“I think it’s really important that people keep signing up to these type of trials to push research forward.”
A study to better understand the needs of people with a life threatening illness who are having care to improve quality of life (IARE)
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
This study is finding out more about the needs and experiences of people with cancer or another life threatening illness who are having care to improve their
Researchers in this study want to better understand the needs of people over 65 years (and their families) who have had palliative care so that they can improve services. The study is being carried out in London, Dublin and New York.
In each city the study is split into 3 groups of work. Group 1 aims to find out more about who has palliative care, what their needs are, and what does and doesn’t help with accessing palliative care. Group 2 will talk to patients, carers and health professionals to find out what helps and blocks access to specialist palliative care. And, what helps give patients back some control when they have palliative care. The last group will hear from unpaid carers after their friend or relative has died, to help improve services for patients and support for carers.
The overall aim of this study is to better understand the needs of people and their carers, in order to improve access to palliative care services in the UK, Ireland and the United States.
Who can enter
This study is split into 3 groups. If you are suitable for one of these groups, you will be asked if you would like to take part. Everyone taking part in the UK will already be linked to a palliative care service at King’s College Hospital, London or Guy’s and St Thomas’ Hospitals in London.
If you are in group 1, you
- Have been referred to palliative care at some point
- Have had at least one 24 hour admission to hospital
- Are able to share your views in a survey that lasts about an hour
- Are at least 65 years old
- Are English speaking
In group 2 you must be in one of the following situations
- Have taken part in group 1
- Be caring for someone in the above situation, are not being paid to do this and are at least 18 years old
The team will also recruit health professionals who are looking after palliative care patients. Half will be palliative care specialists and half will not.
You may be asked to join group 3 if
- You were the unpaid main carer of someone who was referred to palliative care
- This person has since died
- You are at least 18 years old
In total this study will recruit 160 patients and 225 carers in the UK.
If you join group 1, you complete a survey with a researcher that will ask about
- Your health needs
- Your care
- Your preferences and experiences
The researcher will also ask some more sensitive questions about how you prefer to be cared for. To make it easier, you answer these by talking about how you would act in made up situations.
The team may then ask if you would like to join group 2. People in group 2 will have up to 2 interviews with a researcher. The team may ask if your carer would like to be interviewed. The interviewer will ask about what did and didn’t help in relation to
- Your palliative care whilst you were in hospital
- Your independence
- Having your needs met
If you are a carer, the researchers will also ask about what did or didn’t help your friend or relative when getting, or trying to get palliative care in the hospital.
These interviews will last about an hour. The team will also talk to health professionals about their experience of getting palliative care in hospital.
In group 3, you fill out a questionnaire and return it to the study team by post in a prepaid envelope. The questionnaire will ask
- About the services and care your friend or relative had in the last months before they died
- Whether their needs and choices were met
- How your friend’s or relative’s death may have affected you
The team will arrange the survey and interview at a place convenient for you and them. If you need to travel, they can repay reasonable costs for this.
The survey will take between 30 and 60 minutes to complete. The 2 interviews will probably be at a different time to the survey. Each interview will last between 45 and 60 minutes. You have the interviews at a place and time convenient to you.
You will not have any side effects from taking part in this study.
Some people find it helpful to take part in these interviews. Others have found completing the surveys useful.
But you may find talking about your experiences upsetting or tiring. You will be able to stop during the interview if you need a break, or let the researcher know if you get tired.
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.
Professor Irene Higginson
Cicely Saunders International
National Institute for Health Research Cancer Research Network (NCRN)