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Persistent Soiling Affects Quality of Life in Children With Hirschsprung's Disease
Lucile Espeso1, Audrey Coutable2, Valérie Flaum3
1Department of Pediatric Gastro-enterology, University Hospital, Bordeaux.
Insights
Soiling issues significantly impact the quality of life (QOL) for children with Hirschsprung
Area of Science:
- Pediatric Surgery
- Gastroenterology
- Quality of Life Research
Background:
- Hirschsprung's disease (HD) is a congenital condition affecting the large intestine.
- Long-term outcomes and quality of life (QOL) in pediatric patients with HD require ongoing evaluation.
Purpose of the Study:
- To assess the quality of life (QOL) in children and adolescents diagnosed with Hirschsprung's disease (HD).
- To identify factors associated with QOL in HD patients.
Main Methods:
- A multicentric study included 63 pediatric patients (6-18 years) with HD.
- Quality of life was measured using the Health Utilities Index (HAQL) questionnaires, completed by patients and parents.
- Data were correlated with disease characteristics, nutritional status, and functional scores.
Main Results:
- Only 50-68% of patients achieved satisfactory bowel movements; 55-70% experienced soiling issues.
- Lower QOL scores were observed in patients with soiling, particularly concerning general well-being and diurnal fecal continence.
- Multivariate analysis identified soiling as the sole significant factor negatively impacting QOL (P=0.03).
Conclusions:
- Soiling is a prevalent complication in children treated for HD, substantially diminishing their QOL.
- Prioritizing the assessment and management of soiling is crucial for improving the long-term QOL of HD patients.
Objective:
This multicentric study aimed to evaluate the quality of life (QOL) in children with Hirschsprung's disease (HD).
Methods:
HD patients aged from 6 to 18 years and followed-up in 2 French pediatric surgery centers were included in this study. QOL was assessed using the HAQL questionnaires according to age (6-11 and 12-18), filled by patients and their parents (proxy reports) and correlated with initial disease characteristics, nutritional status, and functional score of Krickenbeck.
Results:
Sixty-three patients were included. The acquisition of satisfactory voluntary bowel movements was found in only 50% of the 6 to 11 years old and 68% of the teenagers. Seventy percentage of the children and 55% of teenagers had soiling issues. The overall HAQLproxy6--11 score was 528/700; best scores were found for "fecal continence" (94/100), "social functioning" (94/100), and "urinary continence" (92/100) whereas the worst scores were for "general well-being" (64/100) and "diurnal fecal continence" (58/100). The overall HAQLproxy12--16 score was 607/700; best scores were for "urinary continence" (96/100) and "social functioning" (93/100). In a multivariate analysis, soiling was the only factor significantly associated with low QOL (P = 0.03).
Conclusions:
Soiling remains frequent in children operated on for HD and negatively affects their QOL. Assessment and treatment of soiling should be the priority for medical teams in the follow-up of these children.
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