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Last updated on April 24, 2014 at 16:01 EDT

Your Knowledge Could Impact Organ Donation

December 3, 2008

Kidney disease patients’ ability to understand basic health information may have a significant impact on whether or not they will receive an organ transplant, according to a study appearing in the January 2009 issue of the Clinical Journal of the American Society Nephrology (CJASN). The findings reveal an important disparity in access to care and point to the need for more standardized procedures for referring patients for transplantation.

Research has shown that people with poor health literacy have more difficulty understanding written health materials, processing oral instructions, and navigating health care environments than those with sufficient health literacy. The ability to obtain and understand health information to make appropriate health decisions may be particularly important for patients with chronic kidney disease (CKD), because preparing for kidney transplantation requires undergoing several steps, including keeping a number of appointments at different locations and following complicated instructions for several tests.

Few studies have examined health literacy among patients with CKD to see if it has an impact on care. To investigate the issue, Vanessa Grubbs, MD, of the University of California, San Francisco and her colleagues Steven E. Gregorich, MD, Eliseo J. Perez-Stable, MD, and Chi-yuan Hsu, MD, measured the health literacy of 62 dialysis patients aged 18 to 75 years and documented which patients were referred for a kidney transplant evaluation and which were placed on a kidney transplant wait list.

The researchers found that roughly one-third of patients had inadequate health literacy. Approximately three-quarters of the patients in the study were referred for a kidney transplant evaluation, 85% of whom were then wait-listed. Patients with inadequate health literacy were 78% less likely than patients with adequate health literacy to be referred for a transplant evaluation. Once patients were referred for transplant evaluation, health literacy level did not appear to affect who was put on a transplant wait list. However, it took slightly longer for patients with inadequate health literacy to be put on a wait list than patients with adequate health literacy (3.6 months vs 2.1 months).

The link between inadequate health literacy and lower likelihood of being referred for transplant evaluation may be due to various factors. For example, physicians may be less willing to refer patients who are perceived as less equipped to follow through with instructions that are important for maintaining the health of a transplanted kidney. Alternatively, certain health complications or patient uncertainties may play a role.

The authors concluded that inadequate health literacy is common among dialysis patients and can keep patients from being referred for a transplant evaluation. “Strategies to reduce the impact of health literacy on the kidney transplant process should be explored,” they recommended.

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