Leopoldstraat 34, 2000 Antwerp – Belgium

Our telephone number is changed to +32 3 645 94 44.

Next Board meeting

The Board has decided to organize the next meeting in-person on November 25, 2021 during the EMUC meeting in Athens.

Louis Denis: One of urology’s most influential and patient-facing physicians

Please read this article on Louis Denis, written by our communication advisor Simon Crompton for CancerWorld.

Items of Interest

NASPCC Webinar "What's New in active Surveillance"

The NASPCC, National Alliance of State Prostate Cancer Coalition, is organising a Webinar on “What’s New in Active Surveillance in 2021?” on Tuesday, October 12, 2021 – 04:00-05:00 pm PST or 01:00-02:00 am CET.

Speaker is Laurence Klotz who has a long-standing interest in the conservative management of prostate cancer and is the principal investigator on a number of clinical trials evaluating the role of various interventions and imaging studies in men on active surveillance. He was in the forefront of key opinion leaders looking into Active Surveillance long before it was as widely accepted for early prostate cancer as it is now.

Register here.

Rehabilitation Atlas

The Patient Support Working Group of the Association of European Cancer Leagues (ECL), has launched the 2nd edition of the ECL Rehabilitation Atlas.

This is an inventory of 61 different rehabilitation programmes, ordered by category of activity. It intends to provide basic information about recent programmes and activities supporting the physical and psycho-social rehabilitation of patients and caregivers, which may inspire other cancer leagues, healthcare professionals and stakeholders.

Patient Engagement Open Forum 2021

The Patient Engagement Open Forum 2021 is going virtual again on October 6 and 7. Registrations are still open.

Through a series of virtual events planned around the year, the EPF will work in a multi-stakeholder environment to advance their efforts towards stronger patient engagement. Co-organized by PFMDEUPATI and European Patients’ Forum (EPF), we are looking forward to your participation and active contribution to advancing the patient engagement impact.

Agenda:

October 6, 2021: Day 1
14:30-16:00 (CET) insert precision medicine tentative title
16:30-18:00 (CET) Electronic medicine leaflets – What do patients want?

October 7, 2021: Day 2
14:30-16:00 (CET) From Vision to Reality: Patient Engagement in the Medtech Sector
16:30-18:00 (CET) Remuneration for patient community interactions with the pharmaceutical industry at Fair Market Value: Harmonizing global Principles and developing a global methodology

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