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Bowel Function Score in Long-Term Follow-Up for Children with Hirschsprung Disease: OASIS-Holistic Care in
Judith Lindert1,2, Anders Telle Hoel3, Eberhard Schmiedeke4
1Department of Paediatric Surgery, University Hospital Rostock, 18057 Rostock, Germany.
Insights
Assessing bowel function in Hirschsprung disease (HD) is challenging due to varied scoring methods. The OASIS-Holistic Care group identified the need for a universal, validated score, suggesting the Rintala Score for current standardized assessment.
Area of Science:
- Pediatric Surgery
- Gastroenterology
- Clinical Outcomes Research
Background:
- Assessing bowel function in Hirschsprung disease (HD) lacks standardized methodology, hindering reliable comparisons.
- Multiple bowel function scores are utilized, leading to inconsistencies in patient evaluation.
- The OASIS-Holistic Care in Hirschsprung Disease Network Group identified this critical gap in clinical practice.
Purpose of the Study:
- To evaluate the utility of commonly used bowel function scores in patients with Hirschsprung disease.
- To define the characteristics of an ideal bowel function assessment score for HD patients.
- To recommend a standardized score for current clinical use.
Main Methods:
- A scoping review of existing bowel function scores was conducted.
- An expert group consensus was achieved among network members.
- Evaluation focused on score comprehensiveness, validation, and applicability to HD management.
Main Results:
- The ideal comprehensive and validated score for Hirschsprung disease patients does not currently exist.
- Existing scores are insufficient for reliable, worldwide comparison of bowel function and continence.
- The Rintala Score is recommended for standardized, objective assessment in the interim.
Conclusions:
- A universally accepted, validated bowel function score for Hirschsprung disease remains a future goal.
- Standardized assessment is crucial for comparable data and improved patient care.
- Future developments may include patient-reported outcomes and automated data extraction tools.
Introduction:
The assessment of bowel function in patients with Hirschsprung disease (HD) remains controversial, as several different bowel function scores are used in the literature and are therefore not suitable for reliable comparison. Conference Section: The OASIS-Holistic Care in Hirschsprung Disease Network Group addressed this issue and evaluated the most commonly used scores for their utility in HD patients. Scoping Review and Expert Group Consensus were performed. It was agreed that the ideal score for patients with Hirschsprung disease should be a comprehensive, validated score that allows reliable assessment of bowel function and continence, depicts changes according to management and natural history, and quantifies baseline parameters. This score should also enable comparisons of bowel function in patients born with HD worldwide.
Concluding Remarks:
The OASIS-Holistic Care in Hirschsprung Disease Network Group agreed that this ideal score does not yet exist and is therefore a future goal of the group. Meanwhile, clinicians should use a score for comparable, standardized, objective assessment, and the Rintala Score is suggested. Future developments may also lead to easily accessible patient-reported outcome measures and semi-automated dashboards that allow automated data extraction from electronic health records.
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