Perceived and Objective Kidney Disease Knowledge in Patients With Advanced CKD Followed in a Multidisciplinary CKD Clinic

BACKGROUND: One of the key components of multidisciplinary CKD clinics is education; however, kidney disease knowledge among patients followed in these clinics is not routinely measured. OBJECTIVE: The aim of this study was to determine objective and perceived kidney disease knowledge and patient characteristics associated with knowledge among patients followed in a multi-care kidney clinic. DESIGN: This is a cross-sectional survey study. SETTING: This study was conducted in a multi-care kidney clinic in Ontario, Canada. PATIENTS: Patients who did not speak English, who were unable to read due to significant vision impairment, or who had a known history of dementia or significant cognitive impairment were excluded. MEASUREMENTS: Perceived kidney disease knowledge was evaluated using a previously validated 9-item survey (PiKS). Each question on the perceived knowledge survey had 4 possible responses, ranging from “I don’t know anything” (1) to “I know a lot” (4). Objective kidney disease knowledge was evaluated using a previously validated survey (KiKS). METHODS: The association between patient characteristics and perceived and objective kidney disease knowledge was determined using linear regression. RESULTS: A total of 125 patients were included, 57% were male, the mean (SD) age and eGFR were 66 (13) years and 16 (5.9) mL/min/1.73 m(2), respectively. The median (IQR) objective and perceived knowledge survey scores were 19 out of 27 (16, 21) and 2.9 out of 4 (2.4, 3.2), respectively. Only 25% of patients answered correctly that CKD can be associated with no symptoms, and 64% of patients identified correctly that the kidneys make urine. More than 60% of patients perceived themselves to know nothing or only a little about medications that help or hurt the kidney. Older age was independently associated with lower perceived and objective knowledge, but sex, income, and educational attainment were not. LIMITATIONS: This is a single-center study. Cognitive impairment was based on the treating team’s informal assessment or prior documentation in the chart; formal cognitive testing was not performed as part of this study. CONCLUSIONS: Despite resource-intensive care, CKD knowledge of patients followed in a multidisciplinary clinic was found to be modest. Whether enhanced educational strategies can improve knowledge and whether increasing knowledge improves patient outcomes warrants further study.