Qualitative analysis of studies concerning quality of life in children and adults with anorectal malformations

INTRODUCTION: Anorectal malformations are relatively common congenital anomalies in pediatric surgery. After definitive surgery constipation, soiling, and fecal incontinence are frequently seen problems. Quality of life (QoL) can be influenced by these problems. In the last decades QoL has become an important aspect in the treatment and follow-up of patients with anorectal malformations. This has resulted in various reports concerning QoL. In order to deduce whether the drawn conclusions in the different studies are correct and can be used to adjust standard care for patients with ARM, a qualitative analysis of the studies was performed.

MATERIAL AND METHODS: A literature study was performed in PubMed, Psychinfo, Web of Science, and the Cochrane Library (240 hits). Thirty articles were used, following application of our inclusion criteria and in-depth analysis of the articles. A methodological qualitative analysis was also performed and QoL outcome assessed.

RESULTS: Six authors (20.0%) used validated QoL questionnaires. Four articles were longitudinal and had more than one measure moment. Eleven studies (36.7%) used only non-validated questionnaires, and eight studies (26.6%) used only validated questionnaires. Nineteen studies correlated fecal continence to QoL, and seven studies established no correlation. Three of these seven studies used validated QoL questionnaires. All twelve studies, which did establish a correlation, used non-validated QoL questionnaires.

CONCLUSIONS: Approximately 83% of the studies had not used validated QoL questionnaires. Further, conclusions concerning QoL were often based on functional outcomes, for example fecal incontinence. So far, longitudinal high quality research on QoL in this group has not been achieved.