This post is also available in: Cymraeg (Welsh)
With the support of Prostate Cancer UK and the Movember Foundation, ‘Life After Prostate Cancer Diagnoses’ was a pioneering research project which aimed 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, worked with colleagues at Southampton University, Oxford Brookes University, and the South West Knowledge and Intelligence Team (PHE) to lead this first ever in-depth, UK-wide study of men diagnosed with prostate cancer. The programme aimed 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”.
Professor Adam Glaser, Co-lead Investigator of the Life After Prostate Cancer Diagnosis Study.
What We Hope to Achieve….
This research aimed to find out more about the impact prostate cancer has on everyday life, through a study that involved 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 achieved this through a comprehensive programme of patient reported outcomes research (PROMs) over a three year programme. Over 100,000 prostate cancer survivors in all four UK countries who were diagnosed within a 24-month timeframe were invited to complete a postal survey to help us understand their experiences.
The results of the study 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 was part-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 Did the Project Work?….
A UK wide consortium of researchers, clinical experts and patients was formed to develop the study, to survey Prostate Cancer survivors in all four UK countries who were diagnosed within a 24-month timeframe.
Over a three year period surveys were sent out to over 100,000 men across the UK, with a smaller sample of men and their partners/spouses 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, were very detailed and covered all sorts of questions about what life is like after prostate cancer diagnosis and treatment.
Men who filled in this survey and took part in the interviews obviously provided a lot of sensitive information, so all the survey responses were made completely anonymous with no way of identifying any individual man from his answers.