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.

Why was this study done?

Pediatric patients living with Inflammatory Bowel Disease (IBD) may have surgery as part of their IBD treatment. Ostomy surgery is one type of surgery patients with IBD may have where the intestine is surgically brought to the surface of the belly and a patient wears an ostomy pouch on top to collect the waste output. Previous research has shown us that thinking about, deciding about, and having surgery can be complex for patients and families. We also know ostomy surgery is associated with stigma (negative thoughts/beliefs) and this may impact how healthcare professionals, patients, and family members think about ostomy surgery in pediatric IBD.

The aim of this study was to understand 1) how multidisciplinary healthcare professionals (GIs, surgeons, wound ostomy nurses, psychologists) think about ostomy surgery in pediatric IBD, and 2) how centers currently coordinate and collaborate to provide multidisciplinary care for IBD patients considering and having ostomy surgery.

How was the study designed?

Sixty-nine (69) healthcare professionals at thirty (30) U.S. based ImproveCareNow centers completed a one-time, electronic survey about ostomy surgery in pediatric IBD.

What were the results?

The study found that most healthcare professionals (81%) think that patients/families have moderate to significant stigma about ostomy surgery. The study also found that nearly half (44%) of healthcare professionals endorsed their own negative perceptions about ostomies. Nearly all healthcare professionals (97%) identified that pediatric ostomy surgery patients have unique psychosocial needs, such as body image.

Over half of the study participants (54%) reported some degree of multidisciplinary care for pediatric IBD surgery at their centers. Most (70%) healthcare professionals also reported variability in the amount or quality of multidisciplinary care.

What does this mean for patients, families and clinicians?

Considering and undergoing ostomy surgery in pediatric IBD can be complicated for patients, family members, and healthcare professionals. Currently, there is variability of standardized, high quality multidisciplinary care for pediatric IBD patients considering surgery within the ImproveCareNow network.

This study has several key takeaways, including:

💚 Healthcare professionals’ perception of family stigma as well as healthcare professionals reporting their own stigma about ostomy surgery; this may increase stigma/negative perceptions about ostomy surgery and make it more challenging to have open, calm, and neutral discussions about this surgical option.

💙 This study has highlighted the importance of psychosocial care for patients considering and undergoing ostomy surgery, and how psychosocial clinicians (psychologists, social workers) can support patients/families throughout the medical decision-making and surgical processes.

💚 Lastly, this study highlighted the current variability of standardized, high quality multidisciplinary care for pediatric IBD patients considering surgery with the ImproveCareNow network and is a call to action to improve access to this care.

Resources (to learn more):

Study authors

David, Jennie G., Dotson, Jennifer, Mackner, Laura, ImproveCareNow Learning Health System

Study stats

This study was published in January 2024. You can locate it on our website and online in JPGN Reports

  • Study citation: David JG, Dotson J, Mackner L. Is it “all in the bag?” Multidisciplinary perspectives on ostomy surgery in pediatric IBD across the ImproveCareNow network. JPGN Rep. 2024;1‐9. doi:10.1002/jpr3.12044
  • Study sharing: This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial‐NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.

🔎 This ICN Research Explained was prepared by: Jennie G. David, PhD, Pediatric Psychologist, Nationwide Children's Hospital and Megan Gale, Parent, ICN Research Committee
We believe that in order to truly outsmart IBD, the questions we ask and the answers we find must be generated by and be useful to the people whose lives they will impact – patients and their families. ImproveCareNow (ICN) research is prioritized based on what matters most to patients and parents, and we are committed to sharing our results so everyone can understand and take advantage of what’s been learned. The ICN Research Committee has teamed up with patients and parents/caregivers to create and share accessible summaries of completed research called ICN Research Explained
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❣️ Psychosocial health is an important part of taking care of the whole you, and it is important to find reputable and personalized information. If you have questions about your psychosocial health, please reach out to your GI team and ask if there are any psychosocial resources available to you/your family. You can also learn more about how to find a psychosocial clinician by reviewing this resource

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💚 Join the Patient Advisory Council (patients with IBD who are 14+)
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