INDIGO COMMUNITY
Can you help make care after cancer better? What do people need so that they can live the fullest life possible?
Please help us to discover more about the quality of life and care and support that people like yourself need in the years after their cancer treatment. By taking part in this research, you can help to change the treatments and services patients receive in the future.
Why is this research needed?
This research is needed so that better longer-term care and support can be provided for those of us treated for cancer. Very little is known about how cancer and its treatments affect the lives of patients, particularly in the long term. To find out, it is vital that we can hear everyone's views when new treatments or services are being planned. To do that, it is important to learn the best way to contact patients after they have been discharged from hospital following a diagnosis or treatment for any type of cancer. This research will help develop methods to reach everyone who has been treated for cancer so together we can make care and support better.
How can you help?
We have created a questionnaire for patients to complete. This will improve the understanding of the lives of people who have had cancer including those who have or haven’t received treatment. This will make it possible to organise services to provide the care and support that patients want; not what healthcare teams think they need. Please complete the questionnaire which follows this information sheet. The questionnaire asks questions about you, your cancer and treatment. It also asks about your health now and any care and support that you use.
Who can help?
Anyone who has been diagnosed and received (or did not want) any treatment for cancer who was over 16 years old when they were diagnosed. We want to hear from patients from any background, who have had any type of cancer and any type of treatment. They should have finished the treatment plan agreed when first diagnosed with cancer. If they have had any second treatment, receive long-term treatment or are not on any treatment plan now, please take part.
What do I have to do?
We invite you to help us and complete the questionnaire, which contains a series of questions. Some are tick boxes, others ask you to type a short answer. We hope you will answer all the questions but you will be able to miss questions out if you don’t want to answer them for any reason. The questionnaire will take you approximately 30 minutes to complete. We realise this is a long time but you do not have to complete it all in one go. By taking part you will be helping us to design better questionnaires in the future making them more relevant, shorter and quicker to complete. Most importantly, we hope to make questionnaires that provide a better understanding of patients lives following a cancer diagnosis and treatment so that better care and support is provided. You can complete the survey on a smartphone, tablet or computer and have someone help you to complete it if that makes it easier for you. Each answer provided is automatically saved so there is no need to save your answers. You can change your answers if you need to.
Can anyone help me complete the questionnaire?
Yes. You can have someone help you enter the answers or help you to remember what happened to you. Please remember that this questionnaire is about how you feel and what you can and cannot do, not what someone else thinks.
Are my answers confidential?
Yes, your answers are confidential. There are questions about this in the questionnaire so you are in charge of what happens and who sees your answers.
Will you know who I am? Will my answers be anonymous?
You are in charge of how much you tell us about yourself. You can take part in this research without us knowing who you are, and we will not be able to identify you. If we ask questions that would allow us to identify you we will tell you so you can decide if you want to answer or not.
Will it affect my care?
This research will not make any changes to any treatment you are having.
Is everyone asked the same questions?
Most of the questions in the survey are the same for all people but there are two things that might be different.
You will be shown two questionnaires within the survey. All participants will be shown one questionnaire which is very commonly used in this type of research (called the EQ-5D-5L).
There are 3 other questionnaires which we want to test to find out which patients think is most helpful. It would take a lot of time if everyone was asked to complete all 3 of these questionnaires. To save time for participants a better way test this is to only show people 1 of the 3 questionnaires. The fairest way to decide which questionnaire people are shown is to use something called "randomisation". A computer which does not have any information about you will decide which of the 3 surveys you will see to make sure equal numbers of people use each one so we can test them fairly.
There is one other part of the survey which can be different so that not everyone completes the same survey. There is one question which will be shown to everyone but when you are shown the question will be different. It will be shown to half of participants near the start of the questionnaire and to the other half near the end of the questionnaire. We are doing this to see when people are shown this question affects how they answer it. Whether you see the question at near the start, or the end is decided by random using a computer which has no information about you. The only thing the computer does is to make sure that we have equal numbers of people seeing the question near the beginning or the end.
How will I benefit?
In the future we hope the results of this research will be used to improve the services patients receive. It may help doctors to understand which treatments have the best long-term outcomes for patients based on what is most important to that patient. If you agree to being contacted to hear the results of the research there may be things you learn from others' experiences which help you live the fullest life possible after your treatment for cancer.
Do I have to answer every question?
No. It helps more if you answer every question, but even if you leave questions out that helps to create better questionnaires in the future because we then know what questions patients prefer not to answer.
Do I have to complete the whole questionnaire in one go?
No. You can leave the questionnaire and return later using the same link and device. You will be able to complete your answers for up to 48 hours after you start it. If you don't return to finish the questionnaire, we will use the answers you have already given. However, your answers will make more of a difference to future patients if you can complete the whole questionnaire.
How accurate do my answers need to be?
The research asks you some questions about your cancer and its treatment. You do not need to be able to give us perfect answers. For example we ask a question about your date of diagnosis - give the answer as best as you can remember. Please do not feel that you have to go through letters or calendars to give us exact details. When we ask questions about how you feel and how your life is today these questions are best answered without thinking about it too much. Your gut instinct or your first thought is often the best answer.
What if the questionnaire makes me upset or triggers unhappy thoughts?
Usually, people who answer questions like these after being treated for cancer are not upset by the questions or by giving answers. However, some people may be affected. If that happens to you then talking to friends or family may be a good place to start. Or if you would prefer you can use the free Tenovus Cancer Care Support Line (0808 808 1010), which is available 7 days a week to support you with questions or concerns about your cancer diagnosis, treatment or side-effects. Tenovus Cancer Care are not involved in this research so you can be open and honest with them. What you discuss with them is completely confidential. They will not tell us or your doctors what you say to them. Tenovus Cancer Care will not be able to help you with completing the survey or with any problems with digital devices or computers that you are using to complete the survey.
What do I do next?
If you want to take part, please click on the box below to agree to help us. You will then be able to either complete the questionnaire now or be emailed a link so that you can do it later when convenient for you. If you feel that you would prefer not to take part, thank you for reading this. Please come back if you change your mind and tell anyone you know who is living with or beyond cancer about the research.