A Core Outcome Set for Trials in CKD: Report of the Standardized Outcomes in Nephrology–Chronic Kidney Disease (SONG-CKD) Stakeholder Workshops

Andrea Matus Gonzalez, Rosanna Cazzolli, Magdalena Madero, Nicole Evangelidis, Martin Howell, Benedicte Sautenet, Amelie Bernier-Jean, Yeoungjee Cho, Laura Cortes Sanabria, Jonathan C. Craig, Ian H. de Boer, Samuel Fung, Daniel Gallego, Chandana Guha, Jenny I. Shen, Andrew S. Levey, Adeera Levin, Eduardo Lorca, Sebastian Cabrera, Haydee MelladoSoledad Molina, Ximena Atilano, Lorena Sandino, Macarena Arancibia, Alejandro Sepulveda, Marcelo Urra, Maria de los Angeles Bravo, Karine Manera, Javier Recabarren, Ikechi G. Okpechi, Patrick Rossignol, Nicole Scholes-Robertson, Laura Sola, Armando Teixeira-Pinto, Tim Usherwood, Andrea K. Viecelli, David C. Wheeler, Katherine Widders, Allison Jaure, SONG-CKD Stakeholder Workshop Investigators

Research output: Contribution to journalArticlepeer-review

Abstract

Omitting outcomes of importance to patients with chronic kidney disease (CKD) and their caregivers from trials can impede decision making based on patient-centered outcomes. As part of the global Standardized Outcomes in Nephrology–Chronic Kidney Disease (SONG-CKD) initiative, we established a consensus-based set of core outcomes for trials in CKD (prior to the need for kidney replacement therapy). To finalize the proposed set of core outcomes that were identified through focus groups and an international Delphi survey, we convened 2 international stakeholder workshops in English and Spanish languages that involved 61 patients/caregivers and 75 health professionals from 18 countries. Participants were asked to discuss and endorse the potential core outcomes (mortality, kidney function, life participation, and cardiovascular disease), and to provide suggestions for implementing the core outcomes. The discussions were summarized into 4 themes: reflecting a comprehensive approach to health, facilitating patient empowerment in their own care, ensuring applicability to broad geographic areas and populations, and feasibility for implementation. Patients, caregivers, and health professionals agreed that mortality, kidney function, life participation, and cardiovascular disease should be established as core outcomes for trials in CKD.

Original languageEnglish
Pages (from-to)745-753
Number of pages9
JournalAmerican Journal of Kidney Diseases
Volume85
Issue number6
Early online date23 Jan 2025
DOIs
Publication statusPublished - Jun 2025

Keywords

  • Chronic kidney disease
  • core outcome set
  • outcomes
  • patient-centered care
  • trials

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