Long-term disease-specific quality of life in children and adolescent patients with ARM

Background: The main aim of the present study was to investigate how fecal incontinence might influence different aspects of quality of life (QOL) in children and adolescents with anorectal malformations (ARMs). We considered both the influence of fecal incontinence at time 1 of the study and the influence of fecal incontinence at time 2 (4 years later) on QOL measured at time 2. Methods: A total of 175 parents from the Italian Parents' and Patients' Association for Anorectal Malformations completed a questionnaire about fecal incontinence in their children at time 1 of the study. Four years later, 97 of these parents completed the Hirschsprung Disease/Anorectal Malformation Quality of Life questionnaire. Patient ages ranged from 4 to 17 years. Quality of life areas from the Hirschsprung Disease/Anorectal Malformation Quality of Life questionnaire were considered as outcome variables in a hierarchical regression analyses where fecal incontinence at time 1 and at time 2 served as predictors. Results: The principal findings indicated that fecal incontinence at time 2 significantly predicted constipating diet, presence of diarrhea, urinary continence, social functioning, emotional functioning, body image, and physical symptoms, also when severity of the malformation was taken into account. Conclusions: It is extremely important that pediatric surgeons continue to promote effective bowel management programs and that they work with other specialists and support associations to offer emotional and psychological support to patients with ARM and their families. © 2012 Elsevier Inc. All rights reserved.