Abstract: FR-PO0741
Core Outcome Measure for Life Participation in Children with CKD: Standardised Outcomes in Nephrology - Children and Adolescents with CKD (SONG-Kids) Consensus Workshop Report
Session Information
- Pediatric Nephrology: CKD, ESKD, and Glomerular Diseases
November 07, 2025 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Pediatric Nephrology
- 1900 Pediatric Nephrology
Authors
- Hughes, Anastasia, The University of Sydney School of Public Health, Sydney, New South Wales, Australia
- Jaure, Allison, The University of Sydney School of Public Health, Sydney, New South Wales, Australia
Group or Team Name
- SONG Initiative.
Background
Life participation is of critical importance to children/adolescents with chronic kidney disease (CKD), caregivers and health professionals. However, life participation is assessed and reported inconsistently and uncommonly in trials involving children with CKD. The aim of the workshop was to describe the perspectives of patients, caregivers and health professionals on developing a core outcome measure for life participation in children with CKD.
Methods
Four consensus workshops (one in-person [English language], three online [two English, one Spanish language]) were held to discuss the relevance of content, appropriateness, and feasibility of a proposed patient-reported core outcome measure. Transcripts were analyzed thematically. 172 participants, including 54 patients and caregivers, and 118 health professionals from 16 countries attended.
Results
Four themes were identified. Allowing individual interpretation and valuation of life participation included encapsulating key domains of life participation, recognizing varying degrees of achieving participation in different domains, reflecting personal context and values, emphasizing meaningful participation in activities, acknowledging changes over time, and attributing responses to the intervention. Respecting developmental needs entailed developing age-specific measures, considering literacy, utilizing relevant and clear language, using engaging formats, and establishing an appropriate recall period. Capturing broad perspectives included ensuring universal applicability across settings and allowing for proxy completion. Establishing widespread implementation by reducing the completion burden, validating for all stages and diagnosis of CKD, and enabling comparisons across CKD stages were suggested.
Conclusion
A core outcome measure for life participation in children with CKD should be widely applicable, developmentally appropriate, allow indivdiual interpretation, and be psychometrically robust and feasible to implement. The proposed measure will be revised and validated to be included in all trials in children with CKD. Measuring life participation in a consistent and meaningful way across trials can better support patient-centered decision making, disease management and outcomes in children with CKD.
Funding
- Government Support – Non-U.S.