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 (TM) 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.