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Quality of Life after Brain Tumour Diagnosis

Safe People

Organisation name

University of Edinburgh

Applicant name(s)

Dr Michael Poon

Funders/ Sponsors

The Brain Tumour Charity

Safe Projects

Project ID

DL_2021_046

Lay summary

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.

Public benefit statement

This project requires Lothian Data Safe Haven platform for storage and analysis of external data and does not require extraction of data from DataLoch. Time-course of quality of life after brain tumour diagnosis has not been well-studied. The BRIAN database uniquely has longitudinal quality of life measures throughout the patient journey – diagnosis, treatment, recovery, and end-of-life. Describing this time-course would help clinicians target support at times when it is most needed, reducing harm by personalising investigation and treatment decisions. For example, an important aspect of clinical management is imaging follow-up. General guidelines mandate imaging frequency based on time intervals, but evidence to support particular follow-up schedule is lacking. Using BRIAN’s real-world data, alongside population level data, we can examine the interactions of imaging frequency, treatment decisions, patient outcomes and quality of life metrics. More patient-centred imaging follow-up could target treatment decisions to changes in patient’s symptoms, rather than just their imaging, reducing anxiety from uncertain imaging results, and harm from unnecessary or premature (if imaging interval does not affect outcome) changes to treatment. Findings from this study will streamline the dynamic and reciprocal relationship between health data and brain tumour management using BRIAN data. The outcomes will also inform more patient-centric trial endpoints for future clinical studies.

Request category type

Public Health Research

Latest approval date

05/10/2022

Safe Data

Dataset(s) name

The Brain Tumour Charity dataset

Data sensitivity level

De-Personalised

Safe Setting

Access type

TRE