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Dan Turner, Jeffrey Hyams, James Markowitz, Trudy Lerer, David R. Mack, Jonathan Evans, Marian Pfefferkorn, Joel Rosh, Marsha Kay, Wallace Crandall, David Keljo, Anthony R. Otley, Subra Kugathasan, Ryan Carvalho, Maria Oliva-Hemker, Christine Langton, Petar Mamula, Athos Bousvaros, Neal LeLeiko, Anne M. Griffiths, Pediatric IBD Collaborative Research Group, Appraisal of the Pediatric Ulcerative Colitis Activity Index (PUCAI), Inflammatory Bowel Diseases, Volume 15, Issue 8, 1 August 2009, Pages 1218–1223, https://doi.org/10.1002/ibd.20867
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We evaluated the psychometric performance of the Pediatric Ulcerative Colitis Activity Index (PUCAI) in a real-life cohort from the Pediatric IBD Collaborative Research Group.
Two consecutive visits of 215 children with ulcerative colitis (UC) were included (mean age 11.2 ± 3.6 years; 112 (52%) males; 63 (29%) newly diagnosed and the others after disease duration of 24 ± 15.6 months). Validity was assessed using several constructs of disease activity. Distributional and anchor-based strategies were used to assess the responsiveness of the PUCAI to change over time following treatment.
Reflecting feasibility, 97.6% of 770 eligible registry visits had a completed PUCAI score versus only 47.6% for a contemporaneously collected Pediatric Crohn's Disease Activity Index (odds ratio = 45.8, 95% confidence interval [CI] 28.6–73.5) obtained for children with Crohn's disease accessioned into the same database. The PUCAI score was significantly higher in patients requiring escalation of medical therapy (45 points [interquartile range, IQR, 30–60]) versus those who did not, (0 points [IQR 0–10]; P < 0.001), and was highly correlated with physician's global assessment of disease activity (r = 0.9, P < 0.001). The best cutoff to differentiate remission from active disease was 10 points (area under receiver operating characteristic curve [AUC] 0.94; 95% CI 0.90–0.97). Test–retest reliability was excellent (intraclass correlation coefficient = 0.89; 95% CI 0.84–0.92, P < 0.001) as well as responsiveness to change (AUC 0.96 [0.92–0.99]; standardized response mean 2.66).
This study on real-life, prospectively obtained data confirms that the PUCAI is highly feasible by virtue of the noninvasiveness, valid, and responsive index. The PUCAI can be used as a primary outcome measure to reflect disease activity in pediatric UC.