Background

Patients with glioblastoma 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-outcomes reporting app (OurBrainBank; OBB) for glioblastoma 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 ten 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-February 2021, OBB was downloaded by 630 individuals, with 15,207 sets of ten health-outcomes submitted. Higher engagement was associated with being a patient rather than caregiver (X 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 (X 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 glioblastoma patients’ health-outcomes. The long-term goal is to create a unique database of thousands of de-identified glioblastoma patients, with open-access to qualified researchers.