A study looking at a new way of helping people with advanced cancer get the information they need (QPL pilot study)

Please note - this trial is no longer recruiting patients. We hope to add results when they are available.

Cancer type:

All cancer types

Status:

Closed

Phase:

Pilot

This study is looking at a ‘question prompt list’ to help patients and those caring for them to get the information they need from their specialist symptom control (palliative care Open a glossary item ) team.

We know from research that one of the main needs of people with advanced cancer Open a glossary item , and of those caring for them, is to get information that will help them. But unless their doctor guides them, people can find it difficult to think of the best way to ask questions about their condition. Doctors can also feel unsure about what information to give when, to help the family most. So patients and those caring for them may end up not understanding the illness properly, and may become anxious and less able to plan ahead.

We also know from research that people with advanced cancer, and their carers, wish to control the kind and amount of information they are given. But at the moment it is not clear how best to do this, or when, or how to encourage patients and carers to ask questions.

Experts in Australia have designed a ‘question prompt list’ or ‘QPL’ to help meet these needs. It gives patients and carers a list of topics and questions that they may want to raise with their doctor. The QPL also suggests wording to help people create the questions they need to ask.

Phase 1 of this study adapted this list to meet the needs of people in the UK. The aims of phase 2 are to test (pilot) this UK version with a small number of people, and see if the booklet helps patients or carers in the UK. They will also see whether this kind of testing would work with a larger number of people. From what they learn, the study team hope to design a full randomised controlled trial to test the UK QPL properly in the future.

Who can enter

You can enter this study if you are under the symptom control (palliative care Open a glossary item ) inpatient or community team at either King’s College, Guy’s or St Thomas’ Hospitals in London and:

You have any advanced cancer
Your doctor has said that your cancer is getting worse
You can speak and read English well enough to use the QPL, and take part in the research interviews
You are at least 18 years old

Trial design

This part of the study is a pilot of a phase 2 randomised controlled trial, and will recruit 30 people. It will look at how well the UK question prompt list works, and whether they need to change it. It will also see if this way of testing the UK QPL would work with a larger number of people.

Everyone taking part in the study will meet with a trained researcher who works closely with your palliative care team. The researcher will ask you a number of questions by reading out questionnaires. These will ask you about topics including anxiety, your experiences with the palliative care team and how much information you like to have. The meeting should last about an hour.

This part of the study is randomised Open a glossary item . The people taking part are put into one of 2 groups by chance. Neither you nor your specialist will be able to decide which group you are in.

If you are in group 1, you carry on seeing your palliative care team in the same way as if you were not taking part in the study.

If you are in group 2, you carry on seeing your palliative care team, but the researcher will also give you a booklet containing the Question Prompt List. You can keep this booklet to read and use when the team next visit you at home.

Everyone in both groups will have their next palliative care visit audio recorded, if you (and your carer if they are there) agree. This is to help the study team find out what people talk about when they have visits from the palliative care team, either at home or in the hospital. If you are in group 2, you can use your Question Prompt List booklet at this visit.

Everyone will then have 2 more visits from the researcher. They will ask you questions from some of the questionnaires again, although not as many as in the first visit. By seeing you several times, the researcher can try to understand how things may change over time.

If you are in group 2, during your second visit the researcher will ask what you thought of the QPL booklet and, with your permission, audio record your answers.

After you finish the study, you continue to see your palliative care team in the same way as you did before.

Hospital visits

You will meet the researcher at a place convenient for you. This could be at home, or in a quiet room at the hospital. You will see the researcher 3 times, for interviews

At the start of the study
A day after you see the palliative care team at home
A few weeks after this

If you meet the researcher away from home, the study team will pay your travel costs.

Side effects

As there are no treatments in this study, there are no side effects. But you may find talking about your thoughts or experiences upsetting. If this happens you will be able to take a break, or stop the study if you wish. The study team will let your doctors know about how you feel if you are happy for them to do this.