"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 care of teenagers and young adults with cancer (BRIGHTLIGHT)
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
This is a study to find out if young people who are diagnosed with cancer between the ages of 13 and 24 have different outcomes depending on where they are treated and what professionals are involved in their care.
In 2005, the Government issued guidance on how to improve outcomes for teenagers and young adults with cancer. This stated that all young people should have access to specialist cancer services. Some parts of England have now established these services, but others have not, so the care teenagers and young people receive varies from place to place.
In this study, researchers want to see if where you have treatment and what sort of healthcare professionals are involved in your care affects how well you do.
The aims of the study are to
- Find out what helps young people with cancer to do well
- Work out what care and support services need to be in place to give young people the best chance of returning to as healthy a life as possible
Who can enter
You will be invited to take part in the study if you have been diagnosed with cancer in the last 4 months, are between the ages of 13 and 24 and live in England.
The study will follow the lives of young people for 3 years after they are diagnosed with cancer. The researchers hope to recruit 2,012 teenagers and young people. They will survey them 5 times over 3 years to see how they are getting on and how things change during this time.
If you take part in the study, the researchers will ask
- How does having cancer affect your life?
- What do you think of the cancer services you are receiving?
- What are the costs of cancer treatment and care to you and your family?
If you agree to take part, a researcher will contact you by phone to arrange a convenient time and place to talk to you. This will take place about 5 months after you are diagnosed with cancer. The researcher will ask about your health, any symptoms you had, your diagnosis, where you have treatment and which healthcare professionals have been involved in your care. They will also ask about your education or work, how you are feeling and how your cancer diagnosis has affected your life. You can skip any questions you don’t feel comfortable answering.
The researcher will ask you to keep a log of any extra costs you or your family have because of your cancer treatment, such as travel, medication, household or food costs. The record needs to be completed each week but they don’t need very much detail so it doesn’t take long to do. The researcher will show you how to fill in the log. You send it back to them in a prepaid envelope a few months later.
A member of the study team will contact you again in 6 months then after 18 months, 2 years and 3 years to see if you would be happy to complete another survey. These surveys can be completed online or by telephone. You can decide whether or not you want to take part each time. Your decisions will not affect the treatment or care you have.
The study team also want to get the views of people over the age of 16 who have supported and cared for you since your cancer diagnosis. They will give you a paper questionnaire for the person (or people) who have cared for you. This takes about 10 minutes to complete.
All the information you provide is
The interview will take about 40 minutes and will be at a time and place that suits you.
There are no side effects associated with this study. Taking part will not affect your treatment or support in any way.
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
Experimental Cancer Medicine Centre (ECMC)
London South Bank University
NIHR Clinical Research Network: Cancer
NIHR Programme Grants for Applied Research (PGfAR)
National Cancer Research Institute Teenage and Young Adult Clinical Studies Group
North West Cancer Intelligence Service
University College London (UCL)
University Hospital Southampton NHS Foundation Trust
University of Leeds