Abstract: FR-PO336
Eliciting Patient and Caregiver Priority Outcomes in CKD: An International Nominal Group Study
Session Information
- CKD: Clinical, Outcomes, Trials - II
November 08, 2019 | Location: Exhibit Hall, Walter E. Washington Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: CKD (Non-Dialysis)
- 2102 CKD (Non-Dialysis): Clinical, Outcomes, and Trials
Authors
- Gutman, Talia M., University of Sydney, Sydney, New South Wales, Australia
- Craig, Jonathan C., Flinders University, Adelaide, South Australia, Australia
- Scholes-Robertson, Nicole Jane, University of Sydney, Sydney, New South Wales, Australia
- Tong, Allison, University of Sydney, Sydney, New South Wales, Australia
Group or Team Name
- Standardised Outcomes in Nephrology (SONG) Initiative - Chronic Kidney Disease
Background
Patients with chronic kidney disease (CKD) are at an increased risk of premature death and cardiovascular disease, and experience symptoms that impair quality of life. We aimed to identify patient and caregiver priority outcomes in CKD.
Methods
Patients with CKD (stages 1-5, dialysis or transplant) and caregivers were purposively sampled from seven centers (10 groups) across United States, Australia, and United Kingdom. Participants identified outcomes that were important in CKD Stages 1-5 (prior to commencing kidney replacement therapy (KRT)) and individually ranked their top 10 from most important to least important. A relative importance score (0 to 1) was calculated for each outcome based on frequency and rank.
Results
In total, 54 patients and 13 caregivers aged over 18 years participated, with 36 outcomes identified. The five top ranked outcomes for patients were: kidney function (importance score = 0.42; 95%CI 0.31-0.53), end stage kidney disease (0.29; 0.21-0.38), fatigue (0.26; 0.19-0.35), mortality (0.25; 0.17-0.35) and life participation (0.20; 0.14-0.27). For caregivers the top five outcomes were: life participation (0.38; 0.19 -0.59), kidney function (0.37; 0.18-0.59), mortality (0.23; 0.07-0.45), fatigue (0.21; 0.10-0.37) and anxiety (0.20; 0.08-0.35). Blood pressure, cognition and depression were consistently ranked in the top ten outcomes across role (patient/caregiver), country and stage of CKD (CKD vs KRT).
Conclusion
Patients and caregivers gave highest priority to kidney health, mortality, fatigue, life participation, and mental wellbeing. Consistent reporting of these outcomes in research can inform shared decision-making based on outcomes that are relevant and critical to patients and caregivers in CKD.
Figure 1. Top ranked outcomes by role