Abstract
Objectives: Clinical symptom evaluation for children with inflammatory bowel disease (IBD) is typically done using composite tools: the Pediatric Crohn's Disease Activity Index (PCDAI) and Pediatric Ulcerative Colitis Activity Index (PUCAI). Both rely on clinician interpretation of child or parent symptom recall. No universal self-report tool has yet been developed for children with IBD to assess and report their symptoms. The research objective was to develop a self-report tool that produced information congruent with that obtained by clinicians using the PUCAI or PCDAI. Methods: A children's symptom self-report tool (IBDnow) was developed with picture and text Likert symptom scales. The clinician and child completed their reports during the same outpatient consultation. Agreement levels were calculated at the individual level (identical child and clinician answers), category level (symptom severity), and aggregate level (cohort scores). Internal consistency was measured with Cronbach alpha. Results: One hundred children from Christchurch (New Zealand) (n = 65), and Sydney (Australia) (n = 35) completed the study (Crohn's Disease (CD):88, ulcerative colitis (UC):12), mean age 13.9 years (+/- 3.6). Mean individual agreement was 0.76 (+/- 0.19). Category severity had very good or good inter-rater reliability for 5 of the 7 symptom scales and overall severity agreement of 76%. Aggregate mean scores were significantly different between clinicians (14.9, +/- 18.8), and participants (21.6, +/- 19.4), (P <0.005, confidence interval -9.0, -4.4), but 60 pairs had scores within a 10% margin. Cronbach alpha was 0.74. Conclusions: This self-report tool had good proportionate agreement between raters, and good crude agreement for symptom categories. Assigning PUCAI or PCDAI scores caused inter-rater discrepancies to be misleadingly magnified. Pediatric gastroenterologists may consider utilizing IBDnow to elicit symptom self-reports from children with IBD to enable them to communicate meaningful information on their ongoing symptom burden. This would be a positive step in helping children feel included in clinical encounters and promoting self-management, at the same time producing valid, subjective symptom recall.