Please use this identifier to cite or link to this item: https://dora.health.qld.gov.au/qldresearchjspui/handle/1/2571
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dc.contributor.authorTeo, Sharonen
dc.contributor.authorWarady, Bradley A.en
dc.contributor.authorNeu, Aliciaen
dc.contributor.authorChristian, Martinen
dc.contributor.authorLiu, Isaacen
dc.contributor.authorSautenet, Benedicteen
dc.contributor.authorTong, Allisonen
dc.contributor.authorMcTaggart, Stevenen
dc.contributor.authorTeixeira-Pinto, Armandoen
dc.contributor.authorCarter, Simonen
dc.contributor.authorGutman, Taliaen
dc.contributor.authorLogeman, Charlotteen
dc.contributor.authorGuha, Chandanaen
dc.contributor.authorHowell, Martinen
dc.contributor.authorHanson, Camilla S.en
dc.contributor.authorCraig, Jonathan C.en
dc.contributor.authorSamuel, Susanen
dc.contributor.authorZappitelli, Michaelen
dc.contributor.authorMatsuda-Abedini, Minaen
dc.contributor.authorDart, Allisonen
dc.contributor.authorFurth, Susanen
dc.contributor.authorEddy, Allisonen
dc.contributor.authorGroothoff, Jaapen
dc.contributor.authorYap, Hui-Kimen
dc.contributor.authorBockenhauer, Detlefen
dc.contributor.authorSinha, Aditien
dc.contributor.authorAlexander, Stephen I.en
dc.contributor.authorGoldstein, Stuart L.en
dc.contributor.authorGipson, Debbie S.en
dc.contributor.authorMichael, Minien
dc.contributor.authorWalker, Amandaen
dc.contributor.authorKausman, Joshuaen
dc.contributor.authorGaillard, Segoleneen
dc.contributor.authorBacchetta, Justineen
dc.contributor.authorRheault, Michelle N.en
dc.date.accessioned2022-11-07T23:32:55Z-
dc.date.available2022-11-07T23:32:55Z-
dc.date.issued2020en
dc.identifier.citation76, (4), 2020, p. 533-545en
dc.identifier.otherRISen
dc.identifier.urihttp://dora.health.qld.gov.au/qldresearchjspui/handle/1/2571-
dc.description.abstractRationale & 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) and completed a Best-Worst Scale.; Analytical Approach: We assessed the absolute and relative importance of outcomes. Comments were analyzed thematically.; Results: 557 participants (72 [13%] patients, 132 [24%] caregivers, and 353 [63%] HCPs) from 48 countries completed round 1 and 312 (56%) participants (28 [40%] patients, 64 [46%] caregivers, and 220 [56%] HCPs) completed round 2. Five outcomes were common in the top 10 for each group: mortality, kidney function, life participation, blood pressure, and infection. Caregivers and HCPs rated cardiovascular disease higher than patients. Patients gave lower ratings to all outcomes compared with caregivers/HCPs except they rated life participation (round 2 mean difference, 0.1), academic performance (0.1), mobility (0.4), and ability to travel (0.4) higher than caregivers and rated ability to travel (0.4) higher than HCPs. We identified 3 themes: alleviating disease and treatment burden, focusing on the whole child, and resolving fluctuating and conflicting goals.; Limitations: Most participants completed the survey in English.; Conclusions: Mortality, life participation, kidney function, and blood pressure were consistently highly prioritized by patients, caregivers, and HCPs. Patients gave higher priority to some lifestyle-related outcomes compared with caregivers/HCPs. Establishing critically important outcomes for all trials in children with CKD may improve consistent reporting of survival, kidney health, and clinical and life impact outcomes that are meaningful for decision making. (Copyright © 2020 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.)Date of Electronic Publication: 2020 Jul 10. Current Imprints: Publication: Philadelphia Pa : W.B. Saunders; Original Imprints: Publication: New York, N.Y. : Grune & Stratton, c1981- <br />en
dc.language.isoenen
dc.relation.ispartofAmerican journal of kidney diseases : the official journal of the National Kidney Foundationen
dc.titleDeveloping Consensus-Based Outcome Domains for Trials in Children and Adolescents With CKD: An International Delphi Surveyen
dc.typeArticleen
dc.identifier.doi10.1053/j.ajkd.2020.03.014en
dc.subject.keywordsCaregiversen
dc.subject.keywordsChilden
dc.subject.keywordsFemaleen
dc.subject.keywordsHealth Personnelen
dc.subject.keywordsHumansen
dc.subject.keywordsInternational Cooperationen
dc.subject.keywordsMaleen
dc.subject.keywordsTreatment Outcomeen
dc.subject.keywordsYoung Adulten
dc.subject.keywordsChronic kidney disease (CKD)*en
dc.subject.keywordsDelphi survey*en
dc.subject.keywordsadolescents*en
dc.subject.keywordsblood pressure*en
dc.subject.keywordscaregivers*en
dc.subject.keywordschildren*en
dc.subject.keywordsclinical trial design*en
dc.subject.keywordscore outcome set*en
dc.subject.keywordskidney function*en
dc.subject.keywordslife participation*en
dc.subject.keywordsmortality*en
dc.subject.keywordsoutcome measures*en
dc.subject.keywordsoutcomes*en
dc.subject.keywordspatient-centered outcomes*en
dc.subject.keywordspediatrics*en
dc.subject.keywordspriority ranking*en
dc.subject.keywordstreatment goals*en
dc.subject.keywordsRenal Insufficiency, Chronic/*therapyen
dc.subject.keywordsAdolescenten
dc.subject.keywordsPatient Outcome Assessment*en
dc.subject.keywordsConsensus*Delphi Technique*en
dc.relation.urlhttps://search.ebscohost.com/login.aspx?direct=true&AuthType=ip,athens&db=mdc&AN=32654889&site=ehost-liveen
dc.identifier.risid3560en
dc.description.pages533-545en
item.grantfulltextnone-
item.openairetypeArticle-
item.fulltextNo Fulltext-
item.languageiso639-1en-
item.openairecristypehttp://purl.org/coar/resource_type/c_18cf-
item.cerifentitytypePublications-
Appears in Sites:Children's Health Queensland Publications
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