Abstract

Objective: Care partners (i.e., informal caregivers) of people with traumatic brain injury (TBI) are often overwhelmed, with limited time for self-care given their demanding caregiver role. To address this problem, we implemented a low-touch mobile health intervention designed to promote care partner self-awareness and self-care.

Design: This randomized controlled trial (RCT) included a baseline assessment of self-report surveys of health-related quality of life (HRQOL), care partner-specific outcomes, and the functional/mental status of the person with TBI, as well as a 6-month home monitoring period that included three daily questions about HRQOL, monthly assessments of 12 HRQOL domains, and the use of a Fitbit® to continuously monitor physical activity and sleep. HRQOL surveys were repeated at 3- and 6-months post-home monitoring.

Setting: Two academic medical centers

Participants: 254 TBI care partners

Interventions: The CareQOL app, a mobile health app designed to promote care partner self-awareness (through self-monitoring) and self-care (through personalized self-care push notifications)

Results: Care partners were randomized to self-monitoring alone (n=128) or self-monitoring plus self-care push notifications (n=126). Although we did not see improvements in HRQOL outcomes, nor in physical activity or sleep, we found that across all the different measures, approximately1/3 of the participants showed clinically meaningful improvements, 1/3 stayed the same, and 1/3 got worse; care partners who reported engagement in the intervention were more likely to show improvements than those who were not engaged. There was preliminary support for factors such as being male, caring for a person with posttraumatic stress symptoms, living in the same household as the person with TBI, being a spousal care partner, working, and being diagnosed with COVID-19 during the study were associated with increased risk for negative outcomes.

Conclusions: Findings suggest that engagement with the app, even when it is confined to self-monitoring alone, is associated with small improvements in HRQOL.

Trial Registration: ClinicalTrial.gov NCT04570930; https://clinicaltrials.gov/ct2/show/NCT04570930

Key words: caregivers; brain injuries, traumatic; quality of life; self-monitoring; mobile applications; outcome assessment, health care