Rationale and objective: Patients with chronic kidney disease (CKD) are at an increased risk of premature death, cardiovascular disease, and burdensome symptoms that impair quality of life. We aimed to identify patient and caregiver priorities for outcomes in CKD.
Study design: Focus groups with nominal group technique SETTING: and Participants: Adult patients with CKD (all stages) and caregivers in the United States, Australia, and United Kingdom.
Analytical approach: Participants identified, ranked and discussed outcomes that were important during the stages of CKD prior to kidney replacement therapy. For each outcome, we calculated a mean importance score (scale 0-1). Qualitative data were analyzed using thematic analysis.
Results: Sixty-seven (54 patients, 13 caregivers) participated in 10 groups and identified 36 outcomes. The five top ranked outcomes for patients were: kidney function (importance score = 0.42), "end-stage kidney disease" (ESKD) (0.29), fatigue (0.26), mortality (0.25) and life participation (0.20); and for caregivers the top five outcomes were: life participation (importance score = 0.38), kidney function (0.37), mortality (0.23), fatigue (0.21) and anxiety (0.20). Blood pressure, cognition and depression were consistently ranked in the top ten outcomes across role (patient/caregiver), country and treatment stage. Five themes were identified: re-evaluating and reframing life, intensified kidney consciousness, battling unrelenting and debilitating burdens, dreading upheaval and constraints, and taboo and unspoken concerns.
Limitations: Only English-speaking participants were included CONCLUSIONS: Patients and caregivers gave highest priority to kidney function, mortality, fatigue, life participation, anxiety and depression. Consistent reporting of these outcomes in research may inform shared decision-making based on patient and caregiver priorities in CKD.
Copyright © 2020. Published by Elsevier Inc.