Questions about the survey
The research team carrying out the Life after prostate cancer diagnosis study have written the answers to some questions you may have, If you got a copy of the survey through the post.
If you received the survey, you should also have a copy of the patient information sheet (PDF download).
If your question isn’t answered below, you can call the free, 24-hour Life After Prostate Cancer Diagnosis study helpline on 0808 801 0678. If you have medical questions about anything related to a prostate cancer diagnosis or treatment, you can call our Specialist Nurses on 0800 074 8383, or contact them online by email or live chat.
How did you get my contact details?
This is a large UK-wide study of men who have been diagnosed with prostate cancer, and many hospitals across the UK are taking part. You were sent the information and survey from a hospital that had your details as someone who has had investigations for problems with your prostate gland.
- Your answers will be anonymised. Hospital staff will not be able to identify you from your responses and no personal data will be released to the public.
- We are carrying out this survey within strict guidelines to make sure that we comply with the Data Protection Act 1998.
- We have got Multi Centre Research Ethics Committee (MREC) and Confidentiality Advisory Group approval for the survey and information sheets.
What if I don’t want to take part?
You don’t have to respond to this survey and your care won’t be affected in any way if you choose not to take part.
If you decide not to take part, please return the blank questionnaire using the Freepost envelope provided, so that the research team can make sure you won’t be contacted again. If you do accidentally get any reminders, please just ignore these.
Why wasn’t I sent a survey?
The research team has only sent the survey to men who have been diagnosed with prostate cancer in the last 18 - 42 months, and whose NHS Trust has agreed to take part in the study. If you were diagnosed within the last 18 - 42 months, but didn't get a survey, you may still get one if your Trust signs up at a later date. Surveys will be sent to men in Northern Ireland, Wales and Scotland from next year onwards.
Why did my invitation letter come from a different hospital?
The letter comes from the prostate cancer clinical team leader who discussed your case. They may be based at a different hospital to the one where you were treated/diagnosed, but will have worked with your clinical team.
Why is there a bar code on the questionnaire?
This is a unique reference number for your questionnaire, so that it doesn’t have to have your name and address on. This helps make sure that your answers are carefully and accurately recorded, without losing any confidentiality.
Will I get told about the results?
The research team is planning to publish the results of this study in academic journals and will also share the results with the people who plan and deliver care services.
The research team thinks it’s important that you find out what the results of this study have told us too, so we’ll also be posting updates on the Life After Prostate Cancer Diagnosis website as the work progresses. We will also report the final results here. Please note that research studies take a long time to collect, analyse and publish the data. We expect to announce the results as they become available over the next 3 years.
If you would like to receive an email to tell you when the research team posts results on their website, go to lifeafterprostatecancerdiagnosis.com and click the tab called ‘Publication of Findings’. You can add your contact details where it says “Please tell me when you upload the results”.
I’m not sure about my diagnosis
You may be asking questions like, “I’m not sure I have prostate cancer” or “I was told I am now cancer free” or “I have only just started treatment”
The research team is sorry if receiving the survey has upset you in any way. You have been sent the survey because they understand that you’ve had some investigations and/or treatment related to your prostate. Prostate cancer is diagnosed by a doctor, after you’ve had the results of specific tests back. If you’re unsure about whether you’ve been diagnosed with prostate cancer, you should contact the hospital team you visited, or the GP, who’s been investigating, or managing your care. Please also return the blank questionnaire so that the research team can register your query.
If you were diagnosed with prostate cancer between 18-42 months ago, the research team would still like you to take part, whether you are still having treatment or not.
Why was I not offered a particular treatment?
There are lots of different treatment options for prostate cancer, e.g. active surveillance, radiotherapy and hormone therapy. You should talk about any queries relating to your treatment with your doctor/hospital team, or you can call our confidential Specialist Nurse telephone line (0800 074 8383).
Where can I get a device or help for erectile problems, or information about other medications or treatments?
You should talk about this with your GP or hospital doctor, but you may also find it helpful to call our confidential Specialist Nurse telephone line (0800 074 8383) or look at our information pages to find out more information about treatments and side effects.
Can I complete the survey online or over the phone?
You can complete the survey over the phone by calling the Life After Prostate Cancer Diagnosis Study 24-hour helpline (0808 8010678), but unfortunately, you can not yet fill it in online.
Do I have to answer all the questions?
It’s important for the research team to know as much information as possible, so they hope you’ll answer all the questions even if you don’t have any problems. But if you really don’t want to answer some questions you can leave them blank and move on to the next one.
Can a relative or friend complete the survey for me?
Someone else can fill in the form for you, but you should tell them the answers, so that the answers are still your personal views. Please let the research team know who helped you fill in the survey on the back page.
Can I tell people I know that I am taking part?
Of course you can talk about the survey with other people, but the answers should only reflect your personal views and experiences.