Aim: Most paediatric surgeons regard themselves as crucial and responsible for the follow-up of patients with anorectal malformations (ARM) and Hirschsprung's disease (HD). In this study, we explored to what extent paediatric gastroenterologists (PG) want to be involved in the care, if they experienced any knowledge gaps, and how they preferred to increase their knowledge.
Methods: All Norwegian paediatric departments received a questionnaire covering different aspects of follow-up of patients with ARM and HD. One PG was asked to answer on behalf of the department.
Results: 13/18 (72%) departments answered, 6/6 (100%) university- and 7/12 (58%) regional hospitals. The PG strongly disagreed that paediatric surgeons should have main responsibility for the follow-up on HD and ARM patients. The PG regarded the information provided by paediatric surgeons on main diagnosis, associated anomalies and recommendations for paediatric follow-up as insufficient. The PG listed surgical treatment, bowel management and long-term outcomes as knowledge gaps, and preferred national paediatric guidelines and paediatric meetings as sources to increase knowledge.
Conclusion: PG want more involvement in the follow-up of ARM and HD patients. To increase their knowledge, they recommend improved information from paediatric surgeons, national guidelines and a focus on ARM and HD at national paediatric meetings.
Keywords: Hirschsprung's disease; anorectal malformation; congenital disease; follow‐up; transition.
© 2025 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.