Assessing Isolation and Social Support of GBM Groups Through Digital Phenotyping

Abstract

This study investigates how social isolation and loneliness affect glioblastoma (GBM) patients and their caregivers. GBM is a severe brain cancer that often leads to substantial physical limitations, reduced energy, and decreased social support. Traditional patient-reported outcomes (PROs) can be burdensome, especially when symptom loads are high, and engagement with active reporting tends to drop over time. Instead, this project leverages passive data collection via the Beiwe mobile app, which gathers information on mobility (e.g., time spent at home, distance traveled) and deidentified communication patterns (e.g., number of calls) without requiring additional effort from participants. By correlating these passive measures with periodic surveys assessing loneliness and social support, researchers aim to gain a more comprehensive view of social interactions and isolation.

Primary objectives focus on evaluating whether passive data can better reflect social isolation compared to active reporting. Secondary aims include examining social isolation in caregivers, characterizing social interaction patterns, and comparing dropout rates between active and passive data. Exploratory analyses will compare patient and caregiver data features and investigate links between social isolation and overall survival. Ultimately, the goal is to inform more targeted interventions to support social well-being, reduce caregiver stress, and potentially enhance outcomes in the GBM community.