A new Welsh study is aiming to revolutionise how clinical trials measure the impact of new brain tumour drugs on a patient’s physical and emotional wellbeing, alongside assessment of their survival.
Led by Professor Anthony Byrne from Cardiff University, and in collaboration with Professor Melanie Calvert from the University of Birmingham, the research will culminate in a consensus that will define the most important outcomes to measure, according to brain tumour patients, carers and professionals.
The study has received funding of more than £150,000 from The Brain Tumour Charity and patients have welcomed the new research, saying it is vital to better understand the factors that influence both quality of life and survival.
Clinical trials for brain tumours traditionally focus on how a patient’s tumour responds to a new treatment, and whether it may extend life or delay progression of the disease. Integrating these new findings into clinical trials across the UK will drive improvements in people’s lives after brain tumour diagnosis, treatment and care, the charity said.
Professor Anthony Byrne, Clinical Director of the Marie Curie Research Centre at Cardiff University, said: "In the short term, this project will help the people with a brain tumour who contribute to this research by reassuring them that their opinions and needs are being heard and will empower them to have a positive impact on the future of quality of life research. "In the longer term, it will mean that understanding what works from a patient and carer perspective will have a higher priority when assessing the benefits of potential new treatments."
Andrew Dean-Young, a Cardiff-based NHS physiotherpist, who was diagnosed with a brian tumour in 2016, is backing the research.
"In 2016 I was finally working and living in the same city and thought my life was made, but whilst out on a gentle run I had what appeared to be a seizure and found myself on the floor. I was rushed to the local hospital and after lots of tests it was eventually discovered that I had a brain tumour," he said.
"This completely changed my life, I was no longer allowed to drive, I’d gone from being a fit and healthy man moving into my 30’s with exciting times ahead of me, to then having this serious condition which turned my life upside down."
Andrew, who is now five years post-diagnosis, added: "I think this new research by Dr Byrne looking into the quality of life for people with brain tumours is a hugely vital piece of work as I feel that this is something that people do not understand. Despite having completed treatment and appearing healthy on the surface, lots of key aspirations in my life have now gone or been delayed and it has taken five years for me to get back on an even kilter mentally and emotionally. "Any research into supporting and improving the quality of life of what for lots of brain tumour patients is an unseen cancer due to lack of observable scars is vital."
Professor Byrne and his team will examine the things that are most important to people living with a brain tumour. Specifically, they’ll talk with representatives from different groups of the neuro-oncology community including people with a glioma brain tumour (grades II-IV) and their families.
They will collate the information they receive with research done by other brain tumour researchers to form a long list of potentially important Patient Reported Outcomes (PROs). PROs are a measure used in clinical trials to record a person’s experience of their disease and its treatment.
This long list will be narrowed down to highlight the most important aspects of "good" survival according to the people with lived experience, and will define a core outcome set (COS) that will be promoted for use across future UK brain tumour clinical trials.
Dr David Jenkinson, Interim CEO at The Brain Tumour Charity, said: "Accurate and effective research into how brain tumours and their treatments affect someone’s quality of life requires consistent and appropriate measures. We are in the foundation stages of ensuring that all quality of life data in brain tumour clinical trials can be used to influence future research. "This study will define a core outcome set of PROs that encompass the measures most meaningful to people with brain tumours, and those they hold dear."