Europa Uomo invites men with prostate cancer around Europe to take part in what its Board describes as “probably the most important initiative ever launched by the organisation”. The Europa Uomo quality of life survey, launched today, will gather information about the effects experience of prostate cancer and help to fill a significant research gap.
“The quality of life (QoL) of men with prostate cancer has been a big issue with prostate cancer organisations for some time” said Europa Uomo Chair André Deschamps. “This survey is a major step in giving greater prominence to QoL issues for men and their families dealing with the effects of prostate cancer.”
“The success of this on-line survey, however, depends on a strong response rate to the survey by its member organisations in 27 countries.”
The survey asks questions about the impact of prostate cancer and its treatments on daily life. It may be completed by men (or their partners on their behalf) without their having to be members of a national prostate cancer organisation. However, Europe Uomo is depending on its member organisations to circulate the questionnaire widely. A minimum of 1,000 responses is required to have sufficient material to draw meaningful conclusions. These responses need to be drawn from a wide range of respondents from across Europe.
The survey is online only. Anyone without an email account or a computer/tablet/smart phone can use a friend’s device or a public library or other location to complete the survey.
Click here for more information about the survey Click here to complete the survey
New research provides further support for European moves to ensure that prostate biopsies are guided by MRI scans rather than standard ultrasound. It finds that the use of pre-biopsy MRI combined with targeted prostate biopsy is better than a biopsy alone in detecting prostate cancers that are likely to need treatment.
The research was published in JAMA Network Open, led by the National Institute for Health Research (NIHR) and the Universities of Bristol, Ottawa, Exeter and Oxford. The systematic review combined the results from seven studies covering 2,582 patients, focusing on men who had not had a prostate biopsy before.
How do you raise funds for your group? Europa Uomo member organisations around Europe need to raise money to fund their activities and support men with prostate cancer. But there’s no single formula for success.
This year Europa Uomo’s member organisation in the UK, Tackle Prostate Cancer, launched an ambitious new fundraising campaign encouraging members to raise money through charity cycle rides. In Ireland, Men Against Cancer organises an annual 5km walk along the seafront in Dublin Bay and asks for sponsorship and support. In Sweden, Prostatacancerfobundet raises funds by selling blue moustache badges in November.
Europa Uomo resumed its programme of auditing prostate cancer units (PCUs) with a visit last week to the Franciscus Gasthuis hospital, one of a network of seven Dutch PCUs in the south-western Netherlands.
This is part of the Prostate Cancer Units Network project – an initiative started by the European School of Oncology (ESO) in partnership with Europa Uomo. It has created the first international network of clinical units dedicated to the diagnosis and treatment of prostate cancer, and aims to promote the multidisciplinary management of prostate cancer patients.
The last year has passed incredibly quickly. It is already a year since I was elected as chairman of Europa Uomo during the General Assembly in Dublin.
Together with the Board and our members, we have worked hard to grow further the organisation and fulfil our mission of being the voice of men with prostate cancer in Europe.
We have increased our communication efforts through our newsletter and our website. It is possible to read our website in many languages and our newsletter attracts more and more readers. But there is still a lot of work to do.
Europa Uomo put its weight behind the cause of a Europe-wide population-based structured screening programme for prostate cancer at its General Assembly in Birmingham last weekend. Representatives of its member organisations voted in favour of the policy, which will be reflected in campaigning over the coming years.
Chairman André Deschamps reviewed the organisation’s progress over the past year and its growth in membership. Around 50 representatives from Europa Uomo’s 27 member organisations attended the event, with four organisations admitted as new members: prostate cancer patient organisations from Bulgaria, Iceland, Armenia and Latvia.
A simple MRI scan is about to be trialled in the UK as a new means of screening men for prostate cancer. Researchers at University College London Hospital will invite 1,000 men aged 55 to 75 for scans through two London GP surgeries.
They are investigating whether quick scans, which will cost around £150 and take ten minutes, are more reliable at identifying dangerous cancers than PSA blood tests. Professor Mark Emberton, who is leading the research has said he hopes they will revolutionise the way we diagnose prostate cancer, and identify those men who need treatment most.
The European Medicines Agency (EMA) – which is responsible for the evaluation and regulation of medicines in Europe – has confirmed to Europa Uomo that its application to remain a member of the EMA Patients’ and Consumers’ Working Party has been successful.
The Patients and Consumers Working Party allows patient representatives to raise and discuss issues relating to drug availability and use with Europe’s drug regulators. The working party includes a core group of patient and consumer representatives from over 20 organisations, and representatives from the EMA’s scientific committees.
André Deschamps is the Europa Uomo delegate with Will Jansen as the Alternate.
Europa Uomo is set to launch a major study examining quality of life in men with prostate cancer. It will be asking for the help of its member organisations and their members in completing a questionnaire examining the experiences of men currently receiving treatment, or who have previously received treatment.
“This is a very significant project,” said Europa Uomo Chair André Deschamps. “Authoritative evidence about the effects of prostate cancer and its treatments on day-to-day living is very thin on the ground. We want to change that.”
The confidential web-based survey, due to be launched in June, will ask men about the impact of prostate cancer on their mental health, mobility, self-care and usual activities. It will also ask about the extent of treatment side effects and the obstacles they present to daily life. The questions are based on validated quality of life questionnaires used by clinicians and researchers across Europe.
Support groups for men with prostate cancer in Bulgaria, Iceland, Armenia and Latvia will be put forward for Europa Uomo membership at the forthcoming General Assembly in June. The Europa Uomo Board considered the organisations’ applications at its recent meeting – the first in its new offices in Antwerp.
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