# Examining the pathway to specialist care for children and young people with late presentation of chronic kidney disease in the UK: a qualitative study

## TL;DR

This study explores why some children in the UK are diagnosed with chronic kidney disease late, focusing on their journey to specialist care.

## Contribution

The study introduces a typology of symptom appraisal and help-seeking behaviors that could inform interventions to improve early CKD detection.

## Key findings

- Families often cycled through primary care before specialist referral, with long appraisal intervals.
- Secondary care referral consistently led to nephrology care involvement.
- Not all late presentations could be avoided, suggesting complex factors are at play.

## Abstract

Detecting chronic kidney disease (CKD) early can provide opportunities to optimise native kidney function, prevent further decline and plan for timely kidney transplantation if required. Understanding how children are found to have kidney disease and present to specialist kidney care may help tailor interventions to support a timelier diagnosis. The aim of this study was to examine the pathway to specialist care for UK children who present late to nephrology with advanced CKD (requiring kidney replacement therapy within 90 days of first nephrology review) to determine whether there are modifiable aspects to presentation and diagnosis.

Semi-structured, in-depth qualitative study. A topic guide based on the theoretical framework of health behaviour by Scott et al, The Model of Pathways to Treatment, was developed to capture differences in symptom appraisal and help-seeking before reaching nephrology care.

UK paediatric nephrology units (n=4) between December 2017 and December 2020.

Children and young people who experienced a late presentation of CKD and their parents/carers.

Twenty-two participants participated across 19 interviews: seven children (two male, median age 16, IQR 13–17.5 years) and 15 parents. A typology of presentation to healthcare was identified: commonly, families reported repeated cycles of primary care help-seeking before onward referral to specialist care, although long appraisal intervals were also noted. In all cases, secondary care referral led to onward nephrology care involvement. Narratives highlighted that not all cases of late presentation could be avoided.

A typology of symptom appraisal and help-seeking can inform interventions to improve CKD detection. Interventions that support symptom appraisal and consideration of targeted CKD testing in children may help reduce appraisal and help-seeking intervals, respectively.