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.