• Karine E Manera, Allison Tong, Jonathan C Craig, Jenny Shen, Shilpa Jesudason, Yeoungjee Cho, Benedicte Sautenet, Armando Teixeira-Pinto, Martin Howell, Angela Yee-Moon Wang, Edwina A Brown, Gillian Brunier, Jeffrey Perl, Jie Dong, Martin Wilkie, Rajnish Mehrotra, Roberto Pecoits-Filho, Saraladevi Naicker, Tony Dunning, Nicole Scholes-Robertson, and David W Johnson.
• Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Sydney, Australia. Electronic address: karine.manera@sydney.edu.au.
• Kidney Int. 2019 Sep 1; 96 (3): 699-710.

AbstractShared decision-making about clinical care options in end-stage kidney disease is limited by inconsistencies in the reporting of outcomes and the omission of patient-important outcomes in trials. Here we generated a consensus-based prioritized list of outcomes to be reported during trials in peritoneal dialysis (PD). In an international, online, three-round Delphi survey, patients/caregivers and health professionals rated the importance of outcomes using a 9-point Likert scale (with 7-9 indicating critical importance) and provided comments. Using a Best-Worst Scale (BWS), the relative importance of outcomes was estimated. Comments were analyzed thematically. In total, 873 participants (207 patients/caregivers and 666 health professionals) from 68 countries completed round one, 629 completed round two and 530 completed round three. The top outcomes were PD-related infection, membrane function, peritoneal dialysis failure, cardiovascular disease, death, catheter complications, and the ability to do usual activities. Compared with health professionals, patients/caregivers gave higher priority to six outcomes: blood pressure (mean difference, 0.4), fatigue (0.3), membrane function (0.3), impact on family/friends (0.1), peritoneal thickening (0.1) and usual activities (0.1). Four themes were identified that underpinned the reasons for ratings: contributing to treatment longevity, preserving quality of life, escalating morbidity, and irrelevant and futile information and treatment. Patients/caregivers and health professionals gave highest priority to clinical outcomes. In contrast to health professionals, patients/caregivers gave higher priority to lifestyle-related outcomes including the impact on family/friends and usual activities. Thus, prioritization will inform a core outcome set to improve the consistency and relevance of outcomes for trials in PD.Copyright © 2019 International Society of Nephrology. Published by Elsevier Inc. All rights reserved.

29 keywords...

hide…