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Published on: June 16, 2014
Patient-reported measures in children and adolescents with chronic kidney disease and their validation: A scoping
Angela Rejuso1,2, Hassaan Asif3, Martin Howell4,5,6
1Centre for Kidney Research, The University of Sydney, The Children's Hospital at Westmead, Westmead, NSW, 2145, Australia. angela.rejuso@sydney.edu.au.
Insights
Patient-reported measures (PRMs) are crucial for assessing pediatric chronic kidney disease (CKD) impacts. However, many generic PRMs lack validation in this population, necessitating the development of disease-specific tools.
Area of Science:
- Pediatric Nephrology
- Health Outcomes Research
- Psychometrics
Background:
- Children with chronic kidney disease (CKD) face significant physical and emotional challenges impacting their quality of life.
- Patient-reported measures (PRMs) are vital for capturing these impacts, but their use in pediatric CKD research requires further evaluation.
Purpose of the Study:
- To systematically identify and evaluate the psychometric properties of PRMs utilized in research involving children with CK.
- To assess the suitability and validation status of existing PRMs for the pediatric CKD population.
Main Methods:
- A comprehensive literature search was conducted across Medline, Embase, CINAHL, and PsycInfo databases.
- Studies including PRMs completed by patients or proxies in children (0-18 years) with CKD were eligible for inclusion.
- Data extraction focused on study characteristics, measure details, and reported psychometric properties.
Main Results:
- 175 studies involving 21,423 children identified 307 PRMs across 23 domains; Pediatric Quality of Life Inventory (PedsQL) was most common.
- Approximately 40% of PRMs were used in pediatric CKD without external validation.
- While internal consistency was most reported, disease-specific instruments like PRO-KID and TECAVNER demonstrated good internal consistency (α ≥ 0.8).
Conclusions:
- Generic PRMs are widely used in pediatric CKD research, but often lack robust external validation.
- There is a critical need for co-development and thorough validation of disease-specific PRMs tailored to the outcomes valued by pediatric CKD patients and families.
Context:
Children 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.
Objective:
To 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.
Results:
One 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).
Conclusions:
There 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.
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