Patient-reported Outcomes of Children With an Anorectal Malformation

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OBJECTIVE: We aimed to study the impact of anorectal malformation (ARM) type and sacral ratio on continence outcomes in children. We secondarily aimed to compare continence outcomes by age group and determine quality of life (QoL) with different bowel regimens. SUMMARY BACKGROUND DATA: Children with ARM experience dysfunctional stooling into adulthood. Little is known about how ARM type, sacral ratio, age, and bowel regimen affect continence and QoL. METHODS: We administered validated assessments of stooling habits and QoL to children aged 2-19 years with ARM at 2 tertiary hospitals. Sacral ratio as a determinant of sacral hypodevelopment was defined as normal (≥0.7), moderate (0.4-0.0.69), or severe (≤0.39). Children not on an enema program were compared with those on an enema program to identify factors associated with achieving voluntary bowel movements, defined as continence. All children were compared with identify factors associated with QoL. RESULTS: Of 910 patients, half (52.8%) had mild sacral hypodevelopment. In patients not receiving enemas managed solely at study hospitals, most were continent (69.2%). There were no differences in continence demonstrated by sacral ratio; 79.4% of those who were continent had normal/moderate sacral hypodevelopment and mild ARM.Continence improved with age (50% ≤6 y old, 69.8% 6-12 y old, 82.1% >12 y old; P <0.001). Those on enemas and soiling had a QoL 19.6 points lower than those soiling on laxatives, and 20.7 points lower than those who were clean on enemas or continent with voluntary bowel movements without the need for enemas. CONCLUSIONS: In patients on laxatives, the type of malformation, but not sacral ratio, is associated with continence in patients with ARM. Continence improves with age; those on enemas with soiling have a worse QoL.

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