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Transitional Care in Patients With Hirschsprung Disease: Those Left Behind
David S Thompson1, Joseph R Davidson1, Kathryn E Ford1
1Department of Neonatal and Paediatric Surgery, Great Ormond Street Hospital for Children, London, United Kingdom.
Adult patients with Hirschsprung disease often experience worsening bowel function and quality of life after pediatric care. Improved transitional care is crucial for those whose condition significantly impacts their lives post-discharge.
Area of Science:
- Gastroenterology
- Pediatric Surgery
- Adult Congenital Heart Disease
Background:
- Hirschsprung disease presents variable long-term effects.
- Understanding adult challenges informs transitional care.
Purpose of the Study:
- Explore outcomes in adult Hirschsprung patients.
- Assess transitional care experiences.
Main Methods:
- Cohort study at a single center.
- Surveyed adult patients treated for Hirschsprung (1977-2001).
- Assessed transitional care status, bowel function, and quality of life.
Main Results:
- 20/139 patients received transition care; these had poorer outcomes.
- 17% experienced soiling at discharge; only 7 received transitional care.
- Bowel function worsened in some patients after pediatric discharge.
Conclusions:
- A significant proportion of Hirschsprung patients face ongoing bowel issues.
- Better stratification for transitional care is needed.
- Clear pathways for post-discharge care are essential.
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