ESPE2024 Free Communications Fetal and Neonatal Endocrinology (6 abstracts)
Patient and Carer Perspectives: A National Survey of Continuous Glucose Monitoring in Children with Congenital Hyperinsulinism in the UK
Helen Couch 1 , Andrew Pearson 2 , Neha Malhotra 3 , Michael Ferguson 4 , George Couch 5,6 , Clare Gilbert 7 , Kate Morgan 7 , Kelly Cassidy 8 , Sarah Worthington 9 , Elaine O'Shea 9 , Maria SalomonEstebanez 9 , Chris Worth 9 , Mohammed Didi 8 , Senthil Senniappan 8 , Indi Banerjee 9 & Antonia Dastamani 7
1Department of Paediatrics, Cambridge University Hospitals NHS Foundation Trust, Cambridge, United Kingdom. 2Clinical Audit Manager and Deputy Head of Quality, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom. 3Department of Paediatrics, Basildon University Hospital, Essex, United Kingdom. 4Your Path Solutions, Toronto, Canada. 5Department of Anaesthetics, Cambridge University Hospitals NHS Foundation Trust, Cambridge, United Kingdom. 6Cancer Research UK – Cambridge Institute, Cambridge, United Kingdom. 7Department of Paediatric Endocrinology and Diabetes, Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom. 8Department of Paediatric Endocrinology, Alder Hey Children's NHS Foundation Trust, Liverpool, United Kingdom. 9Department of Paediatric Endocrinology, Royal Manchester Children's Hospital, Manchester, United Kingdom
Background: Congenital Hyperinsulinism (CHI) is a rare condition that represents a substantial burden to affected children, their families and the health service (~£3.5 million annually).1–3 CHI is demanding, unpredictable and requires constant hypervigilance to minimise the risk of neurodisability and death. Rapid technological advancements in continuous glucose monitoring (CGM) have revolutionised blood glucose management for children with type 1 diabetes; CGM is now a standard of care.4 Access to CGM in CHI outside of clinical trials, often depends upon Independent Funding Requests or self-funding.5 National surveys by the British Society for Paediatric Endocrinology and Diabetes and the Children’s Hyperinsulinism Charity advocate for widening CGM access to patients with recurrent hypoglycaemia.5 CHI studies have provided limited data to support the user-reported benefits of CGM; understanding outcomes such as experience and satisfaction is crucial in CGM trials.6
Aim: To evaluate the patient perspective of the impact of CGM on quality of life and disease control in patients with CHI.
Methods: CGM-satisfaction (CGM-Sat) surveys7 were modified, by expert panel, for applicability to CHI and electronically distributed nationally, via the three CHI Highly Specialised Services, to patients with CHI ≥7 years of age (n = 20, 42-item survey), their parents (n = 86, 52-item survey) and teachers (n = 15, 16-item survey). The glucose monitoring system (GMS) survey7 (n = 45, 13-item survey) asked families to rate CGM.
Results: Respondents were positive about CGM device handling (62%), CGM’s influence on CHI management (70%) and quality of life (75%), and continued use (86%). Respondents agreed that CGM identified hypoglycaemia that would otherwise have been missed (84%) and CGM increased safety during physical activity and overnight (87%). Those with >12 months CGM experience (n = 62) were more positive than those with ≤12 months (n = 42) (P <0.001). The internal scale consistency, α-coefficient, of the modified CGM-Sat was >0.85 for each survey. GMS survey responses indicated that CGM alleviated problems experienced by families managing CHI. Themes included improved safety with CGM, better detection of hypoglycaemia, and increased freedom and independence, while acknowledging the issues with accuracy (particularly false low alerts) and device range.
Conclusion: Children, families, and their teachers report benefits from CGM in all aspects of living with CHI. They feel safer with CGM and report that it enables independence while detecting hypoglycaemia that would otherwise be missed. Children with CHI should have equity of access to technological advances such as CGM that enable better management of their condition and improve their quality of life.
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