"I was delighted to take part in a clinical trial as it has the potential to really help others in the future.”
A study looking at the needs of young people who have cancer for which cure is unlikely (BRIGHTLIGHT companion study)
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
This study is looking at the needs of people between 16 and 40 who have cancer for which a cure isn’t likely. It is related to another study looking at the care of teenagers and young adults with cancer called BRIGHTLIGHT.
The impact of incurable cancer on patients and their families is strongly influenced by age. But for adults in early to mid life, very little is known about their end of life experience or how care is best delivered.
In this study, the researchers want to find out what the most important parts of care are for young people with cancer when cure is not likely. They want to see whether there are differences between the experiences of people aged 16 to 24 and those aged 25 to 40. They also want to find out how young people and their families can be supported, and to identify the challenges that exist for health and social care professionals providing care.
You will not have any direct benefit from taking part in this study as your treatment and care will not be affected. But the information collected will help with how services are organised in the future.
Who can enter
You may be able to take part in this study if you
- Live in England
- Are between 16 and 40 years old
- Have cancer and have been told that curing your cancer is unlikely
You may also be asked to take part if someone in your family is a young person who has cancer that is unlikely to be cured and is taking part in the study. Or, you are a healthcare professional providing care for a young person with cancer who is taking part in the study.
The researchers hope that 45 young people will join this study, including 15 who are aged 16 to 24 and are taking part in the main BRIGHTLIGHT study. They also hope to talk to 30 family members and 30 healthcare professionals. The study will recruit people in 2 groups called cohorts.
If you are a young person with cancer and agree to take part, you will have 2 interviews with a member of the study team. They will ask about your experience of care. With your permission, they will make an audio recording of the interviews.
The second interview will take place between 2 and 4 months after the first one.
If you are a young person with cancer being treated at one of the participating hospitals or hospices and agree to take part you will have 1 interview with a member of the study team. They will ask about your experience of care. With your permission, they will make an audio recording of the interviews. You will also be asked to nominate a family member and a healthcare professional who will be invited to also take part in an interview
If you are a family member or healthcare professional, the study team will ask you to have an interview. Later, they will also ask you to take part in a workshop to discuss issues such as cancer diagnosis, symptom management, disclosure of information and communication.
All the information you give is
The interviews take about an hour each time.
The workshops for family members and healthcare professionals take about 2 hours.
You may find some of the interview questions upsetting as they could bring up a range of feelings and emotions. The researcher will put you in touch with your key worker if you want to talk these things through.
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 Jeremy Whelan
Marie Curie Cancer Care
University College London Hospitals NHS Foundation Trust