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Implementing core outcomes in kidney disease: report of the Standardized Outcomes in Nephrology (SONG) implementation
Allison Tong1, Braden Manns2, Angela Yee Moon Wang3
1The University of Sydney School of Public Health, Sydney, New South Wales, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.
Abstract:
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.
Insights
Standardized Outcomes in Nephrology (SONG) identified core outcomes critical for patients and professionals in chronic kidney disease trials. Implementation strategies were discussed to ensure consistent reporting and improve patient-important outcomes.
Area of Science:
- Nephrology
- Clinical Trials
- Patient-Reported Outcomes
Background:
- Chronic kidney disease research features numerous trials, but often prioritizes biochemical markers over patient-centered outcomes like cardiovascular disease, mortality, and quality of life.
- Outcome heterogeneity in kidney disease trials limits their impact on clinical practice and health policy.
- The Standardized Outcomes in Nephrology (SONG) Initiative aims to establish consensus on core outcomes vital for patients and clinicians.
Framework:
- The SONG Initiative focuses on identifying and promoting the consistent reporting of patient-important outcomes in nephrology research.
- Core outcomes are defined as those critically important to patients and health professionals.
Implementation:
- A SONG Implementation Workshop convened 82 patients, caregivers, and health professionals to discuss core outcome implementation.
- Key themes included socializing the concept of core outcomes and demonstrating their feasibility and usability in trials.
- Strategies for stakeholder partnership were outlined to enhance acceptance and reporting.
Implications:
- Successful implementation of core outcomes can improve the relevance and impact of chronic kidney disease trials.
- Consistent reporting of patient-important outcomes can inform guideline development and health policy.
- Adoption of SONG recommendations may lead to better patient outcomes in nephrology.
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