An exploration of the perspective of children, parents and key healthcare professionals towards the development of an early dietary phosphate self-management strategy to delay disease progression in children with Chronic Kidney Disease (CKD) stage 1-3, within a manged paediatric renal
What we are doing:
A three-phase mixed-methods study involves:
- phase one, a mixed studies systematic review with a narrative synthesis which has informed
- the qualitative semi-structured interview with children and young people, parents and healthcare professionals (n=21) in phase two. The themes identify from the interviews have informed the
- modified online Delphi survey with parents and healthcare professionals (n=30) in phase three.
The study seeks to explore the views of stakeholders, and reach consensus on the key issues that need to be considered when developing and delivering of an early dietary phosphate self-management strategy for children with CKD 1-3.
Why we are doing it:
Chronic kidney disease is one of the most expensive diseases treated by the NHS, with much of the cost taken up in the provision of dialysis services when milder CKD progresses to stage 5. The global increase in processed foods has significantly increased the consumption of inorganic phosphates. Elevated levels of the Fibroblast Growth Factor-23 (FGF-23) hormone, the earliest biomarker of abnormal phosphate control, directly correlates to disease progression. Educating children with CKD and their family about inorganic dietary phosphate in preservatives, may positively impact early phosphate metabolism, delaying disease progression.
What the benefits will be:
The provision of an early dietary phosphate self-management strategy to children with CKD stage 1-3 may delay disease progression and the associated complications of advancing Chronic Kidney Disease. Thus, delaying the transition to dialysis and transplantation, and improving growth and cardiac health. This study will inform developments in local, national and international policy, to improve early phosphate self-management, which may improve health outcomes and reduce healthcare utilisation and costs.
Who we are working with:
We are working with the following groups:
- Children’s Renal & Urology Unit, Nottingham Children’s Hospital, Nottingham, UK
- University of Nottingham, UK
- East Midlands, East of England and South Yorkshire (EMEESY) Paediatric Renal Network