Agreement Between Patient- and Physician-completed Pediatric Ulcerative Colitis Activity Index Scores

Lee, Jessica J*; Colman, Ruben J*; Mitchell, Paul D; Atmadja, Melissa L*; Bousvaros, Athos*; Lightdale, Jenifer R*

Journal of Pediatric Gastroenterology & Nutrition: June 2011 - Volume 52 - Issue 6 - p 708–713
doi: 10.1097/MPG.0b013e3182099018
Original Articles: Gastroenterology

Objectives: Currently validated ulcerative colitis (UC) activity measures are physician based, but incorporate patient reports of symptoms. We aimed to assess whether patient-completed Pediatric UC Activity Index (PUCAI) scores are comparable to those of physician scores.

Patients and Methods: We performed a single-center prospective study to assess agreement between patient- and physician-completed PUCAI scores. Seventy patients with UC (ages 4–29) representative of all of the disease activity categories (inactive, mild, moderate, and severe) in the currently published physician-completed scoring system were recruited. Agreement was analyzed for PUCAI scores both as continuous and categorical measures. To ascertain validity, we compared both patient- and physician-completed PUCAI scores with the physician global assessment and serum inflammatory markers.

Results: Patient- and physician-completed PUCAI summary scores were identical 49% of the time, were different but within the minimal clinically important difference (MCID) of 20 points 48% of the time, and were at or beyond the MCID only 3% of the time. In general, patients reported higher mean disease severity on their questionnaires than did their physicians, with a mean difference in PUCAI scores of 3 ± 8 (95% confidence interval 2%–5%). A categorical comparison of the 2 sets of questionnaires using the disease activity groups demonstrated perfect agreement for 60 (86%) pairs (kappa coefficient 0.78; 95% confidence interval 0.65%–0.90%). Both patient- and physician-completed PUCAI scores also correlated well with the physician global assessment and serum inflammatory markers.

Conclusions: Our data indicate strong agreement between PUCAI scores obtained directly from patients and those completed by physicians. Hence, a patient-based PUCAI could complement existing instruments in both clinical and research settings.

*Center for Inflammatory Bowel Disease, Division of Gastroenterology and Nutrition, USA

Clinical Research Program, Biostatistics Core, Children's Hospital Boston, Harvard Medical School, Boston, MA, USA.

Received 21 July, 2010

Accepted 1 December, 2010

Address correspondence and reprint requests to Jessica J. Lee, MD, MMSc, Division of Gastroenterology and Nutrition, Children's Hospital Boston, 300 Longwood Ave, Boston, MA 02115 (e-mail: jessica.lee@childrens.harvard.edu).

Supplemental digital content is available for this article. Direct URL citations appear in the printed text, and links to the digital files are provided in the HTML text of this article on the journal's Web site (www.jpgn.org).

Crohn's and Colitis Foundation of America Research Fellowship Award supported J.J.L. during the conduct of this research, and Dutch Digestive Foundation supported R.J.C..

The authors report no conflicts of interest.

Copyright 2011 by ESPGHAN and NASPGHAN