Endocrine Abstracts

JOINT720

Background: Congenital Hyperinsulinism (HI) is the most common cause of persistent hypoglycemia in newborns and children. In HI, dysregulated pancreatic beta-cells produce too much insulin, leading to severe hypoglycemia and, in many cases, irreversible neurological damage. An under-studied and under-recognized feature of HI is feeding issues.

Aim: This study’s aim was to characterize the presence of feeding issues in individuals with HI and the impact on their families.

Methods: People with HI, or their caregivers, who consented to participate in the HI Global Registry (HIGR) and completed the Diet & Feeding survey were included in this study. The survey was approved by members of the HIGR Steering Committee. All variables are categorical and are reported using descriptive statistics and chi-square tests.

Results: 246 individuals were included in this survey (80% <18 years old). 65% reported that they had experienced feeding issues, with the most common issues reported including poor appetite (67%) and refusing to eat (59%). Individuals who reported tube feeding were significantly more likely to have experienced feeding issues than those who did not use tube feeding (chi2, P< 0.001). 36% reported that feeding issues had fully resolved, and the majority reported full resolution by 6 years of age (83%). However, 63% reported feeding issues had not fully resolved, and 41% of those individuals were 7 years or older. 62% of individuals reported receiving feeding therapy, however feeding therapy did not have a significant impact on whether feeding issues resolved (chi2, P = 0.713). However, details such as the type or duration of feeding therapy were not collected in this survey.

Discussion: Feeding issues are poorly understood within the context of HI. It is unknown exactly what leads to feeding issues, although factors such as direct pathophysiology of HI, the effects of HI medications, and the psychological impacts of the heightened importance of feeding and over-feeding to prevent hypoglycemia may play a role. Many individuals with HI and their caregivers feel that feeding issues represent a major gap in the clinical management of HI. One parent commented: “Management of feeding issues is something which I feel is horrendously lacking in HI and lack of attention and mismanagement has caused my son far more difficulties and trauma than should have needed to be the case”. More research into the causes of feeding issues and the most effective therapies for people with HI are urgently needed.