Journal article

Developing Consensus-Based Outcome Domains for Trials in Children and Adolescents with CKD: An International Delphi Survey

Charlotte Logeman, Chandana Guha, Martin Howell, Camilla S Hanson, Jonathan C Craig, Susan Samuel, Michael Zappitelli, Mina Matsuda-Abedini, Allison Dart, Susan Furth, Allison Eddy, Jaap Groothoff, Hui-Kim Yap, Detlef Bockenhauer, Aditi Sinha, Stephen Alexander, Stuart L Goldstein, Debbie S Gipson, Mini Michael, Amanda Walker Show all

American Journal of Kidney Diseases | W B SAUNDERS CO-ELSEVIER INC | Published : 2020

Abstract

RATIONALE & OBJECTIVE: The inconsistency in outcomes reported and lack of patient-reported outcomes across trials in children with chronic kidney disease (CKD) limits shared decision making. As part of the Standardized Outcomes in Nephrology (SONG)-Kids initiative, we aimed to generate a consensus-based prioritized list of critically important outcomes to be reported in all trials in children with CKD. STUDY DESIGN: An online 2-round Delphi survey in English, French, and Hindi languages. SETTINGS & PARTICIPANTS: Patients (aged 8-21 years), caregivers/family, and health care professionals (HCPs) rated the importance of outcomes using a 9-point Likert scale (7-9 indicating critical importance)..

View full abstract

Grants

Awarded by National Health and Medical Research Council (NHMRC) Program grant


Awarded by NHMRC Fellowship


Awarded by NHMRC Program Grant Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD)


Funding Acknowledgements

Ms Logeman and Dr Hanson are supported by the National Health and Medical Research Council (NHMRC) Program grant (ID1092957). Dr Tong is supported by an NHMRC Fellowship (ID1106716). The study was funded by The University of Sydney Research Accelerator Grant and the NHMRC Program Grant Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD; ID1092957). The funders had no role in the study design, data collection, analysis, reporting, or decision to submit for publication.