Kidney disease health literacy among new patients referred to a nephrology outpatient clinic

BACKGROUND: Knowledge about kidney disease among the general population is poor but has not been assessed in the population selected for referral to nephrology care. AIM: This study aimed to determine patients' understanding of chronic kidney disease (CKD) when first presenting to a nephrology clinic. METHODS: Newly referred patients to a nephrology clinic were surveyed with open-ended questions about their understanding of CKD causes, symptoms and management. RESULTS: Two hundred and ten patients were surveyed. Median age was 66.5 years (interquartile range 52-77), 50.5% female and mean body mass index 29.7 ± 6.8 kg/m(2) . Prevalence of risk factors for CKD included 31% diabetic, 62% hypertension, 19% family history of CKD and 2% Aboriginal or Torres Strait Islander. CKD stage prevalence was 0 (8%), 1 (24%), 2 (11%), 3 (38.5%), 4 (18%) and 5 (0.5%). Eighty-two per cent were referred by their primary care physician and 29% had seen a nephrologist previously. Kidney Health Australia was mentioned by 2.4%. Sixteen per cent were unsure why they had been referred. CKD causes identified by patients were unsure (40%), alcohol (29%), hypertension (16%) and diabetes (14%). Symptoms identified included asymptomatic (16%), kidney pain (17%) and other (42%). Management suggested by patients was uncertain (51%), dialysis (32%) and anti-hypertensive medication (16%). Eighty-two per cent reported unsatisfactory education from their primary care physician. CONCLUSIONS: New patients referred to a renal outpatient department had poor knowledge about kidney disease. Education of patients should begin in primary care prior to referral. For most patients, education programmes need to be targeted at a simplistic level.