Journal
KIDNEY INTERNATIONAL
Volume 98, Issue 3, Pages 553-565Publisher
ELSEVIER SCIENCE INC
DOI: 10.1016/j.kint.2020.05.054
Keywords
children; chronic kidney disease; core outcomes set; dialysis; outcomes; patient-centered care; transplant; trials
Categories
Funding
- University of Sydney Research Accelerator Grant
- National Health and Medical Research Council (NHMRC) Program Grant Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD) [1092957]
- NHMRC Program [1092957]
- NHMRC Fellowship [1106716]
- NHMRC Postgraduate Scholarship [1169149, 1168606, 1168994]
- Jacquot Research Establishment Fellowship
- Princess Alexandra Research Foundation
- Royal Australian College of Physicians Jacquot NHMRC Award for Excellence
- International Society of Nephrology
- National Health and Medical Research Council of Australia [1169149, 1168994, 1168606, 1092957] Funding Source: NHMRC
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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.
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