A qualitative study exploring the diagnostic and treatment journeys of children and young people with gastroduodenal disorders of gut-brain interaction, their families, and the clinicians who care for them

BackgroundGastroduodenal disorders of gut-brain interaction (DGBI) are prevalent in the paediatric population. Diagnostic pathways and subsequent treatment management approaches for children and young people can be highly variable, leading to diverse patient and clinical experiences. This study explores the DGBI diagnostic experiences of children and their families and the perspectives of clinicians in the New Zealand context. MethodsSemi-structured interviews were conducted with 12 children with gastroduodenal DGBIs and their families and clinicians who care for children with DGBIs. Interviews were recorded, transcribed, and narratively analysed. ResultsFive children and family themes emerged: 1) how it all started, 2) the impacts symptoms had on child and family life, 3) their experiences with testing and investigations, 4) the perceptions and impacts of challenging clinical relationships, and 5) the uncertainness of trial and error treatments. Clinicians also identified five key themes: 1) navigating the complexity of presenting symptomology, 2) the challenging diagnostic investigation decision-making process, 3) navigating management and treatment approaches, 4) a lack of standardised clinical pathways, and 5) establishing therapeutic relationships with patients and families. ConclusionChildren, their families, and clinicians confirmed the clinical complexity of DGBIs, the challenges of diagnosis and management, and the stress this places on therapeutic relationships. Clearer diagnostic pathways and new investigations that could provide improved identification and discrimination of DGBIs are needed to minimise the treat-test repeat cycle of care and improve health outcomes.