Establishing a Core Outcome Set for Autosomal Dominant Polycystic Kidney Disease: Report of the Standardized Outcomes in Nephrology-Polycystic Kidney Disease (SONG-PKD) Consensus Workshop.

Autor:	Cho Y; Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia; Australasian Kidney Trials Network, The University of Queensland, Brisbane, Australia; Translational Research Institute, Brisbane, Australia. Electronic address: yeoungjee.cho@health.qld.gov.au., Tong A; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney., Craig JC; College of Medicine and Public Health, Flinders University, Adelaide, Australia., Mustafa RA; Division of Nephrology and Hypertension, Department of Internal Medicine, University of Kansas Medical Center, Kansas City, KS., Chapman A; Department of Medicine, The University of Chicago, Chicago, IL., Perrone RD; Division of Nephrology, Tufts Medical Center, Tufts University School of Medicine Boston, MA., Ahn C; Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea., Fowler K; The Voice of the Patient, Inc, Seattle, WA., Torres V; Department of Nephrology and Hypertension, Mayo Clinic, Rochester, MN., Gansevoort RT; Faculty of Medical Sciences, University Medical Center, Gronigen, the Netherlands., Ong ACM; Academic Nephrology Unit, Department of Infection Immunity & Cardiovascular Disease, University of Sheffield, Sheffield, United Kingdom., Coolican H; Polycystic Kidney Disease Australia, Sydney, Australia., Tze-Wah Kao J; School of Medicine, Fu Jen Catholic University and Fu Jen Catholic University Hospital, Taipei City, Taiwan; Department of Internal Medicine, National Taiwan University Hospital, Taipei, Taiwan., Harris T; Polycystic Kidney Disease International, Geneva, Switzerland., Gutman T; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney., Shen JI; Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA., Viecelli AK; Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia; Australasian Kidney Trials Network, The University of Queensland, Brisbane, Australia., Johnson DW; Department of Nephrology, Princess Alexandra Hospital, Brisbane, Australia; Australasian Kidney Trials Network, The University of Queensland, Brisbane, Australia; Translational Research Institute, Brisbane, Australia., Au E; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney., El-Damanawi R; Division of Experimental Medicine and Immunotherapeutics, Department of Medicine, University of Cambridge, Cambridge, United Kingdom; Cambridge Clinical Trials Unit, Addenbrooke's Hospital, Cambridge, United Kingdom., Logeman C; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney., Ju A; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney., Manera KE; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney., Chonchol M; School of Medicine, Renal Diseases and Hypertension, University of Colorado, Denver, CO., Odland D; Polycystic Kidney Disease Foundation, Kansas City, MO., Baron D; Polycystic Kidney Disease Foundation, Kansas City, MO., Pei Y; Division of Nephrology, University of Toronto, Toronto, Canada; Division of Genomic Medicine, University of Toronto, Toronto, Canada., Sautenet B; Department of Nephrology, Hypertension, Dialysis, Kidney Transplantation, Tours Hospital, SPHERE-INSERM 1246, University of Tours and Nantes, Tours, France., Rastogi A; Division of Nephrology, Department of Medicine, David Geffen School of Medicine, University of California, Los Angeles, CA., Sharma A; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney; Centre for Transplant and Renal Research, Westmead Institute for Medical Research, The University of Sydney, Sydney, Australia., Rangan G; Centre for Transplant and Renal Research, Westmead Institute for Medical Research, The University of Sydney, Sydney, Australia; Department of Renal Medicine, Westmead Hospital, Western Sydney Local Health District, Sydney, Australia.
Jazyk:	angličtina
Zdroj:	American journal of kidney diseases : the official journal of the National Kidney Foundation [Am J Kidney Dis] 2021 Feb; Vol. 77 (2), pp. 255-263. Date of Electronic Publication: 2020 Aug 06.
DOI:	10.1053/j.ajkd.2020.05.024
Abstrakt:	The omission of outcomes that are of relevance to patients, clinicians, and regulators across trials in autosomal dominant polycystic kidney disease (ADPKD) limits shared decision making. The Standardized Outcomes in Nephrology-Polycystic Kidney Disease (SONG-PKD) Initiative convened an international consensus workshop on October 25, 2018, to discuss the identification and implementation of a potential core outcome set for all ADPKD trials. This article summarizes the discussion from the workshops and the SONG-PKD core outcome set. Key stakeholders including 11 patients/caregivers and 47 health professionals (nephrologists, policy makers, industry, and researchers) attended the workshop. Four themes emerged: "Relevance of trajectory and impact of kidney function" included concerns about a patient's prognosis and uncertainty of when they may need to commence kidney replacement therapy and the lack of an early prognostic marker to inform long-term decisions; "Discerning and defining pain specific to ADPKD" highlighted the challenges in determining the origin of pain, adapting to the chronicity and repeated episodes of pain, the need to place emphasis on pain management, and to have a validated measure for pain; "Highlighting ADPKD consequences" encompassed cyst-related complications and reflected patient's knowledge because of family history and the hereditary nature of ADPKD; and "Risk for life-threatening but rare consequences" such as cerebral aneurysm meant considering both frequency and severity of the outcome. Kidney function, mortality, cardiovascular disease, and pain were established as the core outcomes for ADPKD. (Copyright © 2020 National Kidney Foundation, Inc. All rights reserved.)
Databáze:	MEDLINE
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