Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-KIDS) consensus workshops

Jonathan Craig, Charlotte Logeman, Aditi Sinha, Allison Dart, Allison Eddy, Chandana Guha, Debbie S. Gipson, Detlef Bockenhauer, Hui Kim Yap, Jaap Groothoff, Michael Zappitelli, Nicholas J.A. Webb, Stephen I. Alexander, Susan Furth, Susan Samuel, Alicia Neu, Andrea Viecelli, Angela Ju, Ankit Sharma, Eric H. AuHailey Desmond, Jenny I. Shen, Karine Manera, Karolis Azukaitis, Louese Dunn, Simon A. Carter, Talia Gutman, Yeoungjee Cho, Amanda Walker, Anna Francis, Cheryl Sanchez-Kazi, Joshua Kausman, Meghan Pearl, Nadine Benador, Shobha Sahney, Allison Tong, SONG-Kids consensus workshops investigators

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish
Pages (from-to)553-565
Number of pages13
JournalKidney International
Volume98
Issue number3
DOIs
Publication statusPublished - 1 Sep 2020

Keywords

  • children
  • chronic kidney disease
  • core outcomes set
  • dialysis
  • outcomes
  • patient-centered care
  • transplant
  • trials

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    Craig, J., Logeman, C., Sinha, A., Dart, A., Eddy, A., Guha, C., Gipson, D. S., Bockenhauer, D., Yap, H. K., Groothoff, J., Zappitelli, M., Webb, N. J. A., Alexander, S. I., Furth, S., Samuel, S., Neu, A., Viecelli, A., Ju, A., Sharma, A., ... SONG-Kids consensus workshops investigators (2020). Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-KIDS) consensus workshops. Kidney International, 98(3), 553-565. https://doi.org/10.1016/j.kint.2020.05.054