Subsequent Device Usage and Caregiver Attitudes to Do-It-Yourself Real-Time Continuous Glucose Monitoring (DIY-rtCGM) among Children with Type 1 Diabetes 3 Months after Participation in a Randomized Controlled Trial

Aim. To assess children’s subsequent device usage and caregiver attitudes to do-it-yourself real-time continuous glucose monitoring (DIY-rtCGM) at least 3 months after completing a randomized controlled trial (RCT). Methods. A brief online questionnaire or telephone call was used to collect the subsequent device usage and caregivers’ attitudes from a total of 55 families at least 3 months after their completion of an RCT investigating DIY-rtCGM adapted from their preexisting intermittently scanned glucose sensors plus education on using DIY-rtCGM system. To be eligible for the RCT, children had to be aged 2–13 years, have type 1 diabetes ≥6 months, and be rtCGM naïve. Data collected investigated current CGM use post-RCT and attitudes/user experiences to DIY-rtCGM in the months since RCT study support ended. Results. Overall, responses from 81.8% (45/55) of caregivers were received. Mean age of children was 9.0 ± 2.7 years, and 31 (68.9%) children used insulin pumps. After 3 months, 44.4% (20/45) of responding caregivers reported ongoing DIY-rtCGM use, and of these, only 13 used DIY-rtCGM as the primary glucose monitoring method 100% of time. Of the 25 (55.6%) families who ceased DIY-rtCGM, 40% (10/25) had transitioned to commercial rtCGM. More than half of families (60%, 12/20) who continued DIY-rtCGM use had a very or extremely positive attitude toward the technology and 75% (15/20) of these families planned to continue DIY-rtCGM use. However, signal loss and sensor inaccuracy remained the major reasons among all responders both for decreased DIY-rtCGM wear time and eventual cessation. Burden of use primarily related to technical errors that could not be solved, and alarms, both of which were reported to contribute to discontinuation. Conclusions. This study highlights that, among families voluntarily using DIY-rtCGM at least 3 months following support from a trial, more than half have ceased using DIY-rtCGM, with 40% of those discontinuing switching to commercial rtCGM. While overall perceptions of DIY-rtCGM remain largely positive, burdens of use are high and contribute to discontinuation.