Background: Patients with glioblastoma (GBM) typically have high symptom burden impacting on quality of life. Mobile apps may help patients track their condition and provide real-time data to clinicians and researchers. We developed a health outcome reporting app (OurBrainBank [OBB]) for GBM patients. Our primary aim was to explore the feasibility and take-up of OBB. Secondary aims were to examine the potential value of OBB app usage for patient well-being and clinical research.
Methods: Participants (or caregiver proxies) completed baseline surveys and tracked 10 health outcomes over time. We evaluated usage and engagement, and relationships between clinical/sociodemographic variables and OBB use. Participant satisfaction and feedback were described. To demonstrate usefulness for clinical research, health outcomes were compared with corresponding items on a validated measure (EQ-5D-5L).
Results: From March 2018 to February 2021, OBB was downloaded by 630 individuals, with 15 207 sets of 10 health outcomes submitted. Higher engagement was associated with being a patient rather than a caregiver (χ 2(2,568) = 28.6, P < .001), having higher self-rated health scores at baseline (F(2,460) = 4.8, P = .009) and more previous experience with mobile apps (χ 2(2,585) = 9.6, P = .008). Among the 66 participants who completed a feedback survey, most found health outcome tracking useful (average 7/10), and would recommend the app to others (average 8.4/10). The OBB health outcomes mapped onto corresponding EQ-5D-5L items, suggesting their validity.
Conclusions: OBB can efficiently collect GBM patients' health outcomes. The long-term goal is to create a unique database of thousands of deidentified GBM patients, with open access to qualified researchers.
Keywords: brain cancer; glioblastoma; mHealth; mobile app; symptom tracking.
© The Author(s) 2021. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology.