Continuous Glucose Monitoring in the Management of Congenital Hyperinsulinism: A National User-Satisfaction Survey, UK.

Abstract

Context: Congenital Hyperinsulinism (CHI) causes severe and recurrent hypoglycaemia with a 33-50% risk of neurodisability necessitating rigorous glucose monitoring. Continuous glucose monitoring (CGM) is now widely used in CHI with limited data on user-reported benefits. There are no validated instruments available to assess the impact of CGM use on quality of life (QOL) in CHI.

Objective: To evaluate CGM user satisfaction of patients with CHI and their carers.

Design: Modified CGM-satisfaction (CGM-Sat) and glucose monitoring surveys (GMS) were distributed electronically to CHI families using CGM.

Setting: CHI Highly Specialised Services, UK, May to August 2023.

Patients or other participants: Parents (n = 86) and teachers (n = 15) of patients with CHI using CGM (0-18 years old), and patients themselves if ≥7 years old (n = 20).

Main outcome measures: User reported ease of CGM handling, influence of CGM on CHI management and QOL, and desire for continued use of CGM.

Results: Most respondents reacted positively to statements regarding: CGM device handling (58% agreed or strongly agreed), influence on CHI management (70%), QOL (75%), and continued use (86%). Satisfaction with CGM was positively correlated with duration of use (r = 0.40, p < 0.001). 86% of users reported checking the CGM 1-5 times per hour. Users reported perceived improvements in safety, hypoglycaemia detection, freedom and independence, despite concerns with accuracy and device range.

Conclusions: Patients with CHI and their carers reported that they feel safer and perceive benefits from CGM in all aspects of living with CHI.