Project Lead: Dr Michael Poon

Our understanding of life after brain tumour diagnosis is limited. Healthcare professionals often see brain tumour patients at the time of investigation or treatment, therefore only seeing snapshots of a patient’s life. Accurate description of life after brain tumour diagnosis is important to detect behavioural patterns that may be associated with deterioration and to inform research studies. The Brain Tumour Charity developed an online app accessible by computers and mobile phones called BRIAN that allows patients and their carers to share their information on events and quality of life over time. This provides a unique opportunity to study how aspects of life changes and how these changes may correlate with clinical events. This study will summarise the characteristics of people submitting data through the BRIAN app and use the data to describe the quality of life over time. We will also examine how the journey after brain tumour diagnosis may differ depending on the tumour type and treatment received. Findings from this study will help clinicians, patients and their carers to better understand and prepare for life after brain tumours diagnosis, and our results will generate more research questions to improve brain tumour experience.

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