A study looking at the palliative care for people with lung cancer and other lung conditions (PACE study)

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

Cancer type:

Lung cancer

Status:

Closed

Phase:

Other

This study is looking to understand more about what patients and their carers expect from good quality palliative care Open a glossary item towards the end of life. We know from research over the last 30 years that some people have excellent care in their last years of life, but sadly not everybody does.

Researchers in this study are interested in finding out more about the care, support and information needs of people with lung and breathing problems. They will talk to people with lung cancer, and people with conditions such as chronic bronchitis and emphysema. This group of conditions that cause difficulty breathing is called chronic obstructive pulmonary disease (COPD). By also talking to carers, and health professionals, the researchers hope to understand more about what people expect from good quality care. This study aims to find out more about

The change from having a long term illness to needing palliative and end of life care
The care, support and information people need at this time
Which aspects of care are most important to people at this stage of their illness

The team hope that this information can then be used to improve the support, care and information given to those with lung problems in the future.

Who can enter

This study is for people living in the area of Cambridgeshire, Bedfordshire, Leicestershire County and Rutland, Northamptonshire, Suffolk and Lincolnshire Primary Care Trusts. If it is suitable for you to take part, either your GP or someone involved in the study will contact you. People taking part will be at least 18 years of age and will be either

Diagnosed within the last year or two with lung cancer that cannot be cured

Have lung damage that restricts the amount of air passing in and out of their lungs (chronic obstructive pulmonary disease or COPD)

You cannot enter this study if you

Have a severe learning disability or have difficulty learning, understanding and remembering information (cognitive impairment)
Have a severe mental health condition

The study will also recruit a carer chosen by each patient, and talk to the GP and a nurse involved in each patient’s care.

Trial design

This study will recruit 30 patients. If you agree to take part, the study team will ask you to confirm that a relative or close friend is also willing to take part. If your doctor has not spoken to you already about the study you will be asked if you are happy for your GP to be asked to take part.

The GPs of the lung cancer patients in this study will recruit other patients with COPD into the study. Recruiting will carry on until there are 15 people with lung cancer and 15 people with COPD taking part. Or, when 30 people with lung cancer have been recruited, whichever happens first.

As well as putting forward the name of your GP, the study team will ask you to choose the nurse most closely involved in your care to also take part. You will need to give your GP and chosen nurse permission to talk about your care to the researcher.

Every patient taking part will have one or two interviews. The researcher will either visit you at home or somewhere else convenient for you, and talk to you about what you find helpful, and who provides that help.

This interview will take about an hour. They will then talk to your carer (relative or friend), about the same things, again for about an hour. With your permission, the researcher will audio record the interviews. They will keep all the information confidentially, and the conversation will be made anonymous, so no one will be able to link the information to you.

The researcher may ask if you would be willing to take part in a second interview a few months later. If you have lung cancer this will be about 3 months later. If you have COPD it will be about 6 months later. If you and your carer agree, they will also ask you to keep diaries about your contact with medical services such as your GP or community nurses. And record your thoughts and feelings in the diary between your first and second interviews. You can choose between an electronic or paper diary, and write as little or as much as you like. You do not have to fill out the diary if you don’t want to.

The researcher will phone you twice between the first and the second interview to see how you are getting on.

The researcher will also have a discussion with your GP and nurse. They will ask what they think about issues that come up, and what this may mean for the way they deliver care to patients.

Hospital visits

The researcher will visit you either at home, or somewhere you can get to, for each interview you have. So you will not need to make any hospital visits to take part in this study.

Side effects

The team do not expect that there will be any risks to you in taking part. They hope that talking to the research nurse will be a positive experience. But sometimes, talking about illness and feelings can be upsetting. If the researcher becomes aware of issues that cause you concern during the study, she will suggest you contact your GP, community nurse or hospital specialist, or with your permission she may do so for you.