Cancer Quality of Life Survey

Information for Patients

Receiving a survey and opting out

Your records show you were diagnosed with cancer around 18 months ago. Information about your cancer is held by the cancer register in England. We have sent you this survey because we would like to understand how cancer may have changed your quality of life. This will help us improve the way we support people who have had a cancer diagnosis. You can find out more information about the cancer register here: https://www.gov.uk/government/publications/cancer-registration-patient-information-leaflet

  • The survey is carried out within strict procedures to ensure compliance with the Data Protection Act 2018

  • The survey is being carried out under NHS Digital’s permissions to use patient data to improve population health

  • This survey is being carried out for NHS England and NHS Improvement and NHS Digital by a company called ‘Quality Health’. Your personal information will be kept safe by them, and your answers will be dealt with in confidence.

  • Your answers will be shared with and securely held within NHS Digital; no personal or identifiable data will be published.

The NHS wants to understand about the longer-term impact that cancer can have on people. We want to support people to have a good quality of life. It would be great if you could fill in the survey whether you feel in good health or not. This will help us build up a full picture of all the different ways people are experiencing life after a cancer diagnosis.

The NHS have chosen to send out the survey to people around 18 months after they were told they had cancer. There are two reasons for this: firstly, this time is required for NHS Digital to collect and link together all the information about each person’s cancer diagnosis; and, secondly, if the survey were done sooner, the longer-term effects of cancer may be hidden by the shorter-term impact of the different treatments people have had. The NHS understands that cancer treatment can have an effect many years after this but have chosen to start by looking at this point.

We are sorry you do not want to take part in this survey. You do not have to complete the survey. Your medical care will continue in the same way whether you choose to take part or not.

If you want to make sure that you are not contacted again about this survey, please contact the free helpline on 0800 783 1775, or send an email to helpline@quality-health.co.uk. Alternatively, you can write to FREEPOST Quality Health. If you can, please include the patient reference number at the top of your letter. This number starts with the letter P and is followed by 8 numbers e.g. P12345678

We apologise if you think you should not have been sent this survey. We are sorry if being sent this survey has caused you any upset or distress. If you have any questions or concerns, or wish to make a complaint about the survey, please contact the helpline on 0800 783 1775, or send an email to helpline@quality-health.co.uk. Alternatively, you can write to FREEPOST Quality Health (you do not need a stamp).

We will try to work out why you have been sent the survey and let you know what happened as soon as possible. We will also try to make sure that you are not sent any further survey reminders. If a reminder has already been sent out, please ignore it when it arrives.

Since December 2020 the survey is being sent to people who have had a diagnosis of breast, prostate or colorectal (bowel) cancer about 18 months after their diagnosis was made. From July 2021 we introduced sending the survey out to a small sample of patients from each of the other included cancers, with the aim to include all people with cancer in the Autumn.

If you were diagnosed with breast, prostate or colorectal (bowel) cancer around 18 months ago and have not received a survey, please call the free helpline on 0800 783 1775; or send an email to helpline@quality-health.co.uk. Alternatively, you can write to FREEPOST Quality Health (you do not need a stamp).

We will investigate why you have not received a survey and let you know what has happened.

Completing / filling in the survey

No. Your answers can be about all the things affecting your life - which could be your cancer, other illnesses, and other things happening in your life. This will help us build up a full picture of all the different ways people are experiencing life after a cancer diagnosis.

Please answer as many of the questions as you can. The more questions you answer, the more you will help the NHS to understand what life is like for people living with and beyond cancer so that improvements to services can be made in the future.

If you feel unable to answer any question, or if any question makes you feel uncomfortable, you can leave them blank.

We want to understand about the longer-term effects that cancer may have on people. It would be great if you could fill in the survey whether you feel healthy or not. This will help us build up a full picture of all the different ways people are experiencing life after a cancer diagnosis.

Yes, it would be great if you could still fill in this survey. Your answers could be because of your cancer diagnosis and treatment, other illnesses, or other things happening in your life. This will help us build up a full picture of all the different ways people are experiencing life after a cancer diagnosis.

Yes. You can talk about this survey with other people, and ask for help to understand the questions, but it is best if your final answers then only contain your own views.

Yes, you can ask someone to help you fill in the survey. You can let us know who helped you on the survey form itself. Please remember to always answer from your own point of view, rather than take the opinion from the person that helps you.

You can request a large print copy of the survey or you can complete the survey over the phone (including in another language) via the free helpline. Please contact us by calling 0800 783 1775. Alternatively, you can send an email to helpline@quality-health.co.uk or you can write to FREEPOST Quality Health (you do not need a stamp).

If you feel unable to answer any question, or if any question makes you feel too uncomfortable, you can leave them blank.

Each survey has a unique survey number so that your name and address does not appear on the survey. This means that everyone’s answers can be carefully recorded without error, but also keeps your answers to the survey confidential.

Yes. A paper survey will be sent out to you approximately 2 weeks after you received the initial invitation. Alternatively, you can request a large print copy of the survey. This will be sent to you in the post within 2-3 days for you to fill in and return in a FREEPOST envelope.

If you would like help to complete the survey over the phone, including in other languages or would like to request a large print copy, please contact us by calling the free helpline on 0800 783 1775, or send an email to helpline@quality-health.co.uk. Alternatively, you can write to FREEPOST Quality Health (you do not need a stamp).

Survey design

The survey includes questions from two well-known and well-tested quality of life questionnaires called EQ-5D and EORTC QLQ-C30.

The ‘EQ-5D’ questions are used widely across the health service and in medical research. They allow comparisons to be made with people treated for other health conditions or with the general population.

The ‘EORTC’ questions are about cancer in general. These will allow us to look at differences in quality of life across different cancer types.

The steering group who oversee the survey thought about adding in extra questions that were relevant to each type of cancer or treatment. They have chosen not to include these for now. They want to keep the survey short and as easy as possible to complete. The steering group will keep the content of the survey under review and consider adding in extra questions later.

If the NHS finds that there are cancer types that have especially poor quality of life outcomes compared to others, they will then seek to understand this in more detail. The NHS will act to improve care for these patients where possible.

The questions look at quality of life outcomes and do not look at the experience of receiving cancer care. We want to understand about the longer-term effects that cancer may have on people. This will help us to improve the way we support people to live as long and as well as possible.

You may receive more than one of the questionnaires below in Figure 1. We encourage you to complete all of them if possible, as your answers will be useful in different ways to you, to other patients and to the NHS.

Figure 1 - Differences between questionnaires that cancer patients may receive in England 2020

Differences between questionnaires that cancer patients may receive in England 2020

Survey results

NHS Digital will join up the answers from the survey with information that is already recorded about your cancer and its treatment. It will help the NHS to work out where care may not be working well, and if any improvements should be made.

You are also able to see a summary of your answers to the survey with a comparison to the general population. If you are completing the survey online, you will have the option to download or print your summary of the results once the survey has been completed. If you are completing the survey on paper, you can request a PDF of your summary by email or request a paper copy of the summary results to be sent to you by post.

No, you will not be told about the results of the survey. However, the results will be available from 2021 and will be published on a website called ‘Cancer Data’ (https://www.cancerdata.nhs.uk/). This is open to everyone and you can explore the results through this website.

You are also able to see a summary of your answers to the survey with a comparison to the general population. If you are completing the survey online, you will have the option to download or print your summary of the results once the survey has been completed. If you are completing the survey on paper, you can request a PDF of your summary by email or request a paper copy of the summary results to be sent to you by post.

Yes. If you are completing the survey online, you will have the option to download or print your summary of the results once the survey has been completed. If you are completing the survey on paper, you can request a PDF of your summary by email or request a paper copy of the summary results to be sent to you by post.

The survey will close six months after the survey invitation is sent out to you. Survey responses will not be included after this point and the online login details will stop working.

Further support

If you are experiencing any problems or concerns with your health or wellbeing you should contact a healthcare professional. This could be your GP, nurse or cancer support worker. They can support you to get the help that you need.

You can also find links to other sources of support on the Help and Support page.