Evidence map›Paper›PMID 42024155›Full record

ArticlePediatric nephrology (Berlin, Germany)2026

Patient-reported measures in children and adolescents with chronic kidney disease and their validation: A scoping review.

Angela Rejuso, Hassaan Asif, Martin Howell, Chandana Guha, Siah Kim, Allison Jaure, Anastasia Hughes, Kristy Nicholl, Kylie-Ann Mallit, Farzaneh Bouroumad and 6 more

Abstract readScoping Review
PubMed Full text at PMC Publisher
In one paragraph

Article in Pediatric nephrology (Berlin, Germany), 2026. 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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0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

16 authors.

Angela RejusoCentre for Kidney Research, The University of Sydney, The Children's Hospital at Westmead, Westmead, NSW, 2145, Australia. angela.rejuso@sydney.edu.au.ORCID http://orcid.org/0009-0008-7253-5449
Hassaan AsifWestmead Hospital, Westmead, NSW, Australia.
Martin HowellCentre for Kidney Research, The University of Sydney, The Children's Hospital at Westmead, Westmead, NSW, 2145, Australia.
Chandana GuhaCentre for Kidney Research, The University of Sydney, The Children's Hospital at Westmead, Westmead, NSW, 2145, Australia.
Siah KimCentre for Kidney Research, The University of Sydney, The Children's Hospital at Westmead, Westmead, NSW, 2145, Australia.
Allison JaureCentre for Kidney Research, The University of Sydney, The Children's Hospital at Westmead, Westmead, NSW, 2145, Australia.
Anastasia HughesCentre for Kidney Research, The University of Sydney, The Children's Hospital at Westmead, Westmead, NSW, 2145, Australia.
Kristy NichollDepartment of Nephrology, Perth Children's Hospital, Nedlands, WA, Australia.
Kylie-Ann MallitCentre for Kidney Research, The University of Sydney, The Children's Hospital at Westmead, Westmead, NSW, 2145, Australia.
Farzaneh BouroumadCentre for Kidney Research, The University of Sydney, The Children's Hospital at Westmead, Westmead, NSW, 2145, Australia.
Jonathan CraigFlinders University, Bedford Park, SA, Australia.
Armando Teixeira-PintoCentre for Kidney Research, The University of Sydney, The Children's Hospital at Westmead, Westmead, NSW, 2145, Australia.
Anna FrancisQueensland Children's Hospital, Brisbane, QLD, Australia.
Nicholas LarkinsDepartment of Nephrology, Perth Children's Hospital, Nedlands, WA, Australia.
Anita van ZwietenCentre for Kidney Research, The University of Sydney, The Children's Hospital at Westmead, Westmead, NSW, 2145, Australia.
Germaine WongCentre for Kidney Research, The University of Sydney, The Children's Hospital at Westmead, Westmead, NSW, 2145, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

contextChildren with chronic kidney disease (CKD) experience complex challenges affecting their physical, emotional and quality of life outcomes. Patient-reported outcome measures (PROMs) and experience measures (PREMs), collectively known as patient-reported measures (PRMs) are essential to capture these impacts, but their validation and suitability in pediatric CKD research remain underexplored.

objectiveTo identify and evaluate the psychometric properties of PRMs used in research in children with CKD. DATA SOURCES: Medline, Embase, CINAHL and PSYCinfo searched from inception to March 2025. STUDY SELECTION: Studies that reported the results of at least one PRM completed by patients or proxies in children aged 0-18 years with CKD were included. DATA EXTRACTION: Study and measure characteristics and psychometric properties of PRMs were extracted.

resultsOne hundred seventy-five studies involving 21,423 children from 39 countries were eligible and included. 307 PRMs were identified, representing 121 unique tools across 23 outcome domains. Pediatric Quality of Life Inventory (PedsQL) was the most frequently used measure (50%). Approximately 40% were applied in the pediatric CKD population without evidence of external validation. Internal consistency was the most frequently reported psychometric property, assessed for 19 of all identified PRMs (6%). Disease-specific instruments (PRO-KID, TECAVNER) had good internal consistency (α ≥ 0.8).

conclusionsThere is firm reliance on using generic PRMs in children with CKD; however, most lack robust external validation in this population. Co-development and comprehensive validation of disease-specific instruments that reflect outcomes valued by patients and families are required to enhance the relevance of outcome assessment in pediatric CKD care.

Indexed as

Patient Reported Outcome MeasuresQuality of LifeRenal Insufficiency, ChronicAdolescentChildChild, PreschoolHumansPsychometricsReproducibility of ResultsChronic kidney diseaseHealth outcomesPatient-reported measuresPediatric

Identifiers

PMID42024155
PMCPMC13481412

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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.