Standardised Outcomes in Nephrology – Chronic Kidney Disease (SONG-CKD): Establishing a core outcome set in chronic kidney disease

Abstract

The global median prevalence of chronic kidney disease (CKD) is estimated to be 9.5%.

Patients with CKD have an increased risk of progression to kidney failure requiring kidney replacement therapy in the form of dialysis or kidney transplant, life-threatening comorbidities, and impaired quality of life. Advances in care and outcomes may be limited, in part, by problems with the selection and reporting of outcomes in trials in CKD. The aim of the Standardised Outcomes in Nephrology – Chronic Kidney Disease (SONG-CKD) project is to establish a core outcome set for trials in adults with chronic kidney disease not yet requiring kidney replacement therapy. The core outcomes set will be based on the shared priorities of patients, caregivers, and health professionals. This will help to ensure that trials include outcomes that are of critical importance to all stakeholders to support shared decisionmaking.

The SONG-CKD projects included in this these are: focus groups with nominal group technique to identify and rank patient-important outcomes; interviews with clinicians in caring for patients with CKD; an international two-round Delphi survey to develop consensus among patients and caregivers to identify, rank, and describe reasons for their choice of outcomes; and two stakeholder workshops (in English and Spanish) to discuss and endorse the proposed core outcomes. The thesis also includes the report of the SONG-CKD Life participation workshop as this outcome was identified as a core patient-reported outcome. The SONG-CKD core outcome set will ultimately improve the evidence base for shared decisionmaking regarding treatment among patients, caregivers, and health professionals.