Cho, Y., Tong, A., Craig, J.C. et al. (28 more authors) (2021) 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. American Journal of Kidney Diseases, 77 (2). pp. 255-263. ISSN 0272-6386
Abstract
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 25th October 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, policymakers, 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; Risk of 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.
Metadata
Item Type: | Article |
---|---|
Authors/Creators: |
|
Copyright, Publisher and Additional Information: | © 2020 Elsevier and the National Kidney Foundation, Inc.. This is an author produced version of a paper subsequently published in American Journal of Kidney Diseases (AJKD). Uploaded in accordance with the publisher's self-archiving policy. Article available under the terms of the CC-BY-NC-ND licence (https://creativecommons.org/licenses/by-nc-nd/4.0/). |
Keywords: | Polycystic kidney disease; Core outcome set; Patient-important outcomes; Outcomes Trials |
Dates: |
|
Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Sheffield Teaching Hospitals |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 18 Aug 2020 07:23 |
Last Modified: | 25 Jan 2022 08:44 |
Status: | Published |
Publisher: | Elsevier |
Refereed: | Yes |
Identification Number: | 10.1053/j.ajkd.2020.05.024 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:164533 |