Disability in pediatric inflammatory bowel diseases: A systematic review and a single center experience.

OBJECTIVES: Toward development of a pediatric IBD disability index (PIDI), we aimed to review the literature on disability in pediatric inflammatory bowel disease (PIBD) and to estimate disability rates in a pediatric inception cohort. METHODS: A systematic review identified studies reporting disability in PIBD and in adult randomized controlled trials (RCTs) with disability as the primary outcome. In parallel, seven disability-related IMPACT-III items were retrieved at 4 and 12 months after diagnosis from a prospectively followed inception cohort of PIBD. Items were scored 0-100 (≤75 mild, ≤50 moderate, and ≤25 severe disability), supported by a validation sub-study. RESULTS: Thirteen pediatric studies were included of which 10 used the functional disability inventory, a generic disability tool not developed for PIBD. Any disability was found in 55% and 100% in the two studies that reported rates. Three adult RCTs used generic patient-reported measures of participation in daily activities and showed modest, inconsistent improvement in disability with heterogenous interventions. The inception cohort included 80 children, of whom 38% had any disability at 4 months and 10% had moderate-severe disability. These rates declined to 18% and 0% at 12 months, respectively. Dietary restrictions, sports participation, travel, and school functioning were the most affected domains. At 4-months, any degree of disability was higher in those with active disease (61%) versus inactive disease (17%, p < 0.001). CONCLUSIONS: Disability literature in PIBD is scarce and lacks a pediatric-specific instrument. Functional limitations were frequent and persisted in some children despite reaching clinical remission. These findings underscore the need for standardized disability assessment in PIBD.