Background: Glioblastoma multiforme (GBM) is an aggressive brain tumour associated with a poor prognosis and high symptom burden including sometimes debilitating neurologic and cognitive symptoms. Treatment is therefore not only aimed at prolonging survival, but also on maintaining an optimal level of quality of life (QOL). This could be facilitated by keeping track of QOL issues through regular self-report. Recently, a patient-led non-profit movement (OurBrainBank) has developed the OurBrainBank app to enable GBM patients to track their QOL in a very simple and intuitive way. Patients can view, download and share their own data, and anonymized data is made available for research purposes. Thus, it empowers patients while also advancing research.
Objective and aims: We aim to make the OurBrainBank app available to patients in the United Kingdom, and learn about patient participation and compliance.
Methods: The app was launched in December 2019. The pilot is designed to collect data over a period of 100 days. All data completion is optional and patients do not have to enter data every day. Participation and compliance will be evaluated descriptively through 1) the number of patients registering to use the app in the UK; 2) the number of completed data points on the whole, and per participant; 3) functionalities used to track data; and 4) overall app compliance.
Study team: Dr Florien Boele
Collaborators:
Jake Arnold-Foster, Carradale/Futures LLP
Helen Bulbeck, brainstrust
Aurelia Driver, OurBrainBank
Kelli Duprey, University of Columbia
Bruce Hellman, UMotif
Jessica Morris, OurBrainBank