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Updated: Jan 12, 2026
Diagnosis of Hirschsprung's Disease by Immunostaining Rectal Suction Biopsies for Calretinin, S100 Protein and Protein Gene Product 9.5
Published on: April 26, 2019
Bowel function and quality of life in adolescents with Hirschsprung Disease
Karlsen Remi Andre1, Hoel Anders Telle2, Karaji Negin3
1Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
Background:
Functional bowel problems are common in children following surgery for Hirschsprung Disease (HD), but there is limited information regarding bowel function and its potential impact on quality of life (QoL) in HD adolescents. Therefore, this study investigates bowel function and QoL within a national cohort of HD adolescents.
Methods And Patients:
This cross-sectional study invited all Norwegian HD adolescents, 12-18 years. Data were gathered from electronic patient records and through questionnaires; Bowel Function Score (BFS), PedsQL Gastrointestinal Symptoms Module (PedsQL-GSM), and PedsQL Generic Core Scale (PedsQL-GCS). QoL data from patients and controls were compared (PedsQL-GSM: 513 controls; PedsQL-GCS 425 controls).
Results:
77/84 (92 %) adolescents, median 14.0 (12.0-18.4) years, participated. Fifty-nine (77 %) were boys, and eight (10 %) were syndromic/neurologically impaired. Rectosigmoid aganglionosis affected 60 (78 %). A pull-through procedure was performed on 73; 49 underwent endorectal pull-through, 12 the Swenson procedure, and 12 the Duhamel procedure. Nineteen (25 %) utilized regular enemas, and nine (12 %) had a stoma. Among those not using regular enemas or had a stoma, 30 (39 %) reported BFS Score ≥17. Total PedsQL-GSM score was significantly lower compared to controls (83.2 vs. 88.6, p < 0.01). "Stomach pain" and "gas and bloating" were most common symptoms. Patients reported generic QoL comparable to controls. Gastrointestinal symptoms correlated with reduced generic QoL.
Conclusion:
Persistent functional bowel problems are common among HD adolescents, yet their generic QoL remains satisfactory. Given that bowel issues are associated with lower generic QoL, effective management of bowel problems appears essential for maintaining overall good QoL.
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