How Do Older Patients With Advanced Kidney Disease, and Their Family Members, Understand Kidney Function and Failure? A Qualitative Study

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) 2, 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; 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.