The long-term quality of life outcomes in adolescents with Hirschsprung disease
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In brief
In brief
Long-term study of 58 adolescent Hirschsprung disease patients shows general quality of life comparable to healthy controls, but disease-specific measures reveal significant impact on families. Nearly half of parents experience anxiety about their child's bowel function, with fecal incontinence strongly correlating with reduced quality of life.
Written by the GCMD Library team from the article.
Background
Postoperative outcomes for Hirschsprung disease (HD) remain variable, with many patients affected by constipation and/or fecal incontinence. The long-term impact upon quality of life (QoL) for HD patients is unclear. We measured long-term QoL outcomes in adolescents with HD using validated questionnaires.
Methods
Patients with HD, managed at a large tertiary pediatric institution between 1997 and 2004, were identified. Patients and/or their proxy completed validated questionnaires. Results were compared with published healthy population controls. Two questionnaires assessed QoL: Pediatric Quality of Life Inventory (PedsQL) and Fecal Incontinence and Constipation Quality of Life (FICQOL). Three measures assessed functional outcomes: Baylor Continence Scale, Cleveland Clinic Constipation Scoring System, and Vancouver Dysfunctional Elimination Symptom Survey.
Results
Interviews were completed for 58 (70% response rate) patients [M:F, 49:9; median age, 14.5 years (11.1–18.7)]. No significant differences were found in general QoL scores between patients and healthy controls (84.84 versus 81.49, p = 0.28). Disease-specific questionnaires revealed reduced QoL in patients and families, with 17% of parents reporting the bowel dysfunction stopped their child from socializing and 47% of parents experiencing some degree of anxiety/depression regarding their child's bowel condition. Fecal incontinence (r = −0.59, p