Trials in children with chronic kidney disease do not consistently report outcomes that are critically important to patients and caregivers. This can diminish the relevance and reliability of evidence for decision making, limiting the implementation of results into practice and policy. As part of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-Kids) initiative, we convened 2 consensus workshops in San Diego, California (7 patients, 24 caregivers, 43 health professionals) and Melbourne, Australia (7 patients, 23 caregivers, 49 health professionals). This report summarizes the discussions on the identification and implementation of the SONG-Kids core outcomes set. Four themes were identified; survival and life participation are common high priority goals, capturing the whole child and family, ensuring broad relevance across the patient journey, and requiring feasible and valid measures. Stakeholders supported the inclusion of mortality, infection, life participation, and kidney function as the core outcomes domains for children with chronic kidney disease.
ContributorsCamilla S. Hanson
Jonathan C. Craig
Charlotte Logeman
Aditi Sinha
Allison Dart
Allison A. Eddy
Chandana Guha
Debbie S. Gipson
DetlefBockenhauer
Hui-Kim Yap
Jaap Groothoff
Michael Zappitelli
Nicholas J.A. Webb
Stephen I. Alexander
Susan L. Furth
Susan Samuel
Alicia Neu
Andrea K. Viecelli…
Zeynab Salih
Disease Category: Kidney disease
Disease Name: Chronic kidney disease
Age Range: 0 - 21
Sex: Either
Nature of Intervention: Any
- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Patient perspectives
- Semi structured discussion