What question did this study set out to answer?

To assess the current state of patient-reported measures (PRMs) for children and adolescents with chronic kidney disease (CKD) and highlight the necessity for validation.

April 25, 2026Pediatric Nephrology0 citationsOpen Access

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

ARAngela Rejuso HAHassaan Asif MHMartin Howell

Key Points

To assess the current state of patient-reported measures (PRMs) for children and adolescents with chronic kidney disease (CKD) and highlight the necessity for validation.
Reviewed existing studies on PRMs used in pediatric CKD populations.
Identified gaps in external validation of these measures.
Evaluated the need for disease-specific instruments co-developed with stakeholders.
Generic patient-reported measures are commonly used but lack robust validation in pediatric CKD.
There is a significant need for co-developed, disease-specific instruments reflecting patient and family outcomes.
Recommendations include enhancing relevance in outcome assessments for pediatric CKD care.

Abstract

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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