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.
Bibliographical noteFunding Information:
The workshop is funded by the National Health and Medical Research Council (NHMRC) ( 1098815 ). AT is supported by a NHMRC Fellowship ( 1106716 ). AV is supported by a NHMRC Medical Postgraduate Scholarship ( 1114539 ) and the Royal Australasian College of Physicians (Jacquot NHMRC Award for Excellence). ABJ is supported by a NHMRC Medical Postgraduate Scholarship ( 1151246 ). JS is supported by a career development grant from the National Institute of Diabetes and Digestive and Kidney Diseases at the National Institute of Health ( K23DK103972 ). The funding organizations had no role in the design and conduct of the study; collection; management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript.
© 2018 International Society of Nephrology
- core outcome sets
- kidney disease
- patient-centered care