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

CONTEXT: Congenital hyperinsulinism (CHI) causes severe and recurrent hypoglycemia with a 33% to 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 specialized 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). Eighty-six percent of users reported checking the CGM 1 to 5 times per hour. Users reported perceived improvements in safety, hypoglycemia detection, freedom, and independence, despite concerns with accuracy and device range. CONCLUSION: Patients with CHI and their carers reported that they feel safer and perceive benefits from CGM in all aspects of living with CHI.