Researchers at Cardiff University have been awarded £155,000 from the Brain Tumour Charity to develop a standardised way of recording patient reported outcomes for brain tumour trials.

Brain cancer studies traditionally focus on tumour size and maintaining patient survival. But there is growing recognition that studies need to better consider information about outcomes such as quality of life. This is particularly relevant in brain cancers like high grade glioma, where survival benefits are modest.

Quality of life naturally means something different to every patient. Some patients might want to prioritise quantity of life over quality, for example they might have a grandchild on the way or want to make it to a family wedding. Others may prefer to prioritise their fitness over survival length to enable them to lead a more active life.

Many brain tumour trials gather information about patients’ quality of life, but the vast majority either never report it, or do not assess its importance alongside tumour response. There is also no standardised way of measuring quality of life, which makes comparing studies to find the best ways of assessing patients very difficult.

To remedy this, MediWales reports Prof Anthony Byrne and his team at Cardiff University will seek consensus amongst patients, families and researchers about essential areas of patient or family experience to be collected across every glioma trial. The consensus will produce a patient oriented Core Outcome Set (COS) to be applied across all UK studies.

COS development in other conditions has improved the quality and consistency of information captured, which enables better data sharing to improve the way we routinely treat patients.

Anthony Byrne, Chief Investigator for this study, said “This project will produce a high quality, consistent approach to measuring patient and family outcomes in glioma studies. It will ensure that future trial results reflect impacts of treatment on lived experience and quality of life, helping brain cancer patients and their families make informed choices about their care.

“The project has also established strong links with another trial [the Tessa Jowell BRAIN MATRIX trial] that is specifically designed to support clinicians with decision making based on a patient’s unique situation. Working together means our patient data can be evaluated in the context of a broad spectrum of patients with different types of brain cancer.”

The study will run for twenty months and the results are hoped to improve the way glioma patients are treated in the NHS and beyond.

The project is a collaboration between the Marie Curie Research Centre, the Wales Cancer Research Centre and the Centre for Patient Reported Outcomes at Birmingham University as well as cross collaboration between Cardiff University Centre for Trials Research and Birmingham Clinical Trials Unit.