Why do children with chronic kidney disease present late to specialist services?

Student thesis: Doctoral ThesisDoctor of Philosophy (PhD)


Chronic Kidney Disease (CKD) and progression to kidney failure in childhood has significant implications for health and survival. If detected early, opportunities exist to slow disease progression and prepare for pre-emptive kidney transplantation. In the UK however, many children who develop kidney failure first present to a nephrologist when their kidney function is severely reduced. The reasons for this are unclear. This thesis aimed to investigate the problem of late presentation of childhood CKD: to examine pathways to care, identify risk factors, and investigate predictors of severe CKD (stages 4 and 5 and/or kidney replacement therapy requirement) which could serve as targets for intervention.

A qualitative in-depth interview study with late presenting children and their parents examined experiences of the pathway to specialist care. Analysis of UK registry data investigated whether deprivation or geographic location was associated with late presentation, and to what degree these factors explained differences in pre-emptive kidney transplantation access. Analysis of primary care data examined whether consultation patterns could identify children who subsequently developed severe CKD.

There was no association between geographic location or socioeconomic deprivation and late presentation, although higher odds of pre-emptive transplantation were seen with lower deprivation. Late presenting families frequently described late diagnosis of CKD, with symptoms manifest but ‘hidden in plain sight’. Appraisal was hampered by a lack of knowledge and context for kidney disease. Long appraisal and diagnostic intervals may serve as targets for intervention. Compared to matched controls, several symptoms were predictive of severe CKD in the primary care record including growth concerns, vomiting, and oedema; however, the positive predictive values of individual symptoms were low.

Late presentation of childhood CKD is multifactorial. Interventions that increase societal knowledge and facilitate parental appraisal, and targeted screening of high-risk individuals based on demographics, symptoms or clinical features may support timelier identification.
Date of Award12 May 2022
Original languageEnglish
Awarding Institution
  • The University of Bristol
SupervisorFergus J Caskey (Supervisor), Yoav Ben-Shlomo (Supervisor) & Amanda L Owen-Smith (Supervisor)

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