Background: Real-time continuous glucose monitoring (RT CGM) with the added feature of remote monitoring in young children with type 1 diabetes (T1D) has recently become available but little is known about patient and caregiver’s experience of its use. The aim of this study was to explore parent everyday experiences of using this technology.
Methods: RT CGM-naive children with T1D diagnosed for >1 year, aged 2-12 years along with their parents, participated in a randomised cross-over study. All children participated in two 3 month periods of using their standard insulin therapy (pump or injections) with or without RT CGM and remote monitoring in a random order. Parents and children (8-12years) completed validated quality of life questionnaires before and after each 3 month block. In addition, 20 parents of 20 children were invited to participate in a semi-structured interview to explore their real-life experiences with the system at completion. Semi-structured interviews using open ended questions were analysed using thematic analysis. We are reporting on the outcomes of the interviews only.
Results: The children’s mean age was 9±1.8years (range 5-11.7) with diabetes duration of 3.4±2.1years and HbA1c at baseline of 7.5±0.7%. Five main positive themes emerged: Greater freedom in life for the children (eg possibility of sleep-overs), reduced amount of finger pricks, increased peace of mind for the parents, improved sleep quality for the parents and better understanding of how to manage and control their child’s diabetes. Parents reported that the main burden arising from using this device in everyday life were: the bulkiness of the RT CGM system, being overwhelmed with the amount of data and difficulties in keeping the smart phone/receiver in range.
Conclusion: Overall, parents reported more positive than negative experiences. These findings will inform the clinical application, education and further research in this field of rapidly changing technology.