Long-term functional outcome and quality of life in patients with high imperforate anus

• Published in: Journal of pediatric surgery 2010, Vol.45 (1), p.224-230
• Main Authors: Hashish, Mohamed S, Dawoud, Hamada H, Hirschl, Ronald B, Bruch, Steven W, El Batarny, Akram M, Mychaliska, George B, Drongowski, Robert A, Ehrlich, Peter F, Hassaballa, Sayed Z, El-Dosuky, Nagi I, Teitelbaum, Daniel H
• Format: Article
• Language: English
• Subjects: Abnormalities, Multiple - epidemiology; Age Factors; Anal Canal - surgery; Anorectal malformation; Anus, Imperforate - epidemiology; Anus, Imperforate - psychology; Anus, Imperforate - surgery; Child; Constipation; Constipation - epidemiology; Constipation - psychology; Constipation - surgery; Cross-Cultural Comparison; Defecation - physiology; Digestive System Surgical Procedures - methods; Egypt - epidemiology; Enema - methods; Humans; Imperforate anus; Incontinence; Laparoscopy - methods; Longitudinal Studies; Outcome Assessment (Health Care); Patient Satisfaction; Pediatrics; Quality of Life; Reoperation; Severity of Illness Index; Surgery; Surveys and Questionnaires; Treatment Outcome; United States - epidemiology
• ISSN: 0022-3468; 1531-5037
• DOI: 10.1016/j.jpedsurg.2009.10.041

Abstract Purpose Anorectal malformations (ARMs) are associated with a large number of functional sequale that may affect a child's long-term quality of life (QOL). The purposes of this study were to better quantify patient functional stooling outcome and to identify how these outcomes related to the QOL in patients with high imperforate anus. Methods Forty-eight patients from 2 children's hospitals underwent scoring of stooling after 4 years of life. Scoring consisted of a 13-item questionnaire to assess long-term stooling habits (score range: 0-30, worst to best). These results were then correlated with a QOL survey as judged by a parent or guardian. Result Mean (SD) age at survey was 6.5 (1.6) years. Comparison of QOL and clinical scoring showed no signficant difference between the 2 institutions ( P > .05). There was a direct correlation between the QOL and stooling score (Pearson r2 = 0.827; β coefficient = 24.7, P < .001). Interestingly, functional stooling scores worsened with increasing age (Pearson r2 = 0.318, P = .02). Patients with associated congenital anomalies had a high rate of poor QOL (44% in poor range; P = .001). Stooling scores decreased significantly with increasing severity/complexity of the ARM ( P = .001). Conclusion A large number of children experience functional stooling problems, and these were directly associated with poor QOL. In contrast to previous perceptions, our study showed that stooling patterns are perceived to worsen with age. This suggests that children with ARMs need long-term follow-up and counseling.