Evidence map›Paper›PMID 41213685›Full record

ArticleBMJ open2025

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

Lucy Plumb, Manish Sinha, Matthew J Ridd, Fergus Caskey, Yoav Ben-Shlomo, Amanda Owen-Smith

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Article in BMJ open, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

What it found

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2 · The registry

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3 · Its place in the literature

Who cites it

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No citing paper in PubMed yet.

4 · The record

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5 · Who and what money

Authors and funding

6 authors.

Lucy PlumbPopulation Health Sciences, University of Bristol Faculty of Health and Life Sciences, Bristol, UK lucy.plumb@bristol.ac.uk.ORCID http://orcid.org/0000-0002-3873-8567
Manish SinhaDepartment of Paediatric Nephrology, Evelina London Children's Hospital, London, UK.
Matthew J RiddPopulation Health Sciences, University of Bristol Faculty of Health and Life Sciences, Bristol, UK.ORCID http://orcid.org/0000-0002-7954-8823
Fergus CaskeyPopulation Health Sciences, University of Bristol Faculty of Health and Life Sciences, Bristol, UK.ORCID http://orcid.org/0000-0002-5199-3925
Yoav Ben-ShlomoPopulation Health Sciences, University of Bristol Faculty of Health and Life Sciences, Bristol, UK.ORCID http://orcid.org/0000-0001-6648-3007
Amanda Owen-SmithPopulation Health Sciences, University of Bristol Faculty of Health and Life Sciences, Bristol, UK.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveDetecting 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.

designSemi-structured, in-depth qualitative study. A topic guide based on the theoretical framework of health behaviour by Scott

settingUK paediatric nephrology units (n

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

resultsTwenty-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.

conclusionsA 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.

Indexed as

Delayed DiagnosisPatient Acceptance of Health CareRenal Insufficiency, ChronicAdolescentChildFemaleHumansMaleNephrologyQualitative ResearchReferral and ConsultationUnited KingdomChronic renal failurePaediatric nephrologyPAEDIATRICSQUALITATIVE RESEARCH

Identifiers

PMID41213685
PMCPMC12598940

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.