The impact of subtotal pancreatectomy on people with congenital hyperinsulinism and their caregivers
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By
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Kristen E. Rohli
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Indraneel Banerjee
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Henrik Thybo Christesen
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Diva D. De Leon
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Lauren N. Lopez
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Julie Raskin
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Tai L. S. Pasquini
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June 22, 2026
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Clinical Scorecard: Effects of Subtotal Pancreatectomy on Patients with Congenital Hyperinsulinism and Their Support Systems
At a Glance
| Category | Detail |
|---|
| Condition | Congenital Hyperinsulinism |
| Key Mechanisms | Insulin hypersecretion by pancreatic β-cells leading to severe hypoglycemia. |
| Target Population | Infants and children with diffuse congenital hyperinsulinism. |
| Care Setting | Multidisciplinary clinical evaluation and treatment. |
Key Highlights
- Subtotal pancreatectomy is a treatment option for diffuse congenital hyperinsulinism.
- Post-surgery, 44% of patients developed diabetes and 41% experienced pancreatic insufficiency.
- Caregivers reported significant stress and challenges during hospitalization and post-discharge.
- Children perceived less burden than their caregivers regarding health management.
- Surgery was not curative and led to lifelong management needs.
Guideline-Based Recommendations
Diagnosis
- Early diagnosis of congenital hyperinsulinism is critical to prevent long-term complications.
Management
- Pancreatectomy may be necessary when medical therapy fails to control severe hypoglycemia.
Monitoring & Follow-up
- Continuous glucose monitoring is recommended to assess glycemic control post-surgery.
Risks
- Surgical intervention is associated with risks of diabetes and pancreatic insufficiency.
Patient & Prescribing Data
Individuals with diffuse congenital hyperinsulinism undergoing ≥75% pancreatectomy.
Ongoing medication use for hypoglycemia was reported in 24% of patients post-surgery.
Clinical Best Practices
- Utilize a multidisciplinary team for optimal evaluation and treatment of congenital hyperinsulinism.
- Access specialized imaging technology for pre-operative assessment.
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