{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,16]],"date-time":"2026-04-16T18:13:38Z","timestamp":1776363218741,"version":"3.51.2"},"reference-count":27,"publisher":"Oxford University Press (OUP)","issue":"8","license":[{"start":{"date-parts":[[2024,1,17]],"date-time":"2024-01-17T00:00:00Z","timestamp":1705449600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/journals\/pages\/open_access\/funder_policies\/chorus\/standard_publication_model"}],"funder":[{"DOI":"10.13039\/501100020884","name":"Agencia Nacional de Investigaci\u00f3n y Desarrollo","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100020884","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Becas Chile\u2014Doctorado en el extranjero","award":["72210455"],"award-info":[{"award-number":["72210455"]}]},{"DOI":"10.13039\/501100000925","name":"National Health and Medical Research Council","doi-asserted-by":"publisher","award":["APP1106716"],"award-info":[{"award-number":["APP1106716"]}],"id":[{"id":"10.13039\/501100000925","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,7,31]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n               <jats:sec>\n                  <jats:title>Background<\/jats:title>\n                  <jats:p>Many outcomes of high priority to patients and clinicians are infrequently and inconsistently reported across trials in chronic kidney disease (CKD), which generates research waste and limits evidence-informed decision making. We aimed to generate consensus among patients\/caregivers and health professionals on critically important outcomes for trials in CKD prior to kidney failure and the need for kidney replacement therapy, and to describe the reasons for their choices.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>This was an online two-round international Delphi survey. Adult patients with CKD (all stages and diagnoses), caregivers and health professionals who could read English, Spanish or French were eligible. Participants rated the importance of outcomes using a Likert scale (7\u20139 indicating critical importance) and a Best\u2013Worst Scale. The scores for the two groups were assessed to determine absolute and relative importance. Comments were analysed thematically.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>In total, 1399 participants from 73 countries completed Round 1 of the Delphi survey, including 628 (45%) patients\/caregivers and 771 (55%) health professionals. In Round 2, 790 participants (56% response rate) from 63 countries completed the survey including 383 (48%) patients\/caregivers and 407 (52%) health professionals. The overall top five outcomes were: kidney function, need for dialysis\/transplant, life participation, cardiovascular disease and death. In the final round, patients\/caregivers indicated higher scores for most outcomes (17\/22 outcomes), and health professionals gave higher priority to mortality, hospitalization and cardiovascular disease (mean difference &amp;gt;0.3). Consensus was based upon the two groups yielding median scores of \u22657 and mean scores &amp;gt;7, and the proportions of both groups rating the outcome as \u2018critically important\u2019 being &amp;gt;50%. Four themes reflected the reasons for their priorities: imminent threat of a health catastrophe, signifying diminishing capacities, ability to self-manage and cope, and tangible and direct consequences.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>Across trials in CKD, the outcomes of highest priority to patients, caregivers and health professionals were kidney function, need for dialysis\/transplant, life participation, cardiovascular disease and death.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/ndt\/gfae010","type":"journal-article","created":{"date-parts":[[2024,1,18]],"date-time":"2024-01-18T17:40:10Z","timestamp":1705599610000},"page":"1310-1321","source":"Crossref","is-referenced-by-count":13,"title":["Outcomes for clinical trials involving adults with chronic kidney disease: a multinational Delphi survey involving patients, caregivers and health professionals"],"prefix":"10.1093","volume":"39","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5058-6239","authenticated-orcid":false,"given":"Andrea","family":"Matus Gonzalez","sequence":"first","affiliation":[{"name":"Sydney School of Public Health, The University of Sydney , Sydney , Australia"},{"name":"Centre for Kidney Research, The Children's Hospital at Westmead , Westmead, Sydney , Australia"}]},{"given":"Nicole","family":"Evangelidis","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, The University of Sydney , Sydney , Australia"},{"name":"Centre for Kidney Research, The Children's Hospital at Westmead , Westmead, Sydney , Australia"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9740-712X","authenticated-orcid":false,"given":"Martin","family":"Howell","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, The University of Sydney , Sydney , Australia"}]},{"given":"Allison","family":"Jaure","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, The University of Sydney , Sydney , Australia"},{"name":"Centre for Kidney Research, The Children's Hospital at Westmead , Westmead, Sydney , Australia"}]},{"given":"Benedicte","family":"Sautenet","sequence":"additional","affiliation":[{"name":"Department of Nephrology, CHU Tours, INSERM SPHERE U1246, University of Tours, University of Nantes , Tours , France"}]},{"given":"Magdalena","family":"Madero","sequence":"additional","affiliation":[{"name":"Division of Nephrology, Department of Medicine, Instituto Nacional de Cardiolog\u00eda Ignacio Ch\u00e1vez , Mexico City , Mexico"}]},{"given":"Gloria","family":"Ashuntantang","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine and Specialties, Faculty of Medicine and Biomedical Sciences, University of Yaounde I , Yaounde , Cameroon"}]},{"given":"Samaya","family":"Anumudu","sequence":"additional","affiliation":[{"name":"Selzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine , Houston, TX , USA"}]},{"given":"Amelie","family":"Bernier-Jean","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, The University of Sydney , Sydney , Australia"},{"name":"Centre for Kidney Research, The Children's Hospital at Westmead , Westmead, Sydney , Australia"}]},{"given":"Louese","family":"Dunn","sequence":"additional","affiliation":[{"name":"Sheffield Kidney Institute, Sheffield Teaching Hospitals NHS Foundation Trust , Sheffield , UK"}]},{"given":"Yeoungjee","family":"Cho","sequence":"additional","affiliation":[{"name":"Department of Nephrology, Princess Alexandra Hospital , Brisbane, QLD , Australia"},{"name":"Australasian Kidney Trials Network, Centre for Health Services Research, University of Queensland , Brisbane, QLD , Australia"},{"name":"Translational Research Institute , Brisbane, QLD , Australia"}]},{"given":"Laura","family":"Cortes Sanabria","sequence":"additional","affiliation":[{"name":"Direcci\u00f3n de Educaci\u00f3n e Investigaci\u00f3n en Salud, Unidad M\u00e9dica de Alta Especialidad, Hospital de Especialidades, Centro M\u00e9dico Nacional de Occidente, Instituto Mexicano del Seguro Social , Guadalajara , Mexico"}]},{"given":"Ian H","family":"de Boer","sequence":"additional","affiliation":[{"name":"Department of Medicine, Kidney Research Institute, University of Washington , Seattle, WA , USA"}]},{"given":"Samuel","family":"Fung","sequence":"additional","affiliation":[{"name":"Division of Nephrology, Department of Medicine & Geriatrics, Princess Margaret Hospital , Hong Kong"}]},{"given":"Daniel","family":"Gallego","sequence":"additional","affiliation":[{"name":"European Kidney Patient\u2019s Federation, Austria. Federacion Nacional Alcer president, Spanish Kidney Patient\u2019s Federation , Spain"}]},{"given":"Chandana","family":"Guha","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, The University of Sydney , Sydney , Australia"},{"name":"Centre for Kidney Research, The Children's Hospital at Westmead , Westmead, Sydney , Australia"}]},{"given":"Andrew S","family":"Levey","sequence":"additional","affiliation":[{"name":"Division of Nephrology, Tufts Medical Center , Boston, MA , USA"}]},{"given":"Adeera","family":"Levin","sequence":"additional","affiliation":[{"name":"Division of Nephrology, University of British Columbia , Vancouver , Canada"}]},{"given":"Eduardo","family":"Lorca","sequence":"additional","affiliation":[{"name":"Eastern Department of Internal Medicine, Faculty of Medicine, University of Chile, and Hospital del Salvador Nephrology Service , Santiago de Chile"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6545-9715","authenticated-orcid":false,"given":"Ikechi G","family":"Okpechi","sequence":"additional","affiliation":[{"name":"Division of Nephrology and Hypertension, University of Cape Town , Cape Town , South Africa"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4470-7932","authenticated-orcid":false,"given":"Patrick","family":"Rossignol","sequence":"additional","affiliation":[{"name":"Universit\u00e9 de Lorraine, Inserm, Centre d'Investigations Clinique and Inserm U1116; CHRU Nancy ; F-CRIN INI-CRCT, Nancy , France"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8260-0453","authenticated-orcid":false,"given":"Nicole","family":"Scholes-Robertson","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, The University of Sydney , Sydney , Australia"},{"name":"Centre for Kidney Research, The Children's Hospital at Westmead , Westmead, Sydney , 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