Poster Presentation International Celiac Disease Symposium 2026

Improving diagnosis, equity and continuity of care for children with coeliac disease: an analysis informed by the Consolidated Framework for Implementation Research (#328)

Sasha L Mealing 1 2 , Ray Lang 1 2 , Annette McLaren-Kennedy 3 , Danielle Gallegos 4 , Nikhil Thapar 2
  1. University of Queensland , Brisbane, QLD, Australia
  2. Queensland Children's Hospital, Upper Mount Gravatt, QLD, Australia
  3. Gold Coast University Hospital, Gold Coast, QLD, Australia
  4. Queensland University of Technology, Brisbane, Queensland, Australia

Background
Coeliac disease (CD) is a lifelong immune-mediated condition requiring strict dietary gluten exclusion. Australian children and families report complex diagnostic journeys and substantial ongoing management burden, while international data demonstrate variability in diagnostic and follow-up practices.¹–⁴ These challenges highlight the need for models of care that support consistent, equitable and continuous management across all healthcare settings.

Aim
To explore current models of paediatric CD care, identify barriers and facilitators to best practice, and define the features required for an equitable, sustainable and decentralised model of care; and to assess the feasibility and functionality of a digital “passport” to support lifelong management.

Results
Four key design principles emerged. First, despite decentralised care, clinicians identified the need for a centralised, trusted and current source of information. Second, any model must be equitable and accessible across geographical regions, provider groups and levels of care, with endorsement from relevant professional, consumer and healthcare organisations. Third, sustainability requires long-term resourcing, streamlined implementation and interoperability with existing health-service systems. Finally, stakeholders consistently identified the need for improved communication and continuity as children move between primary, secondary and tertiary care. The digital passport concept was broadly viewed as a promising mechanism to support these functions, particularly by providing a shared source of information and improving continuity across settings. Discussion focused primarily on the communication, technical and implementation barriers that would need to be overcome for successful adoption.

Conclusion
Stakeholders across diverse healthcare settings identified consistent requirements for an improved model of paediatric CD care: trusted and standardised information, equitable access, interoperability, sustainable resourcing and continuity across healthcare settings. A sustainable, interoperable digital model was broadly supported as a feasible mechanism to improve access to consistent information, communication and continuity across the lifelong care pathway, with successful implementation dependent on overcoming identified technical and system-level barriers.

 

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