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Is it "all in the bag?" Multidisciplinary perspectives on ostomy surgery in pediatric IBD across the ImproveCareNow
Jennie G David1,2, Jennifer Dotson1,2,3,4, Laura Mackner1,2,5
1Department of Pediatrics The Ohio State Wexner Medical Center Columbus Ohio USA.
Insights
Healthcare professionals find pediatric inflammatory bowel disease ostomy surgery complex, noting significant patient stigma and a need for improved multidisciplinary care. Enhanced support and systematic approaches are crucial for better outcomes.
Area of Science:
- Pediatric Gastroenterology
- Surgical Decision-Making
- Healthcare Professional Perceptions
Background:
- Pediatric inflammatory bowel disease (IBD) management involves complex decisions, including ostomy surgery.
- Multidisciplinary healthcare professionals (HCPs) face challenges in ostomy-related medical decision-making (MDM) for pediatric IBD patients.
Purpose of the Study:
- To investigate national multidisciplinary HCPs' perceptions of pediatric IBD ostomy surgery in the United States.
- To understand HCPs' views on patient/family ostomy perceptions, their own perspectives, and multidisciplinary collaboration.
Main Methods:
- A cross-sectional survey was administered to HCPs in pediatric IBD roles within the ImproveCareNow (ICN) Learning Health System.
- Data collected included demographics, and perspectives on ostomy perceptions, personal views, and multidisciplinary collaboration.
Main Results:
- Participants (n=69) reported that most patients/families view ostomies as a "failure" (86%) and have psychosocial concerns (97% body image).
- Significant ostomy-related stigma was reported by HCPs (81% on patient/family perceptions, 44% on personal perceptions).
- Multidisciplinary care was present in 54% of cases, with 70% reporting variability in collaboration quality/quantity.
Conclusions:
- Pediatric IBD ostomy surgery MDM is complex, highlighting significant psychosocial needs and ostomy-related stigma.
- There is a clear interest in multidisciplinary care, but current collaboration is variable.
- Future research should focus on systematic multidisciplinary care models to improve psychosocial and healthcare utilization outcomes.
Objectives:
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.
Methods:
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.
Results:
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.
Conclusion:
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.
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