Chronic kidney disease patients claim to know nothing about their condition

A study by Finkelstein and colleagues published recently in Kidney International has found that as many of a third of patients with chronic kidney disease (CKD) claim to know nothing about their disease or about their treatment options when their kidneys ultimately fail.

CKD encompasses many types of kidney damage and is characterized by the gradual loss of renal function, often with few symptoms bar raised blood pressure and nonspecific signs such as fatigue and reduced appetite. CKD is graded on a 5-point scale, with stage 1 being slightly diminished kidney function and stage 5 being established kidney failure. Despite treatment many cases progress, in some instances to the point of kidney failure, otherwise known as end-stage renal disease. Once a patient reaches end-stage renal disease, they have to regularly undergo life-saving treatment that mimics the roles performed by their now defunct kidneys. Some such treatments include dialysis and kidney transplantation.

In the study by Finkelstein et al., 676 patients with stage 3–5 CKD who had been receiving nephrology care for about 5 years completed a questionnaire to assess their knowledge of CKD and of renal replacement therapies. Only 23% of patients reported having a great deal or extensive knowledge about their CKD and 35% reported having very limited or no knowledge. When questioned about their knowledge of renal replacement therapy, 35% of patients reported knowing nothing about any end-stage renal disease treatment modality.

Various studies have shown that decent education about CKD can delay the onset renal failure, increase the likelihood of the patient choosing a less costly home-based therapy rather than elaborate hospital-based dialysis, and improve outcomes of patients after the start of dialysis.

The findings of the Finkelstein et al. study indicate that despite receiving specialized kidney care for several years, many patients with CKD feel they have little knowledge of their disease and are, therefore, ill equipped to make treatment decisions. In an editorial accompanying the research, Chester Fox and Linda Kohn of University at Buffalo, New York, suggest that, "A multidisciplinary team - including dieticians, social workers, nurse educators, and pharmacists - and access to transplant surgeons are necessary to improve patient knowledge and understanding about progression of CKD and treatment options."

Finkelstein FO et al. (2008). Perceived knowledge among patients cared for by nephrologists about chronic kidney disease and end-stage renal disease therapies Kidney International 74 (9): 1178-1184 DOI: 10.1038/ki.2008.376
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Another recent study, this time published in Archives of Internal Medicine, measured whether the introduction of early detection guidelines had improved the number of patients with CKD who were aware that they had the disease. The authors specifically asked 2,992 patients with stage 1-4 CKD whether or not they had been told that they had weak or failing kidneys. Between 1999 and 2004, awareness improved only in patients with stage 3 CKD. Patients with risk factors for CKD such as diabetes or hypertension were most likely to be aware of their disease.