Identifying outcomes important to patients with glomerular disease and their caregivers
File(s)
Accepted version
Author(s)
Type
Journal Article
Abstract
BACKGROUND AND OBJECTIVES: Shared decision making in patients with glomerular disease remains challenging because outcomes important to patients remain largely unknown. We aimed to identify and prioritize outcomes important to patients and caregivers and to describe reasons for their choices. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We purposively sampled adult patients with glomerular disease and their caregivers from Australia, Hong Kong, the United Kingdom, and the United States. Participants identified, discussed, and ranked outcomes in focus groups using the nominal group technique; a relative importance score (between zero and one) was calculated. Qualitative data were analyzed thematically. RESULTS: Across 16 focus groups, 134 participants (range, 19-85 years old; 51% women), including 101 patients and 33 caregivers, identified 58 outcomes. The ten highest-ranked outcomes were kidney function (importance score of 0.42), mortality (0.29), need for dialysis or transplant (0.22), life participation (0.18), fatigue (0.17), anxiety (0.13), family impact (0.12), infection and immunity (0.12), ability to work (0.11), and BP (0.11). Three themes explained the reasons for these rankings: constraining day-to-day experience, impaired agency and control over health, and threats to future health and family. CONCLUSIONS: Patients with glomerular disease and their caregivers highly prioritize kidney health and survival, but they also prioritize life participation, fatigue, anxiety, and family impact.
Date Issued
2020-05-07
Date Acceptance
2020-03-26
Citation
Clinical Journal of the American Society of Nephrology, 2020, 15 (5), pp.673-684
ISSN
1555-9041
Publisher
American Society of Nephrology
Start Page
673
End Page
684
Journal / Book Title
Clinical Journal of the American Society of Nephrology
Volume
15
Issue
5
Copyright Statement
© 2020 by the American Society of Nephrology
Identifier
https://www.ncbi.nlm.nih.gov/pubmed/32354728
PII: CJN.13101019
Subjects
Anxiety
Blood Pressure Determination
Caregivers
Data Accuracy
Decision Making
Family Relations
Fatigue
Focus Groups
Infections
Shared
blood pressure
renal dialysis
Publication Status
Published online
Coverage Spatial
United States
Date Publish Online
2020-04-30