Key stakeholders’ perspectives on the development of an early dietary phosphate self-management strategy for children and young people with chronic kidney disease stages 1-3: A mixed-methods study

Abstract

Background: Chronic kidney disease (CKD), classified as stages 1-5, costs the NHS an estimated £1.44-1.45 billion annually, with the cost of provision predominantly in dialysis services when milder CKD progresses to stage 5. Delaying disease progression and the commencement of dialysis, is desirable. CKD alters phosphate metabolism, which is strongly associated with a rise in fibroblast growth factor 23 (FGF-23) and disease progression. The provision of an early dietary phosphate self-management (EPSM) strategy may reduce FGF-23 levels and delay disease progression. Purpose: To explore the perspectives of children and young people (CYP), parents and key healthcare professionals (HCPs) towards the development of an EPSM strategy for CYP with CKD 1-3, within a managed paediatric renal network. Methodology: This three-phase study used an exploratory QUALITATIVE-quantitative mixed-methods research (MMR) design. A systematic review informed the development of a topic guide for qualitative semi-structured interviews (n=17) with CYP, parents and HCP (n=21). Interpretive description (ID) provided the qualitative methodology. The co-constructed themes developed from the qualitative interviews informed the first round of the modified online Delphi survey. Findings: Integration of the findings produced 3 novel MMR themes, emphasising the need for (1) a new paradigm of early dietary intervention to promote kidney health; to be (2) offered by the paediatric renal dietitian as part of an early engagement diagnosis package; and (3) accessible culinary medicine workshops, providing education, social networking, and upskilling to address the practical prerequisites of the strategy. Recommendations: The testing and implementation of an EPSM, and an action plan to address the challenges and enablers to implementing the strategy. Conclusion: This MMR produced a collective agreement and some early modelling on the operationalisation of an EPSM strategy. The findings will facilitate developments in the regional paediatric nephrology network, as well as informing national and international policy to improve health outcomes, delay disease progression, and reduce healthcare utilisation and costs