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.
Claudia Laird (27), a children's nurse from Burnley in Lancashire was diagnosed with a brain tumour in January 2022 when she was 24. Her tumour was 7cm by 5cm and doctors believed it had been growing in her head for 15 years. Claudia went to the GP several times due to headaches, fatigue, memory loss, hallucinations and sickness. She initially thought she had a virus, but a scan revealed she had an astrocytoma, a form of brain cancer.
"I was a healthy person, so it was hard at first to get a diagnosis. But when I did, from the scan to surgery was like a whirlwind and I had emergency neurosurgery. Thankfully the surgeon believed he'd removed the whole tumour. Now I just go for six-monthly scans. While I feel well physically, and no longer on treatment, you're left with psychological trauma and you worry about what will happen if the tumour grows back. You have to pick up your life where you left off but it's a 'new normal'. Forming relationships is hard and I haven't had a partner since all this happened. I'm not 100 per cent back to where I was, and have some short term memory loss and I can get overwhelmed easily. Hopefully that will improve in time and the brain can re-learn things. It's still quite early days and it's still hard for me but I take it day by day.
"I was discharged two days after surgery and I didn't even take any time off work. My mum has been a massive support system, and I don't think I'd be here without her, but having a professional like a support worker you can go to with questions would be so useful. I've been writing poetry which has been great therapy. I do a lot of charity work and fundraising to give back and next month I'm helping with a creative workshop for other young people who have brain injuries. I also do a lot of yoga, pilates and relaxation classes which really help. I'm enjoying life and see things differently now and appreciate everything so much more than before."
