Measuring Disease and Transplant Knowledge among Patients with Advanced CKD Tools to Increase Access and Advance Equity

• Type of Material: Article
• Authors: Megan Urbanski, Emory University; Rachel Patzer, Emory University
• Language: English
• Date: 2022-03-24
• Publisher: AMER SOC NEPHROLOGY
• Publication Version: Final Published Version
• Copyright Statement: © 2022 by the American Society of Nephrology
• License: Creative Commons Attribution 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.2215/CJN.02140222
• Title of Journal or Parent Work: CLINICAL JOURNAL OF THE AMERICAN SOCIETY OF NEPHROLOGY
• Volume: 17
• Issue: 4
• Start Page: 481
• End Page: 483
• Grant/Funding Information: M.A. Urbanski is supported by Georgia Clinical and Translational Science Alliance grant TL1TR002382.
• Keywords: knowledge; Science & Technology; Urology & Nephrology; Life Sciences & Biomedicine; measurement; kidney transplantation; equity; advanced CKD

Abstract

Despite multiple national policy directives aimed at reducing disparities in kidney disease, inequities in the provision of care and access to optimal treatment stubbornly persist for CKD and kidney failure populations in the United States. Disease awareness remains low, with only 17% of patients with CKD stage 3 aware of their kidney disease (1); with approximately one third of patients with no or unknown nephrology care prior to commencing KRT (1); and with access to kidney transplantation, the preferred treatment for advanced CKD and kidney failure (2), remaining elusive for the majority of patients in need. Patient acquisition of knowledge of their illness and kidney transplant is arguably the first step in the complex journey toward obtaining a transplant. Research has documented important associations between lack of knowledge about kidney disease and treatment options with reduced access to care and poor outcomes (3,4)—as well as evidence of improvements in access to transplant when patients have access to comprehensive transplant education (5). To date, few measurement tools have been developed and validated in the CKD and kidney failure populations (6–9). In addition, there is no national assessment of knowledge about disease and treatment options among patients to assess deficits that may need to be addressed to ensure equity in access to information critical to pursuing treatment.