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

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.

Living well with kidney disease by patient and care partner empowerment: kidney health for everyone everywhere

“…Several regional and global kidney health projects have addressed these important questions including the Standardized Outcomes in Nephrology (SONG) with more than 9000 patients, family members and health professionals from over 70 countries [ 2 , 3 ]. Across all treatment stages, including CKD, dialysis and transplantation, SONG participating children and adults with CKD consistently gave higher priority to symptoms and life impacts than health professionals [ 2 , 3 ]. In comparison, health professionals gave higher priority to mortality and hospitalization than patients and family members.…”

Living well with kidney disease by patient and care‐partner empowerment: Kidney health for everyone everywhere

“…Several regional and global kidney health projects have addressed these important questions, including the Standardised Outcomes in Nephrology (SONG) with more than 9000 patients, family members and health professionals from over 70 countries (Carter et al, 2020; Hanson et al, 2020). Across all treatment stages, including CKD, dialysis and transplantation, SONG participating children and adults with CKD consistently gave higher priority to symptoms and life impacts than health professionals (Carter et al, 2020; Hanson et al, 2020). In comparison, health professionals gave higher priority to mortality and hospitalisation than patients and family members.…”

Living well with kidney disease by patient and care‐partner empowerment: kidney health for everyone everywhere

“…Several regional and global kidney health projects have addressed these important questions including the Standardised Outcomes in Nephrology (SONG) with more than 9000 patients, family members and health professionals from over 70 countries 2,3 . Across all treatment stages, including CKD, dialysis and transplantation, SONG participating children and adults with CKD consistently gave higher priority to symptoms and life impacts than health professionals 2,3 . In comparison, health professionals gave higher priority to mortality and hospitalisation than patients and family members.…”