Inflamm Bowel Dis. 2024 May 3:izae087. doi: 10.1093/ibd/izae087. Online ahead of print.

Angharad Vernon-Roberts ¹, Patrick Chan ², Britt Christensen ³, Rachael Havrlant ⁴, Edward Giles ^5 6, Astrid-Jane Williams ^2 7

Author information

¹Department of Paediatrics, University of Otago, Christchurch, New Zealand.

²Department of Gastroenterology, Liverpool Hospital, Sydney, New South Wales, Australia.

³Department of Gastroenterology, Royal Melbourne Hospital, Melbourne, Victoria, Australia.

⁴Transition Care Network, Agency for Clinical Innovation, NSW Health, Sydney, New South Wales, Australia.

⁵Department of Paediatrics, Monash University, Melbourne, Victoria, Australia.

⁶Centre for Innate Immunity and Infectious Disease, Hudson Institute of Medical Research, Melbourne, Victoria, Australia.

⁷Faculty of Medicine, South Western Sydney Clinical School, University of New South Wales, Sydney, New South Wales, Australia.

Abstract

Background: The incidence of pediatric inflammatory bowel disease (IBD) is rising, and there is an increasing need to support adolescents when they transition to adult care. Evidence supports the use of a structured transition process but there is great variation across Australasia. The study aim was to develop evidence and expert opinion-based consensus statements to guide transitional care services in IBD.

Methods: A modified UCLA-RAND methodology was employed to develop consensus statements. An IBD expert steering committee was formed and a systematic literature review was conducted to guide the drafting of consensus statements. A multidisciplinary group was formed comprising 16 participants (clinicians, nurses, surgeons, psychologists), who anonymously voted on the appropriateness and necessity of the consensus statements using Likert scales (1 = lowest, 9 = highest) with a median ≥7 required for inclusion. Patient support groups, including direct input from young people with IBD, informed the final recommendations.

Results: Fourteen consensus statements were devised with key recommendations including use of a structured transition program and transition coordinator, mental health and transition readiness assessment, key adolescent discussion topics, allied health involvement, age for transition, and recommendations for clinical communication and handover, with individualized patient considerations. Each statement reached median ≥8 for appropriateness, and ≥7 for necessity, in the first voting round, and the results were discussed in an online meeting to refine statements.

Conclusions: A multidisciplinary group devised consensus statements to optimize pediatric to adult transitional care for adolescents with IBD. These guidelines should support improved and standardized delivery of IBD transitional care within Australasia.