This post is also available in: Cymraeg (Welsh)
With the support of Prostate Cancer UK and the Movember Foundation, ‘Life After Prostate Cancer Diagnoses’ is a pioneering research project which aims to discover what life is really like for men with prostate cancer in the UK, and what needs to happen to improve it.
Researchers at the University of Leeds and Queen’s University Belfast, working with colleagues at Southampton University, Oxford Brookes University, and the South West Knowledge and Intelligence Team (PHE) will lead this first ever in-depth, UK-wide study of men diagnosed with prostate cancer. The programme aims to find out what effect prostate cancer has had on men’s physical, emotional and social wellbeing, as well as exploring the impact on their families.
“Healthcare is fundamentally about improving people’s health. And to judge the success of that, you have to ask the public and patients: ‘What is important to you? What’s been particularly good or bad, and how can we improve?’
“It’s not enough just to be alive. We need to know what life is like for men living with prostate cancer and at the moment we do not have a good enough understanding of this”.
Dr Adam Glaser, Co-lead Investigator of the Life After Prostate Cancer Diagnosis Study.
What We Hope to Achieve….
This research aims to find out more about the impact prostate cancer has on everyday life, through a study that will involve the only people who really know – men who have been there. It is the commonest cancer in men in the United Kingdom, and its treatment may impact on the quality of life of men and their partner/spouses in many different ways.
Clinical and scientific progress in managing prostate cancer will only bring benefits in terms of well-being and survival for patients if we develop comprehensive meaningful approaches to measuring the important patient outcomes.
The study will achieve this through a comprehensive programme of patient reported outcomes research (PROMs) over the next three years. Over 100,000 prostate cancer survivors in all four UK countries who were diagnosed within a 24-month timeframe will be invited to complete a postal survey to help us understand their experiences.
By the end of the project, the combined results will lead to a really detailed picture of what life is like for men with prostate cancer across the UK, how this changes over time, what helps them cope with any problems and what gaps there are in support and care services.
“There are likely variances in the standard of support and care available in different areas – internationally, between different UK countries, and even different parts of the same country.
The project, which is funded by the Movember Foundation, will link to similar Movember Foundation funded work in Ireland and Australia so we can compare and learn from how men are doing in different countries, as well as in different parts of the same country”.
Dr Anna Gavin, Co-Lead Investigator of the Life After Prostate Cancer Diagnosis Study
How Will the Project Work?….
A UK wide consortium of researchers, clinical experts and patients has been formed to develop the study, and will survey Prostate Cancer survivors in all four UK countries who were diagnosed within a 24-month timeframe.
Over the next three years surveys will be sent out to over 100,000 men across the UK, and a smaller sample of men and their partners/spouses will be invited to participate in telephone interviews, to develop a more in-depth understanding of the issues that men with prostate cancer and their families face, and how these change over time.
The survey, and the interviews, will be very detailed and will cover all sorts of questions about what life is like after prostate cancer diagnosis and treatment.
Men who fill in this survey and take part in the interviews will obviously be providing a lot of sensitive information, so it’s important to know that all the survey responses will be made completely anonymous and there’ll be no way to identify any individual man from his answers. If you wish to read more then you can download a copy of our Privacy Impact Assessment.
To find out more about the project the full Study Protocol can be downloaded here.