P047 PARENT PERSPECTIVES ON COMPREHENSIVE CARE FOR CHILDREN WITH INFLAMATORY BOWEL DISEASES: BUILDING A CARE DELIVERY MODEL FROM THE FAMILY UP

Abstract

Abstract Background Patients with Inflammatory Bowel Diseases (IBD) require life-long management by gastroenterology (GI) and primary care providers (PCP). Guidelines exist outlining recommended healthcare services, but it is unclear which provider is responsible for which tasks, and what parents prefer. Aims To understand perceptions of healthcare quality and delivery for children with IBD, describe barriers to receiving comprehensive healthcare, and elicit preferences for how care would ideally be delivered. Methods Cross-sectional survey of parents of children ages 2–17 with IBD at a large, free-standing children’s hospital, recruited via an institutional research registry. Surveys assessed patient medical history, family demographics, perceptions of health care quality and delivery, barriers to primary and GI care, and preferences for care receipt. Results 217 parents were recruited, 214 consented, and 161 completed the survey (75% response). Mean patient age 14 years (SD 3); 51% male; 80% Crohn’s, 16% ulcerative colitis, and 4% indeterminate colitis. Most parents were Caucasian (94%), had a bachelor’s degree or higher (61%), and lived in a suburban setting (57%). Most had private insurance (43%) or private primary and public secondary insurance (34%). Most parents (N=149, 94%) thought the GI doctor was responsible for their child’s IBD care, and 8 (6%) reported shared responsibility by the GI doctor and PCP. 113 (71%) said their child’s PCP was responsible for primary care, 8 (5%) said GI doctor, and 37 (23%) said both. 95% of parents were confident in their GI doctor’s primary care knowledge, and 81% with their PCP’s IBD knowledge. 89% were satisfied with their communication with the PCP, and 98% were satisfied with their communication with the GI doctor. 53% did not know how well their PCP and GI doctors were communicating with each other. Only 4% of parents reported unmet healthcare needs, but those who did cited inadequate family support and mental health services. The greatest barriers to PCP care were lack of continuity with providers (22%) and scheduling (24%). The greatest barriers to GI care were scheduling (38%) and traveling to appointments (29%). Parent preferences for specific health care service delivery are found in Figure 1. Conclusions Parents of children with IBD are satisfied with provider knowledge and communication skills with them, though most are unaware how well their PCP and GI doctor are communicating with each other. Healthcare needs are being met for most patients in our cohort, but parents cite different barriers to primary vs. specialty care, and mental health services in particular are lacking. Parents seem to support co-management between their child’s PCP and GI provider. Understanding parent perspectives is essential to the development of family-centered healthcare delivery models for children with IBD.