Patterns of Primary, Specialty, Urgent Care, and Emergency Department Care in Children with Inflammatory Bowel Diseases

OBJECTIVES: Pediatric patients with inflammatory bowel diseases (IBD) require treatment, monitoring, and health maintenance services. We described patterns of primary, specialty, emergency department (ED) and urgent care delivery, and explored patient- and system-related variables that impact ED/urgent care utilization. METHODS: We conducted a cross sectional survey of parents of children with IBD at a large tertiary children's hospital. RESULTS: 161 parents completed the survey (75% response). Mean patient age 13.9 years (51% male); 80% Crohn's, 16% ulcerative colitis, 4% IBD-unspecified. Mean disease duration 4 years (standard deviation (SD) 2.7). 30% had at least one other chronic disease, 31% had a history of IBD-related surgery. Parents were predominantly Caucasian (94%), well-educated (61% bachelor's degree/higher), part of a two-parent household (79%) living in a suburban setting (57%). 77% of patients had private insurance. In the past year, most children had 1-2 IBD-related office visits (54%) with their gastroenterology (GI) doctor and no IBD-related hospitalizations (79%). 88% (N = 141) had a primary care provider (PCP), and most (70%) saw their PCP 1-2 times. Even so, 86% (N = 139) received medical care from places other than their PCP or GI doctor; 27% in the ED and 45% at urgent care. Children of parents with less than a bachelor's degree, families that lived further from their GI doctor, and children who saw their PCP more often were more likely to utilize ED/urgent care. CONCLUSIONS: ED/urgent care utilization in pediatric patients with IBD was greater than expected, potentially contributing to fragmented, costly care and worse outcomes.