First findings from Europa Uomo’s breakthrough quality of life study

Early findings from the first prostate cancer quality of life study conducted by patients themselves show that significant numbers of men treated for the disease are struggling with mental health, sexual and tiredness problems after treatment.

The Europa Uomo Patient Reported Outcomes Study (EUPROMS) is using data from 2,943 questionnaire responses from men who have had prostate cancer from 24 European countries. The preliminary findings have been announced by Europa Uomo Chairman André Deschamps at the European Association of Urology’s oncology meeting in Dublin (pictured). 

Europa Uomo Chairman André Deschamps presents the results in Dublin

Around 45% of men reported experiencing anxiety or depression after treatment. And an analysis of survey responses using the EPIC-CP quality of life instrument indicated that lack of sexual function is having the highest impact on quality of life, with a quality of life score significantly lower that recorded in previous clinical studies. Use of, and satisfaction with, medication and devices to help erections is very low.

The survey returns also reveal that patients who have received two or more treatments have significantly lower quality of life scores.

“Our questionnaire yielded an impressive number of responses, representing a good cross-section of men of different ages and different stages of treatment,” said André Deschamps. “We have a good picture of prostate cancer survivors across Europe.”

“We conducted the study because we wanted to give patients an idea of what to expect after treatment. We also wanted to investigate the impact of diagnosis on quality of life and to raise awareness of quality of life – not just survival – as an important issue in prostate cancer.”

The announcement of these early findings precedes a full analysis of results, led by Professor Monique Roobol of the Erasmus University Medical Centre, Department of Urology, Rotterdam. A detailed analysis is expected to be presented in March at the European Association of Urology’s conference in Amsterdam.

Lives must be saved through PSA testing programmes

The lack of a screening programme for the early detection of prostate cancer represents an inequality – and structured and organised PSA screening programmes should begin in all European countries.

This is a main message of a major new Europa Uomo statement, which points to the fact that prostate cancer kills more men than breast cancer kills women, and evidence that at least 20,000 men’s lives could be saved by structured PSA-based screening.

Prostate cancer changes life in ‘unimaginable ways’

Men with prostate cancer told their stories at the launch of a new campaign to improve the care for people affected by prostate cancer across Europe.

The new Let’s Talk Prostate Cancer initiative, backed by the European Association of Urology (EAU), is bringing together an multi-stakeholder expert group across the EU to develop recommendations for the EU.

Robert Greene from the European Cancer Patient Coalition (ECPC) spoke of how his life had changed in “unimaginable ways” since being diagnosed with prostate cancer. Even though his prostate cancer was caught at an early stage, and the condition is currently manageable, Greene said he finds life full of “what ifs”.

Quality of life survey a huge success

Europa Uomo has now closed its quality of life survey, after an overwhelming response from 24 European countries. Around 3,000 of prostate cancer patients completed our questionnaire, which explored experiences of treatment and life afterwards.

The number of respondents is three times Europa Uomo’s original target for a minimum response. This means that the findings, when published, will hold even greater weight – highlighting the factors that matter most to men and how their lives might be improved.

Movember: the moustache battle begins

Prostate cancer patient groups around Europe are marking Movember with activities bringing awareness, raising money and urging action.

In Sweden, Europa Uomo’s member organisation Prostatacancerförbundet is running its annual “Mustaschkampen” (moustache fight) campaign, collaborating with 27 local associations and 500 companies and organisations. For those who do not grow a mustache themselves to mark the day, there are fake moustaches for sale – this year modelled, in striking publicity, by women boxers.

One of the images of moustached women boxers in the Mustaschkampen campaign

More than 400 activities are planned in Sweden throughout the month, including radio chats, memorial events for the deceased and publication of a celebrity recipe book. The target this year is to exceed the €1.2 million raised last year.

Providing the patient perspective on medicines

André Deschamps, Europa Uomo Chairman, represented the organisation and men with prostate cancer at the European Medicines Agency’s patient consultative group in September.

The EMA Patients and Consumers Working Party (PCWP), which includes 22 European organisations representing patients, is a platform for discussion between medicines regulators and organisations on issues relating to medicines. It provides recommendations to EMA.

Among the items discussed at the meeting were monitoring medicines safety, the relationship between digital media and health, and access to medicines.

Important findings expected on impact of prostate cancer

Europa Uomo’s ground-breaking quality of life survey has gained significant interest from clinicians, patient groups, organisations and companies. In a series of meetings at the ESMO (European Society for Medical Oncology) Congress – one of the biggest events in the cancer calendar – a Europa Uomo delegation spread the word about the survey and its importance.

Europa Uomo Board members pictured at the ESMO Congress (left to right): André Deschamps, John Dowling and Ioannis Vanezos

“We made pitch after pitch, and the response was very good,” says John Dowling, who attended with fellow Europa Uomo Board members André Deschamps and Ioannis Vanezos.

“We’ve had a fantastic response to our survey – and have already exceeded the minimum threshold of responses required. We’re expecting the results will have something very important to say about the quality of life of men with prostate cancer – something meaningfully different than previous clinician-led surveys.”

“What makes this survey special is that it is patient-mediated. People are very interested in that.”

The latest figures show that 1,861 men have so far responded, providing anonymous insights into the impact of prostate cancer and its treatments on daily life. The survey is due to continue into November, when the results will be compiled and prepared for publication. Preliminary findings are expected to be ready later this year, with full results announced at a meeting next year.

There’s still plenty of time to complete and further publicise the survey: the more respondents, the more authoritative the findings will be. Find out more information about the survey, or go direct to the survey.

Patient advocates share their skills and knowledge

A hundred leading cancer patient advocates from 26 European countries spent four days in Frankfurt, Germany at the first training courses to be developed and run by advocates themselves.

The event was organised by WECAN (wecanadvocate.eu), an informal network of leaders of cancer patient umbrella organisations active in Europe. Europa Uomo was among the patient advocate organisations represented.

The representatives from Europa Uomo and organizers of WECAN Academy 2019. From left to right: Ananda Plate, Izabella Pawlowska, Dag Utnes, Bernd Troche, Michaela Geissler and Thrainn Thorvaldsson.

Out of 87 participants, only 13 said they had attended cancer advocacy training before. Some sessions provided practical guidance on how to run a non-profit organisation, how to gather evidence and how to get your voice heard. Others provided primers on areas such as healthcare systems, access to new treatments, drug development, clinical trials and how patient advocates can influence the research agenda.

Quality of life: tell people about our survey

Have you completed the Europa Uomo quality of life survey yet? Have you shared it with your networks? Have you sent it to anyone you know who has had a PCa diagnosis?

Now is the time. Just click on this link, or copy and paste it to your contacts.
https://www.qualityoflifesurvey.co/wix/p1874284546.aspx

The survey was launched on 21st August, and according to Europa Uomo Chair Andre Deschamps the early response to the survey from member organisations has been strong.

“The thanks of the Board must go the officers and members of all national and regional prostate cancer support organisations for their contribution to making this survey a great success,” he said, adding that more responses were now needed from the wider community of men with prostate cancer.

Quality of life survey: your questions answered

Europa Uomo is inviting men with prostate cancer around Europe to take part in its quality of life (QoL) survey, which will gather information about the effects experience of prostate cancer and help to fill a significant research gap.

You can access and complete the survey here.

Below is further information about the survey. If you have any other questions, please contact: europauomo@skynet.be

Will the information in the survey be safe and secure?
Absolutely. Individual’s data collected cannot be seen by anybody connected with Europa Uomo. The data will be processed by an independent third party, Cellohealth, a UK-based expert in surveys of this kind. The data will be anonymised and aggregated to ensure confidentiality. Once the material from patients is collected by Cellohealth, links to the individuals who completed the survey are deleted.

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