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

Abstract

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. We conducted a cross sectional survey of parents of children with IBD at a large tertiary children's hospital. 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. ED/urgent care utilization in pediatric patients with IBD was greater than expected, potentially contributing to fragmented, costly care and worse outcomes.