| Literature DB >> 32628942 |
Camilla S Hanson1, Jonathan C Craig2, Charlotte Logeman3, Aditi Sinha4, Allison Dart5, Allison A Eddy6, Chandana Guha3, Debbie S Gipson7, Detlef Bockenhauer8, Hui-Kim Yap9, Jaap Groothoff10, Michael Zappitelli11, Nicholas J A Webb12, Stephen I Alexander13, Susan L Furth14, Susan Samuel15, Alicia Neu16, Andrea K Viecelli17, Angela Ju3, Ankit Sharma3, Eric H Au3, Hailey Desmond7, Jenny I Shen18, Karine E Manera3, Karolis Azukaitis19, Louese Dunn20, Simon A Carter21, Talia Gutman3, Yeoungjee Cho17, Amanda Walker22, Anna Francis23, Cheryl Sanchez-Kazi24, Joshua Kausman25, Meghan Pearl26, Nadine Benador27, Shobha Sahney26, Allison Tong3.
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.Entities:
Keywords: children; chronic kidney disease; core outcomes set; dialysis; outcomes; patient-centered care; transplant; trials
Mesh：
Year: 2020 PMID： 32628942 DOI： 10.1016/j.kint.2020.05.054
Source DB: PubMed Journal: Kidney Int ISSN： 0085-2538 Impact factor: 10.612