ESPE Abstracts

Background: Congenital Hyperinsulinism (HI) is the most common cause of persistent hypoglycemia in newborns and children. In HI, the dysfunction of pancreatic beta-cells leads to excessive insulin production and severe hypoglycemia, which often causes irreversible neurological damage. The management of infants and children with HI is intensive, often requiring around-the-clock care and frequent visits to healthcare specialists, and places significant burden on the families of affected children.

Aim: This study's aimwas to describe aspects of the financial burden of HI on the families of people with HI.

Methods: Caregivers of people with HI who consented to participate in the HI Global Registry (HIGR) and completed the Caregiver Quality of Life (CG-QOL) survey were included in this study. The CG-QOL was designed by members of the HIGR Steering Committee specifically for caregivers of people with HI. All variables are categorical and are reported using descriptive statistics.

Results: 198 caregivers of individuals with HI completed the CG-QOL survey. Most caregivers were the parent of a child (< 3 years, 46%; 4-9 years, 30%; 10-17 years, 16%; 18+ years, 8%). 59% of caregivers reported that their household income had been negatively impacted due to the participant’s HI. 38% of caregivers had at least some difficulty paying for the costs associated with caring for the participant with HI and 17% have experienced difficulties paying for household expenses. 30% of caregivers reported that they must travel more than 100 miles to visit the specialist that treats the participant’s HI, and 20% selected only negative phrases to describe the travel to the specialist (“demanding”, “complicated”, “disruptive”). 43% of families reported visiting a healthcare specialist at least quarterly. 39% of caregivers reported that they have missed at least some school or work in the past year due to the participant’s HI.

Discussion: HI requires intensive management and frequent healthcare visits to monitor patients and optimize treatment protocols. This places a significant financial and time burden on the families of people with HI. For some families, this leads to difficulties paying for medical and household expenses and reduced time at work or school, which may further impact current income and/or future earning potential. Clinicians who manage the care of people with HI should ensure that families are well-supported in all aspects of life beyond clinical management, including connection to community and government support programs, coordinating with local physicians, and offering telehealth appointments with specialists whenever possible.