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Life after prostate cancer diagnosis

We've teamed up with the Movember Foundation for pioneering research on health outcomes.

What

What

What is ‘Life after prostate cancer diagnosis’?

This study, funded by the Movember Foundation, aims to find out the impact of prostate cancer on everyday life by asking the only people who really know – men who’ve been there.

You may also hear this type of research called ‘patient reported outcome measures’ or PROMs. In this case, this means finding out directly from men how prostate cancer diagnosis and treatment have affected their physical health, mental and emotional wellbeing and even social activities.

The researchers will do this by sending surveys to men living with prostate cancer, and then interviewing a smaller group of men. Overall, we hope that over 100,000 men will get a survey in the post over the next three years. If you are one of them, please make the time to fill it in. This isn’t just another lifestyle survey. The results will be key to improving the lives of men diagnosed with prostate cancer now and in the future. Join the fight for change and add your voice to the tens of thousands of others who, by responding to their invitation to complete the survey, are making real changes in prostate cancer care possible.

This is a brilliant new opportunity to collect a huge amount of information about the experiences of men who have been diagnosed with, treated for and live with prostate cancer across the UK.

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Why

Why

Why do we need to do this research?

Put simply, we don’t know enough about what men’s life is like after prostate cancer diagnosis and treatment. Do men feel that they have fully recovered after a treatment stops? Do they feel that their overall standard of life is different than it was before? We just don’t know enough to answer these questions for men living in the UK, and we need to know more so we can help to improve their care and support.

In 2012, the English Department of Health carried out a small, pilot study of patient reported outcome measures (PROMs) for a small number of English patients with different tumour types, including prostate cancer. The pilot study showed that while many men live excellent lives after prostate cancer with few problems, some men do have problems and these can have a significant impact on their lives and how they feel.

This early study showed that men’s experiences were often affected by how they felt about, and coped with, the side effects of prostate cancer treatment. It also highlighted the importance of considering not just the after-effects of prostate cancer treatment, but also any other long term conditions a man may have that might impact on his quality of life.

Doing this type of research on a much larger scale will not only tell us what it is that really makes a difference to how a man feels as a result of prostate cancer diagnosis and treatment, but also how his wellbeing compares to men of a similar age who haven’t been diagnosed with prostate cancer. The answers we get from this research will help us persuade health providers to invest in services that men need, and help us understand what puts men at risk of having a bad experience during and after treatment, so we can better advise and support them in future.

What do we want to do with the results of this work?

We expect that when this project finishes in three years’ time, we’ll know far more about what life is like for men with prostate cancer - not only across the UK, but also in different parts of each country - depending on what treatment they’ve received and how long ago they were treated. We’ll be able to understand what men say has most affected their lives after a prostate cancer diagnosis and what needs to happen to improve any unwanted effects.

We want to tell both men and the clinicians treating them about the results of this research. Knowing what other men think has most affected their life after treatment may help men with a prostate cancer diagnosis to choose the treatment that’s right for them, and their doctors to counsel them appropriately.

We also want to use the results we get from this project to influence governments and health providers in all UK nations at all levels - from national decision makers to local hospitals – to make sure they provide the support and care men say is important to them.

These results will also help us develop our own regional and national services to make sure that we’re providing men with the support they need, where they need it.

Who’s doing the research?

We’ve awarded research grant of up to £2.2 million, funded by the Movember Foundation, to Dr Adam Glaser at Leeds University and Dr Anna Gavin at Queen’s University Belfast, who will be working with other researchers at Oxford Brookes University, the University of Southampton and Public Health England on this project.

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How

How

How will the project work?

In the first year, every man who was diagnosed with prostate cancer in England and Wales between one and three years ago will get a survey through the post. The survey is likely to arrive some time in the first half of 2015.

The survey will be very detailed and cover all sorts of questions about what life is like after prostate cancer diagnosis and treatment. The researchers want to find out what factors impact how well men feel after prostate cancer and whether medical, psychological or social support have made a difference to them.

In the following two years, the survey will be sent to men in Scotland and Northern Ireland too. Some men in all four countries will be surveyed again a year or so later to see whether they still feel the same, or if anything has changed.

The researchers will also interview a number of men in each country to give them an in-depth understanding of the issues that men with prostate cancer are facing and how they and their families cope and adapt over time.

By the end of this project, the combined results from all these responses 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.

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.

Please note: the researchers will contact men to invite them to take part in the survey directly. It isn’t possible to request to take part, or to request a copy through us.

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