4.7 Article

An international Delphi survey helped develop consensus-based core outcome domains for trials in peritoneal dialysis

Journal

KIDNEY INTERNATIONAL
Volume 96, Issue 3, Pages 699-710

Publisher

ELSEVIER SCIENCE INC
DOI: 10.1016/j.kint.2019.03.015

Keywords

core outcome sets; kidney disease; outcomes; patient-centered care; peritoneal dialysis; trials

Funding

  1. International Society for Peritoneal Dialysis
  2. National Health and Medical Research Council (NHMRC) Postgraduate Scholarship [APP1151343]
  3. NHMRC [APP1106716, APP1117534, APP1126256]
  4. National Institutes of Health-National Institute of Diabetes and Digestive Kidney Diseases [K23DK103972]

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Shared 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 PDrelated 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.

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