Around 1 in 5 people diagnosed with cancer in the UK take part in a clinical trial.
A study looking at factors affecting where people with blood cancers are cared for at the end of life
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
Being able to choose where you are cared for and die is a sign of quality end of life care. Most people would prefer to be cared for and die at home. Studies show that people with blood cancers are more likely to die in hospital than people with other cancers. The researchers want to find out why.
The researchers want to gather information from people with blood cancers, their relatives and carers, and their doctors and nurses. They hope that this information can help to change things so that people with blood cancers are able to be cared for and die in the place they prefer.
Please note you may not benefit from taking part in this study but the information could help people in the future.
Who can enter
You may be able to enter this study if you live in the Yorkshire and Humberside region and you have one of the following
- Acute myeloid leukaemia (AML)
- Acute lymphoblastic leukaemia (ALL)
- Chronic myeloid leukaemia (CML)
- Chronic lymphocytic leukaemia (CLL)
- Hairy cell leukaemia
- Non Hodgkin lymphoma (NHL)
- Hodgkin lymphoma
- Your disease has come back (relapsed)
- You have had all possible treatments for your disease
- You are
The researchers want to interview 15 patients and 15 relatives or carers. The interview will take about an hour. They will ask about
- Where you would prefer to be cared for at the end of life
- Your reasons for this
- If your preference has changed over time
- If you have had opportunities to talk about this with your doctor, nurse, relatives and carers
You can have a relative or carer present during the interview. They are welcome to take part. With your permission the interview will be tape recorded and written down at a later date. This is so the researchers can analyse what you have said and compare it with what others have said. The researchers will keep what you say anonymous, so no one will be able to link it to you.
The researchers will also interview 60 health professionals. They will ask them about
- Why they think most people with blood cancers die in hospital
- Where they think people at the end of life should be cared for
- What factors they think are used to decide where people at the end of life are cared for
- What changes they think could be made so people at the end of life can be cared for in their preferred place
The interview can take place in your home, your local hospital or any other place you feel comfortable.
The team doesn’t expect that there will be any risks to you in taking part. But sometimes, talking about illness and feelings can be upsetting. They will give you the name of a nurse you can contact if you wish to talk further about any issues that arise during the interview.
How to join a clinical trial
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
Dr Debra Howell
Marie Curie Cancer Care
NIHR Clinical Research Network: Cancer
University of York
Yorkshire and Humberside Haematology Network