Abstract
Background
Patients approaching kidney failure are increasingly older, and living with multiple long-term conditions. The benefits of kidney replacement therapy (KRT) are uncertain for many in this group. Supporting decisions between treatment options requires consideration of how people perceive chronic kidney disease and its treatments. This qualitative study aimed to explore how older patients and family members understand kidney function and failure, and how this impacts treatment decision-making.
Methods
Between September 2018 and July 2019, semi-structured interviews were conducted with older patients and family members recruited from three United Kingdom kidney units. Eligible patients had estimated glomerular filtration rate (eGFR) < 15 ml/min/1.73m2, no previous KRT and were age ≥ 80 years, or ≥ 65 years with significant comorbidity. Interviews used a topic guide developed with patient input. Interview transcripts were analysed using inductive thematic analysis and constant comparative techniques.
Results
Fifteen patients and 12 family members were interviewed. Three themes were identified: (i) Critical blood-cleaning organs, where kidney function was considered vital for survival; (ii) Unwitnessed function and failure, where kidney disease was experienced invisibly; and (iii) Quantifying and predicting kidney function, including conceptualisation of kidney function using numbers and graphs. Unwitnessed, intangible experiences of kidney failure appeared to accentuate reliance on clinicians for disease information. Numerical and graphical depictions of kidney function were central to formation of disease understanding. Concepts of treatment ‘thresholds’ appeared to affirm misperceptions of a binary choice between dialysis and death.
Conclusions
Unintended misunderstandings, including eGFR thresholds for dialysis initiation, arise from common clinical communication approaches and appear to impact upon informed decision-making. This is especially important for older patients with multiple conditions, for whom the benefits of dialysis are uncertain. Improved consultation approaches which enhance patient understanding are needed. Revising misleading terminology and shifting focus away from numerical disease metrics may help patients and families making individualised choices between treatments.
Patients approaching kidney failure are increasingly older, and living with multiple long-term conditions. The benefits of kidney replacement therapy (KRT) are uncertain for many in this group. Supporting decisions between treatment options requires consideration of how people perceive chronic kidney disease and its treatments. This qualitative study aimed to explore how older patients and family members understand kidney function and failure, and how this impacts treatment decision-making.
Methods
Between September 2018 and July 2019, semi-structured interviews were conducted with older patients and family members recruited from three United Kingdom kidney units. Eligible patients had estimated glomerular filtration rate (eGFR) < 15 ml/min/1.73m2, no previous KRT and were age ≥ 80 years, or ≥ 65 years with significant comorbidity. Interviews used a topic guide developed with patient input. Interview transcripts were analysed using inductive thematic analysis and constant comparative techniques.
Results
Fifteen patients and 12 family members were interviewed. Three themes were identified: (i) Critical blood-cleaning organs, where kidney function was considered vital for survival; (ii) Unwitnessed function and failure, where kidney disease was experienced invisibly; and (iii) Quantifying and predicting kidney function, including conceptualisation of kidney function using numbers and graphs. Unwitnessed, intangible experiences of kidney failure appeared to accentuate reliance on clinicians for disease information. Numerical and graphical depictions of kidney function were central to formation of disease understanding. Concepts of treatment ‘thresholds’ appeared to affirm misperceptions of a binary choice between dialysis and death.
Conclusions
Unintended misunderstandings, including eGFR thresholds for dialysis initiation, arise from common clinical communication approaches and appear to impact upon informed decision-making. This is especially important for older patients with multiple conditions, for whom the benefits of dialysis are uncertain. Improved consultation approaches which enhance patient understanding are needed. Revising misleading terminology and shifting focus away from numerical disease metrics may help patients and families making individualised choices between treatments.
| Original language | English |
|---|---|
| Number of pages | 12 |
| Journal | BMC Nephrology |
| Volume | 613 (2025) |
| DOIs | |
| Publication status | Published - 4 Nov 2025 |
Data Availability Statement
Raw interview data is potentially identifiable so is not made available. Please contact the corresponding author for further details.Acknowledgements
The authors would like to thank all the staff working in the three recruiting kidney units and the patients and family members who invited us into their lives and homes to learn about their experiences of kidney disease. The authors would also like to acknowledge the members of the patient and public involvement group for their valuable input.Funding
This study was supported by the NIHR Biomedical Research Centre at University Hospitals Bristol and Weston NHS Foundation Trust and represents independent research sponsored by the University of Bristol. The views expressed are those of the author(s), conducted as part of an NIHR Doctoral Research Fellowship (DRF-2017-10-127), and not necessarily those of the NIHR or the Department of Health and Social Care. LS, NIHR Career Development Fellow (CDF-2018-11-ST2-009) was funded by the NIHR for this research project.
| Funders | Funder number |
|---|---|
| National Institute for Health and Care Research |
Keywords
- Age
- Renal insufficiency
- Kidney failure, chronic
- Chronic kidney disease
- Conservative kidney management
- Decision making
- shared
- Dialysis
- Multimorbidity