Patient and caregiver priorities for outcomes in CKD: a multinational nominal group technique study.
File(s)Gonzalez et al, AJKD 2020 Fig 2.pdf (34.17 KB) Gonzalez et al, AJKD 2020 clean manuscript.docx (90.36 KB)
Supporting information
Accepted version
Author(s)
Type
Journal Article
Abstract
RATIONALE & OBJECTIVE: Patients with chronic kidney disease (CKD) are at an increased risk for 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 & 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 before kidney replacement therapy. For each outcome, we calculated a mean importance score (scale, 0-1). Qualitative data were analyzed using thematic analysis. RESULTS: 67 (54 patients, 13 caregivers) participated in 10 groups and identified 36 outcomes. The 5 top-ranked outcomes for patients were kidney function (importance score, 0.42), end-stage kidney disease (0.29), fatigue (0.26), mortality (0.25), and life participation (0.20); and for caregivers, the top 5 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 10 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.
Date Issued
2020-11
Date Acceptance
2020-03-21
Citation
American Journal of Kidney Diseases, 2020, 76 (5), pp.679-689
ISSN
0272-6386
Publisher
Elsevier
Start Page
679
End Page
689
Journal / Book Title
American Journal of Kidney Diseases
Volume
76
Issue
5
Copyright Statement
© 2020 Published by Elsevier Inc. on behalf of the National Kidney Foundation, Inc. This manuscript is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International Licence http://creativecommons.org/licenses/by-nc-nd/4.0/
Identifier
https://www.ncbi.nlm.nih.gov/pubmed/32492463
PII: S0272-6386(20)30719-8
Subjects
Chronic kidney disease (CKD)
anxiety
caregivers
core outcome sets
end-stage renal disease (ESRD)
fatigue
life participation
mortality
nephrology trial design
patient-centered care
patient-reported outcomes
patients
qualitative research
renal function
research objectives
shared decision-making
Publication Status
Published
Coverage Spatial
United States
Date Publish Online
2020-05-31