"I was delighted to take part in a clinical trial as it has the potential to really help others in the future.”
A trial looking at a new way to help people with cancer plan their care now and in the future (ACTION)
Coronavirus and cancer
We know it’s a worrying time for people with cancer, we have information to help. If you have symptoms of cancer contact your doctor.
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
People with cancer may experience a variety of symptoms which can have an impact on their quality of life. A person’s quality of life may improve if they feel they can discuss their care and wishes with the health professionals looking after them. But unfortunately this does not always happen.
More about this trial
One way of trying to improve communication between healthcare staff and patients is through advance care planning. This is a formal process where people are encouraged to say what they want their care to involve, for example which treatments they may or may not want. Or where they want to be looked after. The patient’s doctor or nurse normally writes this down so that other health care professionals can refer to it when they need to.
One type of advance care planning is the Respecting Choices Programme. This is already in use in some healthcare settings in America and Australia.
The Respecting Choices Programme involves a trained person (a facilitator) asking the patient about their goals and beliefs and what they want out of their care. People are also invited to choose a friend or relative who doctors and nurses should consult if the patient is no longer able to make decisions for themselves.
Researchers would like to see whether the Respecting Choices Programme can be used in this country. They also want to find out if it can improve a person’s symptoms and quality of life.
Who can enter
You may be able to join this trial if you have one of the following
- Have lung cancer that is stage 3 or 4
- Have bowel cancer (colorectal cancer) that has spread elsewhere in the body (stage 4 bowel cancer)
As well as the above you should be well enough to be up and about for at least some of each day, even if you need help looking after yourself (performance status 0, 1, 2 or 3)
You cannot join this trial if any of these apply. You
- Are taking part in another study or trial looking at palliative care or communication in cancer care
- Are unable to fill in a questionnaire in English
This is a phase 3 trial recruiting people across different countries in Europe. In the UK the researchers need 272 people to join from 4 different hospitals. If you are a patient at one of the hospitals, you will be invited to take part by your consultant, specialist nurse or research nurse.
The people taking part are in different groups depending on which hospital they are a patient at.
- People in 2 of the 4 hospitals will take part in the Respecting Choices Programme
- People in the 2 other hospitals will have care as normal. This is the
If you are part of the Respecting Choices Programme you have 1 or 2 conversations with a trained member of the trial team called a facilitator. The first meeting will take place within 3 weeks after you join and you may be asked to meet them again a few weeks later. Each meeting takes about an hour.
During these meetings the facilitator will explain what advance care planning is. You will have the opportunity to choose someone who you would like to be consulted about your care and treatment if you become unable to make decisions for yourself. You will be asked about your wishes and preferences for future care.
You can talk to your GP, consultant and any other health professionals about issues raised as part of your advance care plan. If you want to, you can complete a written advance care plan called a My Preferences form. This can be changed and updated by you at any point. The My Preferences form can then be used by health professionals to help them care for you and make decisions about your care.
The trial team may ask your permission to record your conversations. One reason for this is so that the researchers can check that the Respecting Choices Programme is carried out in the same way across all the hospitals.
Another reason is that the trial team would like to study the communication further and it may be looked at again as part of future research. This part of the trial is optional. You don’t have to agree to conversation recording if you don’t want to, you can still take part in the trial.
Following this meeting you will be given a contact number for the research team in case you think of any questions.
If you are part of the group receiving routine care you are supported by your consultant, GP and other health professionals.
Everyone taking part fills in a questionnaire on 3 different occasions. These are at the start of the study, then about 10 to 12 weeks and 18 to 20 weeks later. This questionnaire will ask you about your health, how you are coping with your cancer and how involved you feel in decisions about your care and treatment. It will take about 30 to 40 minutes to complete. You complete this at home any time that suits you.
The trial team will ask everyone taking part if they can look at your hospital medical notes. The reason for this is to find out if your wishes and preferences have been taken into account by your health care team. You don’t have to agree to this if you don’t want to.
If you are part of the Respecting Choices Programme, your meetings with the facilitator will take place at a time and place convenient to you. You do not have any extra hospital visits as part of this trial, unless you choose to talk to the facilitator at your local hospital.
If you are having routine care you do not have any extra hospital visits as part of this trial.
If you are part of Respecting Choices Programme, you may find it upsetting to talk about your cancer, how it has affected you and about the future. The facilitator will offer you a break if you need it and can provide information about any support services if you think this will be helpful.
Completing the questionnaires may raise certain issues that your find upsetting. As above, the trial team can provide you with information about support services.
Previous research suggests that although studies like this can be upsetting for those taking part, it can also be a positive experience.
How to join a clinical trial
Professor Sheila Payne
NIHR Clinical Research Network: Cancer