A research study conducted by The Christie NHS Foundation Trust in Manchester and The University of Manchester aims to improve the quality of life for young people who have survived a brain tumour.
The research looks, for the first time, into how to assess the range of ongoing needs after having a brain tumour for young people between 16-39 year olds.
Using a questionnaire designed with the help of nearly 130 patients, detailed information is now going to be gathered from 100 brain tumour survivors as part of their follow-up consultation. Researchers will then assess the impact the survey has on providing personalised care to improve the long-term support after treatment. If this trial improves the experience for patients at The Christie, then the plan is to roll it out at to other hospitals around the UK.
Dr Kate Law, a research fellow and specialist nurse at The Christie and honorary research associate at The University of Manchester, who is leading on the research study known as YOU-CAN said: “A third of all childhood cancers are brain tumours and survival is highest for 15 – 39 year olds. Currently there is no assessment tailored specifically for young people with a brain tumour. We have identified an unmet need, and want to address this to make life better for young brain tumour survivors in the future.
“At The Christie alone we see approximately 550 patients who were diagnosed with brain cancer as a child or young adult every year on long-term follow-up. What is fantastic is that people are living longer and recovering from brain tumours, but we are aware that often these very determined and resilient young people need help with independent living, forming relationships and friendships, starting a family and managing the emotions associated with the long-term effects of a brain tumour. They want to make the most out of life and we need to support them in doing this.
“It is hoped that the evidence gathered from the YOU-CAN study will be a step towards a change in clinical practice in the future where every young person has access to a multi-disciplinary team for on-going support after being treated for a brain tumour.