ESPE Abstracts

Background & Aims: Hypoglycaemia is a constant threat for all patients with congenital hyperinsulinism (CHI) and, left untreated, can lead to neurological damage and impaired development. To improve glycaemic monitoring, self-monitoring-blood-glucose (SMBG) is increasingly being replaced by Continuous Glucose Monitoring (CGM) with potential to identify illness patterns and treatment responses although with unproven benefit for patients and families. Explorations of families’ experiences have focused on those presently using CGM rather than those who have declined regular use. In contrast, our study eliminates positive bias to focus on families who have discontinued CGM and thus provides an essential alternative perspective of CGM use.

Methods: Families of patients with CHI treated in two specialist centres, who had used but discontinued CGM, were contacted for a semi-structured interview over a two month period. Families’ experiences and narratives were transcribed in real time and analysed for themes.

Results: Of the 14 families eligible for inclusion, 10 were contactable and all agreed to take part. Mean age (range) of patients was 7 years (1 – 18 years). Known CHI-causing genetic mutations were present in 5 patients and all patients received disease modifying therapy for CHI. Dexcom G6 CGM had been used in all patients for a mean (range) duration of 91 (0-202) days (median 55). The primary themes identified were: pain; inaccuracy and device set up. Pain was experienced by 4/10 (40%) participants and included siting and removal of the sensor as well as pain whilst in situ. Inaccuracy was a primary complaint for 9/10 (90%) participants, specifically around falsely low readings. All participants commented that device set up could be much improved upon: receiver device range; sensor changes; and usability by children were all cited as reasons for stopping CGM use. Of this group, 7/10 (70%) believed that older patients might have better tolerance although, contrastingly, 2/10 (20%) believed tolerance would be better if the patients were younger. Importantly, 7/10 (70%) parents commented that they would like to use CGM for ongoing monitoring but devices were not sufficiently convenient to convince young patients.

Conclusions: Whilst many families with CHI continue to benefit from CGM, it is vital to understand perspectives from families who have discontinued use. The unheard patient voice has highlighted problems with CGM application that include pain, inaccuracy, range anxiety and non-adherence in younger children. These issues must be addressed if children with hypoglycaemia disorders are not to be left behind.