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Implementing core outcomes in kidney disease: report of the Standardized Outcomes in Nephrology (SONG) implementation workshop

Journal

KIDNEY INTERNATIONAL
Volume 94, Issue 6, Pages 1053-1068

Publisher

ELSEVIER SCIENCE INC
DOI: 10.1016/j.kint.2018.08.018

Keywords

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

Funding

  1. National Health and Medical Research Council (NHMRC) [1098815]
  2. NHMRC [1106716]
  3. NHMRC Medical Postgraduate Scholarship [1114539, 1151246]
  4. Royal Australasian College of Physicians (Jacquot NHMRC Award for Excellence)
  5. National Institute of Diabetes and Digestive and Kidney Diseases at the National Institute of Health [K23DK103972]
  6. NATIONAL INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY DISEASES [K23DK103972] Funding Source: NIH RePORTER

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There are an estimated 14,000 randomized trials published in chronic kidney disease. The most frequently reported outcomes are biochemical endpoints, rather than clinical and patient-reported outcomes including cardiovascular disease, mortality, and quality of life. While many trials have focused on optimizing kidney health, the heterogeneity and uncertain relevance of outcomes reported across trials may limit their policy and practice impact. The international Standardized Outcomes in Nephrology (SONG) Initiative was formed to identify core outcomes that are critically important to patients and health professionals, to be reported consistently across trials. We convened a SONG Implementation Workshop to discuss the implementation of core outcomes. Eighty-two patients/caregivers and health professionals participated in plenary and breakout discussions. In this report, we summarize the findings of the workshop in two main themes: socializing the concept of core outcomes, and demonstrating feasibility and usability. We outline implementation strategies and pathways to be established through partnership with stakeholders, which may bolster acceptance and reporting of core outcomes in trials, and encourage their use by end-users such as guideline producers and policymakers to help improve patient-important outcomes.

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