ESPE Abstracts

Background and Aims: In patients with congenital hyperinsulinism (CHI), recurrent hypoglycaemia can lead to longstanding neurological impairments. At present, glycaemic monitoring is with infrequent fingerprick tests; a practice which can miss hypoglycaemic episodes between tests. Continuous glucose monitoring (CGM) is a promising alternative method which has the utility to identify risk and patterns of hypoglycaemia. Although CGM is well established in type 1 diabetes, its use has only been described in small studies in patients with CHI. In such studies, medical perspectives have been provided while ignoring the views of families using CGM. Within this qualitative study, we have aimed to explore families’ personal experiences of using CGM in order to inform future clinical strategies for the management of CHI.

Methods: Ten patients with CHI in a specialist centre using CGM for sixteen weeks as a glucose monitoring tool were invited to participate. Audio-recorded semi-structured interviews were conducted with nine families in whom patient ages ranged between two and seventeen years. Transcripts of the audio recordings were coded and analysed using an inductive thematic analysis method.

Results: Analysis revealed five core themes: CGM’s function as an educational tool; behavioural and routine changes; positive family experiences; negative family experiences and end users’ design improvements. Parents reported that close monitoring and retrospective analysis of glucose trends allowed for enhanced understanding of factors that influenced glucose levels at various times of the day. They noted more hypoglycaemic episodes than previously encountered through fingerprick home glucose tests; this new knowledge prompted modification of daily living routines to prevent and improve the management of hypoglycaemia. CGM use was viewed favourably as offering parental reassurance, reduced fingerprick tests and predictive warnings. However, families also reported unfavourable aspects of alarms and questionable accuracy at low glucose levels. Adolescents were frustrated by the short proximity range for data transmission resulting in the need to always carry a separate receiver. Overall, families were positive about the use of CGM, but expected application to be tailored to their child’s medical condition.

Conclusions: Patients and families with CHI using CGM noticed trends in glucose levels which motivated behavioural changes to reduce hypoglycaemia. Participants generally found that the advantages of CGM outweighed the disadvantages. Families expressed that CHI-specific modifications and improved accuracy would enhance their experience. Future design of CGM should incorporate end users’ opinions and experiences for optimal glycaemic monitoring of CHI.