Affiliation:
1. Department of Pediatrics The Ohio State Wexner Medical Center Columbus Ohio USA
2. Nationwide Children's Hospital Columbus Ohio USA
3. Division of Pediatric Gastroenterology, Hepatology and Nutrition, Nationwide Children's Hospital Columbus Ohio USA
4. Center for Child Health Equity and Outcomes Research, Abigail Wexner Research Institute at Nationwide Children's Hospital Columbus Ohio USA
5. Center for Biobehavioral Health, Nationwide Children's Hospital Columbus Ohio USA
Abstract
AbstractObjectivesPediatric 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.MethodsThis 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.ResultsParticipants (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.ConclusionMDM 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.