Disability in pediatric inflammatory bowel diseases: A systematic review and a single center experience
Reut Rappaport, Ouriel Hannaux, Gili Focht, Liron Marcovitch, Elana Gotkine, Ohad Atia, Esther Orlanski‐Meyer, Raffi Lev‐Tzion, Oren Ledder, Dotan Yogev, Eileen Crowley, Anthony Otley, Anne M. Griffiths, Dan TurnerAbstract
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.