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Hirschsprung Disease: The Rise of Structured Transition and Long-term Care
Amanda W Harrington1, Alessandra C Gasior2,3, Hulda Einarsdottir1
1Department of Surgery, Yale University School of Medicine, New Haven, CT.
Journal of Pediatric Gastroenterology and Nutrition
|May 21, 2019
Summary
Adults with Hirschsprung disease (a congenital anomaly) often face lifelong gastrointestinal issues. Improved care transition from pediatric to adult settings is crucial for better long-term management and outcomes.
Area of Science:
- Pediatric Surgery
- Gastroenterology
- Congenital Anomalies
Background:
- Hirschsprung disease is increasingly survivable into adulthood.
- Adult patients present with complex issues previously rare in adult care.
- Current care transition models for this population are often inadequate.
Purpose of the Study:
- To review the current state of care transition for adult Hirschsprung disease patients.
- To identify specific long-term needs of this patient group.
- To propose guidelines for an improved pediatric-to-adult transition model.
Main Methods:
- Literature review on care transition and long-term outcomes.
- Analysis of challenges faced by colorectal surgeons and gastroenterologists.
- Synthesis of findings to inform guideline development.
Main Results:
- Most adult Hirschsprung disease patients experience lifelong gastrointestinal complications.
- Quality of life is generally good, but complications persist.
- A formalized transition process is needed.
Conclusions:
- A structured transition of care is essential for adult Hirschsprung disease patients.
- Guidelines can support pediatric surgeons, patients, and adult specialists.
- Improved transition will enhance long-term gastrointestinal management and patient outcomes.
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