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Living with Pediatric Coeliac Disease: Lessons for Health Service Delivery
Danielle Gallegos1,2, Annette McLaren-Kennedy3, Ray Lang3
1Centre for Childhood Nutrition Research, Queensland University of Technology (QUT), Graham St, South Brisbane, 4101, Australia. danielle.gallegos@qut.edu.au.
Insights
Caregivers of children with coeliac disease (CD) face challenges in diagnosis and management due to atypical symptoms and information gaps. Streamlining care pathways and increasing health professional training are crucial for better pediatric CD support.
Area of Science:
- Pediatric gastroenterology
- Public health
- Patient advocacy
Background:
- Coeliac disease (CD) affects up to 1.4% of children globally, with increasing incidence.
- Atypical presentations and lifelong dietary management pose diagnostic and care challenges for pediatric CD patients and families.
- Current healthcare delivery models require optimization to meet rising demands and improve patient outcomes.
Purpose of the Study:
- To investigate the experiences of caregivers of children with CD.
- To identify barriers and enablers in the diagnosis, referral, and treatment processes for pediatric CD.
- To inform the development of a more efficient and effective service delivery model for pediatric CD.
Main Methods:
- Semi-structured interviews were conducted with caregivers of children diagnosed with CD for at least one month.
- Participants had children aged 3-18 years with no significant co-morbidities.
- Qualitative data were analyzed using thematic analysis to identify key experiences and themes.
Main Results:
- Sixteen caregivers from 12 families participated, with diagnosis delays ranging from one month to over 10 years.
- Symptoms were predominantly atypical and non-specific, complicating early identification.
- Key themes included the diagnostic journey, limited choices, child autonomy, caregiver mental load, reliance on online information, and future care needs.
Conclusions:
- Decentralizing coeliac disease diagnosis and management is essential due to rising incidence.
- A streamlined diagnostic pathway, enhanced health professional training, and accessible age-appropriate resources are urgently needed.
- Increased community awareness and co-designed, decentralized care models are vital for improving pediatric CD management, particularly in regions like Queensland, Australia.
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.
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