Limitations of Functional Scoring Systems in Predicting Long-term Quality of Life in Anorectal Malformations

A BSTRACT Introduction: Multiple functional scoring systems exist to evaluate bowel and urinary outcomes in patients with anorectal malformations (ARM). However, their correlation with patient-reported quality of life (QoL) remains uncertain. This study aimed to assess the predictive value of these functional scores in determining long-term QoL among adolescents and adults with ARM. Materials and Methods: We conducted a cross-sectional study including patients aged ≥12 years who had undergone definitive surgical correction for ARM, irrespective of age at operation. Functional outcomes were evaluated using the Kelly, Rintala, Holschneider, pediatric incontinence/constipation score (PICS), lower urinary tract symptoms, and Bowel function score (BFS) systems. QoL was assessed using a self-reported 1-10 numerical scale, where higher scores indicated better perceived well-being. Correlations between functional outcomes and QoL were analyzed statistically. Results: Twenty-three patients (17 females, 6 males) with a mean age of 15.96 ± 4.65 years were assessed. The majority (74%) had low-type ARM. The Kelly and BFS scores demonstrated the strongest correlation with each other ( P < 0.001). However, none of the functional scoring systems showed a significant correlation with patient-reported QoL. Conclusions: Functional scoring systems, while useful for objective outcome assessment, do not reliably predict long-term QoL in ARM survivors, particularly those with low malformations. Patient-reported QoL appears to be shaped by broader influences, including psychosocial adaptation, coping mechanisms, cultural perceptions, and response shift. These findings highlight the need for validated QoL instruments and multicenter studies incorporating both functional and psychosocial domains.