A Mixed-Methods Study of How Older Adults with Advanced CKD Perceive Kidney Failure Risk

Older adults with chronic kidney disease (CKD) underestimate their kidney failure risk, which threatens timely dialysis decision-making. Cognitive biases are reversible thinking patterns that distort risk perception. We tested how cognitive biases may impact risk perception in CKD and explored participants' risk communication preferences.

We conducted a sequential, explanatory mixed-methods study in adults over 60 with Stage 3B-5 CKD. We quantified objective (Kidney Failure Risk Equation) vs. perceived kidney failure risk, cognitive biases (present bias, loss aversion, optimism bias), frailty (Physical Frailty Phenotype), cognition (Montreal Cognitive Assessment), Patient Activation (PAM-13), depressive symptoms (Quick Inventory of Depressive Symptomatology Self Report-16), and numeracy (Subjective Numeracy Scale). We tested for associations between these factors and concordance between objective vs. perceived risk. Participants underestimating objective kidney failure risk were interviewed alongside caregivers.

Only 24% of participants reported prognostic concordance. Participants with high objective risk who also perceived their risk as 'high' (concordance) reported more loss aversion than those who perceived their risk as 'low' (88% vs. 54%; p< 0.05). In a multivariable model restricted to participants with complete data (N=167), higher Patient Activation was independently associated with lower odds of prognostic uncertainty (Odds Ratio 0.66; 95% Confidence Interval 0.44-0.99). Thirty-eight participants who underestimated their objective risk and 27 caregivers expanded on their cognitive biases, described fatalistic beliefs, and caregiver burnout. Participants described having less prognostic knowledge than caregivers. Participants recommended clinicians use hopeful language, involve caregivers and spiritual leaders in prognostic discussions, acknowledge their numeracy, and apply real-time uremic symptom monitoring to improve risk awareness.

Older adults with CKD had discordance between objective and perceived kidney failure risk. Nephrology clinicians can query patients' cognitive biases to examine their impact on risk perception and apply key information delivery methods when communicating kidney failure risk.