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Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers.
- Source :
-
Clinical journal of the American Society of Nephrology : CJASN [Clin J Am Soc Nephrol] 2020 May 07; Vol. 15 (5), pp. 673-684. Date of Electronic Publication: 2020 Apr 30. - Publication Year :
- 2020
-
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.<br />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.<br />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.<br />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.<br /> (Copyright © 2020 by the American Society of Nephrology.)
- Subjects :
- Adult
Aged
Aged, 80 and over
Australia
Decision Making, Shared
Female
Focus Groups
Functional Status
Glomerulonephritis diagnosis
Glomerulonephritis physiopathology
Glomerulonephritis psychology
Health Knowledge, Attitudes, Practice
Health Status
Hong Kong
Humans
Male
Mental Health
Middle Aged
Prognosis
Qualitative Research
Quality of Life
United Kingdom
United States
Young Adult
Caregivers
Glomerulonephritis therapy
Patient Reported Outcome Measures
Subjects
Details
- Language :
- English
- ISSN :
- 1555-905X
- Volume :
- 15
- Issue :
- 5
- Database :
- MEDLINE
- Journal :
- Clinical journal of the American Society of Nephrology : CJASN
- Publication Type :
- Academic Journal
- Accession number :
- 32354728
- Full Text :
- https://doi.org/10.2215/CJN.13101019