The impact of subtotal pancreatectomy on people with congenital hyperinsulinism and their caregivers - Summary - MDSpire

The impact of subtotal pancreatectomy on people with congenital hyperinsulinism and their caregivers

  • By

  • Kristen E. Rohli

  • Indraneel Banerjee

  • Henrik Thybo Christesen

  • Diva D. De Leon

  • Lauren N. Lopez

  • Julie Raskin

  • Tai L. S. Pasquini

  • June 22, 2026

  • 0 min

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Objective:

To investigate long-term clinical and lived impacts of subtotal pancreatectomy for diffuse congenital hyperinsulinism (HI) as reported by affected families.

Approach:
    Key Findings:
    • 71% of participants underwent subtotal pancreatectomy before two months of age (24 out of 34).
    • Only 9% (3 out of 34) had normal glucose status at discharge.
    • At follow-up, 44% (15 out of 34) reported diabetes, 41% (14 out of 34) pancreatic insufficiency, and 24% (8 out of 34) ongoing medication for hypoglycemia.
    • Continuous glucose monitoring showed suboptimal time in range regardless of diabetes status.
    • Caregivers reported high stress and mental health challenges during hospitalization and post-discharge.
    Interpretation:

    Subtotal pancreatectomy may be necessary for managing severe hypoglycemia in diffuse HI, but it is not curative and leads to lifelong management challenges.

    Limitations:
    • Small sample size for qualitative interviews.
    • Potential selection bias in participant recruitment.
    Conclusion:

    The study reports the long-term impacts of subtotal pancreatectomy on patients with diffuse HI and their families.

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