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Subsequent Device Usage and Caregiver Attitudes to Do-It-Yourself Real-Time Continuous Glucose Monitoring (DIY-rtCGM)
Yongwen Zhou1,2, Mona M Elbalshy1, Sara E Styles3
1Department of Women's and Children's Health, Dunedin School of Medicine, University of Otago, Dunedin, New Zealand.
Insights
More than half of families stopped using do-it-yourself real-time continuous glucose monitoring (DIY-rtCGM) after a trial, with many switching to commercial systems. High usage burdens and technical issues contributed to discontinuation despite positive attitudes.
Area of Science:
- Pediatric Endocrinology
- Biomedical Engineering
- Diabetes Technology
Background:
- Do-it-yourself real-time continuous glucose monitoring (DIY-rtCGM) offers an alternative for glucose monitoring in children with type 1 diabetes.
- Previous randomized controlled trials (RCTs) have investigated the efficacy and usability of DIY-rtCGM systems.
Purpose of the Study:
- To evaluate long-term device usage and caregiver attitudes towards DIY-rtCGM in children with type 1 diabetes at least 3 months post-RCT.
- To understand the factors influencing continued use or discontinuation of DIY-rtCGM after study support ends.
Main Methods:
- A follow-up online questionnaire and telephone survey were administered to 55 families who completed an RCT on DIY-rtCGM.
- Data collected included current CGM use, caregiver attitudes, and user experiences with DIY-rtCGM post-RCT.
Main Results:
- 81.8% of caregivers responded; 44.4% reported ongoing DIY-rtCGM use, with 13 using it as their primary method.
- Of those who stopped DIY-rtCGM (55.6%), 40% transitioned to commercial rtCGM.
- Major reasons for decreased use and discontinuation included signal loss, sensor inaccuracy, and technical burdens.
Conclusions:
- Over half of families discontinued DIY-rtCGM use within months of RCT completion, often switching to commercial rtCGM.
- Despite positive attitudes, significant usage burdens and technical challenges hinder sustained DIY-rtCGM adoption.
- Future DIY-rtCGM development should address reliability and user-friendliness to improve long-term adherence.
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.
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