Abstract
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: One hundred sixty-one parents completed the survey (75% response). Mean patient age 13.9 years (51% boys); 80% Crohn disease, 16% ulcerative colitis, 4% IBD-unspecified. Mean disease duration 4 years (standard deviation [SD] 2.7). Thirty percent had at least 1 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 2-parent household (79%) living in a suburban setting (57%). Seventy-seven percent of patients had private insurance. In the past year, most children had 1 to 2 IBD-related office visits (54%) with their gastroenterology (GI) doctor and no IBD-related hospitalizations (79%). Eighty-eight percent (N = 141) had a primary care provider (PCP), and most (70%) saw their PCP 1 to 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.