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

Conference Paper

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.

Full Text

Duke Authors

Cited Authors

  • Hanson, CS; Craig, JC; Logeman, C; Sinha, A; Dart, A; Eddy, AA; Guha, C; Gipson, DS; Bockenhauer, D; Yap, H-K; Groothoff, J; Zappitelli, M; Webb, NJA; Alexander, SI; Furth, SL; Samuel, S; Neu, A; Viecelli, AK; Ju, A; Sharma, A; Au, EH; Desmond, H; Shen, JI; Manera, KE; Azukaitis, K; Dunn, L; Carter, SA; Gutman, T; Cho, Y; Walker, A; Francis, A; Sanchez-Kazi, C; Kausman, J; Pearl, M; Benador, N; Sahney, S; Tong, A; SONG-Kids consensus workshops investigators,

Published Date

  • September 2020

Published In

Volume / Issue

  • 98 / 3

Start / End Page

  • 553 - 565

PubMed ID

  • 32628942

Pubmed Central ID

  • 32628942

Electronic International Standard Serial Number (EISSN)

  • 1523-1755

Digital Object Identifier (DOI)

  • 10.1016/j.kint.2020.05.054

Conference Location

  • United States