Living with Pediatric Coeliac Disease: Lessons for Health Service Delivery

Background: Coeliac Disease (CD) affects up to 1.4% of children worldwide, with a rising global incidence. A less typical clinical presentation and the need for a life-long gluten exclusion diet raise challenges for diagnosis, management, and healthcare delivery with considerable impacts for CD patients and families as well as clinical services.

Aims: To explore the lived experiences of caregivers of children with CD to identify barriers and enablers to diagnosis, referral, and treatment to inform a more streamlined service delivery model.

Methods: Semi-structured interviews with caregivers of children with CD diagnosed for at least one month with no significant co-morbidities. Interviews were thematically analyzed.

Results: Sixteen participants representing 12 family units were interviewed. Children with CD ranged in age from 3 to 18 years. Time from symptom onset to diagnosis varied from one month to > 10 years and symptoms were mainly atypical and non-specific. Six key themes were identified: the iterative diagnosis journey, restricted choices, child responsibility and autonomy, mental load (encompassing foodwork, emotional rollercoaster, and lack of trust), Google™ reigns for information, and where to from here?

Conclusion: There is a need to decentralize CD diagnosis and management to meet the increasing demand created by rising incidence. Participants highlighted the need for a more streamlined diagnosis pathway, increased training of health professionals, and access to age-appropriate resources. Efforts need to be made to advocate for increased community awareness. These insights will be used to reimagine and co-design a decentralized model of care for pediatric CD diagnosis and management in Queensland, Australia.