Why does quality of life remain an under-investigated issue in chronic kidney disease and why is it rarely set as an outcome measure in trials in this population?
Open accessAbstract
The growing importance of quality of life (QoL) measures in health care is reflected by the increased volume and rigor of published research on this topic. The ability to measure and assess patients' experience of symptoms and functions has transformed the development of disease treatments and interventions. However, QoL remains an under-investigated issue in chronic kidney disease (CKD) and is seldom set as an outcome measure in trials in this population. In this article, we present various challenges in using patient-reported outcome (PRO) end points in CKD trials. We outline the need for additional research to examine more closely patient experiences with specific kidney disease symptoms and conditions, as well as caregiver perspectives of patients' symptom burden and end-of-life experiences. These efforts will better guide the development or enhancement of PRO instruments that can be used in clinical trials to more effectively assess treatment benefit, and improve therapy and care. Better understanding of health-related QoL issues would enable providers to deliver more patient-centered care and improve the overall well-being of patients. Even small improvements in QoL could have a large impact on the population's overall health and disease burden.
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The quality of life of patients with ROD is lower than for the general population in three key areas: physical limitations, social isolation and stigmatization, and emotional distress.
“The quality of life of patients with ROD is lower than for the general population in three key areas: physical limitations (movements, pain, sleep problems, attention or concentration problems that affect daily life), [3–9], social isolation and stigmatization [3, 7, 9–13], and emotional distress (anger, depression, anxiety, hopelessness, loss, lack of control, abandonment) [3, 5, 8, 14–17].”
From Connect-ROD – development and qualitative evaluation of a community-based group intervention to support well-being in patients with a rare or orphan disease (2024) · cites this paper as [6]
In “Non-disease-based outcomes as primary end points” (page unavailable), the paper reports lower health-related quality of life in CKD patients than in matched controls and identifies pain, sleep disturbances, cognitive difficulties and depression as relevant symptoms. It does not establish these findings specifically for patients with ROD or identify social isolation and stigmatization as areas of reduced quality of life. (LLM, conf=0.86)
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References 62 · Cited by 42
- Authors
- Chong, K., & Unruh, M.
- Affiliations
- University of New Mexico (US)
- Venue
- Nephrology Dialysis Transplantation
- Publisher
- Oxford University Press (OUP)
- Published
- 2017-02-16
- Volume
- 32
- Issue
- suppl_2
- Pages
- ii47-ii52
- ISSN
- 0931-0509 (ISSN-L)
- 1460-2385
- OpenAlex
- W2587820367
- Cited by
- 42
- References
- 62
- Citations by year
- 2026: 2 · 2025: 2 · 2024: 5 · 2023: 1 · 2022: 7 · 2021: 5 · 2020: 6 · 2019: 4 · 2018: 9 · 2017: 1
- FWCI
- 4.90
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Nephrology Dialysis Transplantation (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Nephrology › Dialysis and Renal Disease Management
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Health Sciences › Medicine › Nephrology › Chronic Kidney Disease and Diabetes
- Keywords
- quality of life, chronic kidney disease, patient-reported outcomes, symptom burden, end-of-life care, caregiver perspectives, patient-centered care, health-related quality of life
- MeSH terms
- Patient Reported Outcome Measures, Humans, Quality of Life, Caregivers, Outcome Assessment, Health Care, Patient-Centered Care, Renal Insufficiency, Chronic, Symptom Assessment
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