Patient kidney disease knowledge remains inadequate with standard nephrology outpatient care

BACKGROUND: Chronic kidney disease (CKD) knowledge among patients newly referred to a nephrology clinic is limited. This study aimed to determine if CKD knowledge 1 year after initial consultation in a nephrology clinic improves with standard care. METHODS: Patients newly referred to a nephrology outpatient clinic received standard care from nephrologists, and had access to educational pamphlets, relevant internet sites and patient support groups. Those with estimated glomerular filtration rate <20 mL/min/1.73 m(2) received individual education from a multi-disciplinary team. Knowledge was assessed by questionnaire at first visit and after 12 months. RESULTS: Of 210 patients at baseline, follow-up data were available at 12.7 (±1.7) months for 95. Median age was 70 [interquartile range (IQR) 60–76] years and 54% were male. Baseline median creatinine of the follow-up cohort was 137 (IQR 99–179) µmol/L. Eighty per cent had seen a nephrologist at least three times, 8% saw a CKD nurse, 50% reported collecting pamphlets and 16% reported searching the internet. At 12 months, fewer patients reported being uncertain why they had been referred (5 versus 20%, P = 0.002) and fewer reported being unsure of the meaning of CKD (37 versus 57%, P = 0.005). Unknown (44%) and alcohol (23%) remained the most common causes of CKD identified. Fewer patients responded ‘unsure’ regarding the treatment of CKD (38 versus 57%, P = 0.004). CONCLUSIONS: After a year of standard care at nephrology outpatient clinics there were some minor improvements in patient knowledge; however, patient understanding of CKD remained poor.