The impact of subtotal pancreatectomy on people with congenital hyperinsulinism and their caregivers - Report - 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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Clinical Report: Effects of Subtotal Pancreatectomy on Patients with Congenital Hyperinsulinism

Overview

This study examines the long-term impacts of subtotal pancreatectomy on patients with congenital hyperinsulinism (HI) and their caregivers. Findings indicate significant post-surgery challenges, including diabetes and pancreatic insufficiency.

Background

Congenital hyperinsulinism is a rare but serious condition leading to recurrent hypoglycemia in infants. Subtotal pancreatectomy is a treatment option for diffuse HI when medical therapies fail, yet the long-term consequences of this surgery are not well understood.

Data Highlights

OutcomePercentage
Diabetes44%
Pancreatic Insufficiency41%
Ongoing Medication Use for Hypoglycemia24%
Normal Glucose Status at Discharge9%

Key Findings

  • 71% of participants underwent subtotal pancreatectomy before two months of age.
  • At follow-up, 44% reported diabetes and 41% reported pancreatic insufficiency.
  • 24% of participants continued to use medication for hypoglycemia post-surgery.
  • Continuous glucose monitoring indicated suboptimal time in range, regardless of diabetes status.
  • Caregivers reported significant stress during hospitalization and post-discharge periods.
  • Children perceived less burden from their condition compared to their caregivers.

Clinical Implications

Healthcare providers should be aware of the potential long-term complications following subtotal pancreatectomy for congenital hyperinsulinism, including diabetes and pancreatic insufficiency.

Conclusion

Subtotal pancreatectomy for diffuse congenital hyperinsulinism can lead to significant long-term health challenges.

Related Resources & Content

  1. The Journal of Clinical Endocrinology & Metabolism, 2023 -- Link Between Intraoperative Hypotension During Pancreatectomy and the Onset of Postoperative Diabetes
  2. The Journal of Clinical Endocrinology & Metabolism, 2023 -- Management of Patients with Diabetes Resulting from Exocrine Pancreatic Disorders
  3. Obesity Surgery, 2016 -- Robotic Near-Total Distal Pancreatectomy for Nesidioblastosis Following Roux-en-Y Gastric Bypass Surgery
  4. The Journal of Clinical Endocrinology & Metabolism, 2023 -- Assessment of Pancreatic Islet Function in Infants with Beckwith–Wiedemann Syndrome and Congenital Hyperinsulinism
  5. International Guidelines for the Diagnosis and Management of Hyperinsulinism - PMC, 2023
  6. International Guidelines for the Diagnosis and Management of Hyperinsulinism - PMC
  7. https://academic.oup.com/jcem/article/106/4/1542/6105046

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