Diagnosis Changes in Pediatric IBD: Data From the Improvecarenow Registry

Background The change in subclassification of inflammatory bowel diseases ( IBD ) among patients with Crohn's (CD), ulcerative colitis (UC), and IBD -unclassified ( IBD -u) has previously been described in subpopulations of adult and pediatric patients. To date, no large, multinational registries have described characteristics of pediatric patients who change diagnosis . Methods We used the largest (27,628 individual patients for this study) prospective registry in the world for pediatric patients with IBD , ImproveCareNow ^R (ICN) to characterize those who change diagnosis . Diagnosis in the ICN registry is based on the Paris classification. Results 7.52% of pediatric patients had any change in diagnosis ; 5.19% of patients experienced a change in diagnosis after the initial 3 visits (Table 1). Those who start with a diagnosis of Crohn's are more likely to change , as compared with starting diagnoses of ulcerative colitis or IBD -u (p < 0.05). A majority of changes involve a diagnosis of IBD -u (75.8%, Figure 1). Among those who change diagnoses , those with initial diagnoses of Crohn's or IBD -u are more likely to have a BMI Z-score of less than -2, as compared to those with initial diagnosis of UC (p < 0.05). Patients with initial diagnosis of Crohn's who changed after 3 visits were less likely to have ileocolonic extent, penetrating or stricturing phenotype, or perianal disease documented (p < 0.05). Signs of initial miscoding occurred in less than 0.3% of patients. Figure 1. Open in new tab Download slide Start-End diagnosis patterns for those who change diagnosis after 3 visits. Figure 1. Open in new tab Download slide Start-End diagnosis patterns for those who change diagnosis after 3 visits. Discussion This is the first reported use of a large prospective pediatric registry to investigate diagnosis changes within IBD . Registration diagnosis of Crohn's appears to have more clinically impactful findings than those with UC or IBD -u. A majority of all changes involved a diagnosis of IBD -unclassified. Further investigation of diagnosis changes across time and modeling will supplement our understanding of clinical factors predictive of change .