Author Identifier (ORCID)
Nicholas Larkins: https://orcid.org/0000-0002-6914-4884
Abstract
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.
Keywords
Chronic kidney disease, health outcomes, patient-reported measures, pediatric
Document Type
Journal Article
Date of Publication
1-1-2026
Publication Title
Pediatric Nephrology
Publisher
Springer
School
Nutrition and Health Innovation Research Institute
Creative Commons License
This work is licensed under a Creative Commons Attribution 4.0 License.
Comments
Rejuso, A., Asif, H., Howell, M., Guha, C., Kim, S., Jaure, A., Hughes, A., Nicholl, K., Mallit, K., Bouroumad, F., Craig, J., Teixeira-Pinto, A., Francis, A., Larkins, N., Van Zwieten, A., & Wong, G. (2026). Patient-reported measures in children and adolescents with chronic kidney disease and their validation: A scoping review. Pediatric Nephrology. Advance online publication. https://doi.org/10.1007/s00467-026-07266-x