Is it "all in the bag?"Multidisciplinary perspectives on ostomy surgery in pediatric IBD across the ImproveCareNow network.

Abstract

Pediatric inflammatory bowel disease (IBD) is a chronic illness with various treatments, including ostomy surgery. Ostomy-related medical decision-making (MDM) is complex for multidisciplinary healthcare professionals (HCPs). This study sought to understand national multidisciplinary HCPs' perceptions about pediatric IBD ostomy surgery in the United States. This cross-sectional REDCap survey recruited HCPs in pediatric IBD HCP roles from the ImproveCareNow (ICN) Learning Health System. The survey gathered data on, (1) demographics, (2) participants'perspectives on patients/families'ostomy perceptions,(3) participants'own perspectives on ostomies, and (4) participants'perspectives on multidisciplinary collaboration in ostomy surgery. Participants (n = 69, across n = 30 American ICN sites) were 84% White, 62% female, and 54% gastroenterologists. In reflecting on patients/families'perceptions, participants endorsed most (86%) view ostomies as a "failure," various psychosocial concerns (e.g., 97% endorsed body image concerns), and most (81%) have moderate to significant stigma about ostomies. In reflecting on their own perceptions, nearly half (44%) endorsed some to moderate stigma about ostomies and felt ostomy discussions were difficult when families had negative perceptions (88%). Over half (54%) endorsed currently having multidisciplinary care for pediatric IBD surgery. Most (70%) endorsed variability in the amount and/or quality of multidisciplinary collaboration. MDM related to pediatric IBD ostomy surgery presents nuanced clinical complexities for HCPs. This work underscores interest in multidisciplinary care, notable ostomy-related psychosocial needs, and ostomy-related stigma. Future work should develop systematic approaches to multidisciplinary pediatric IBD ostomy care, bolster psychosocial support, and evaluate how systematic care may impact psychosocial, and healthcare utilization outcomes.