Health Literacy in CKD: A Fellow’s Perspective

Medical students and residents are often intimidated by renal physiology and struggle to understand the many aspects of the kidney’s role in medical disease. If trainees have trouble grasping the complexities of the kidney, it should come as no surprise that our patients feel the same way.

Health literacy, or the ability of an individual to be actively engaged in a dialogue about his health, has been linked to patient outcomes. Adequate health literacy is particularly important in chronic kidney disease (CKD), which often requires patients to navigate a complex health system and make drastic lifestyle changes. Patients may be faced with such critical decisions as choosing to begin renal replacement therapy with little to no understanding of its implications.

As a first-year Nephrology fellow, most of the patients I see are new to me as well as new to the clinic. I quickly realized that despite being referred to a clinic that exclusively sees patients with kidney disease, several of my patients were wholly unaware of having renal dysfunction in the first place. When I asked them what they had trouble understanding, they often replied with, “everything,” and didn’t know where to begin.

Clinical implications of low health literacy

The clinical implications of low health literacy in kidney disease are being recognized by the nephrology community. Lower health literacy has been linked to worsened glomerular filtration rates (1,2). Patients with CKD and poor health literacy tend to access preventive health services less frequently and have poorer self-care methods, all of which can contribute to rising healthcare costs. In addition, one study showed that patients on dialysis with limited health literacy were 78% less likely to be referred for a renal transplant (3).

Further complicating this matter, the Department of Education has reported that 21% of adults in the United States read below a fifth-grade level, and 14% of the population is illiterate. A study of kidney disease–related patient education tools from the United States, Australia, and the United Kingdom revealed that most materials required a ninth-grade reading level for adequate comprehension. In addition, many of these tools were geared toward those who had progressed to hemodialysis with little focus on patients with earlier stages of kidney disease (4). Low health literacy, a high pill burden, and an unfamiliar health system can be an overwhelming combination for a patient with kidney disease.

It is also important to realize that we as providers may fail to recognize existing health literacy issues that are downplayed out of fear or embarrassment. When I asked one of my patients to read back the medication instructions I had written for him, it was only when he held the paper upside down that I realized he could not read.

Table 1 provides a helpful list of patient characteristics that may be associated with low health literacy (5).


How can providers continue to address concerns about patient health literacy? Tools such as the Rapid Estimate of Adult Literacy in Medicine (REALM), Test of Functional Health Literacy in Adults (TOFHLA), and Brief Health Literacy Screen (BHLS) have all been used to successfully screen dialysis patients for poor health literacy (5,6), although studies regarding their effectiveness in earlier stages of kidney disease are lacking. In addition to using these tools, there are simple steps that we can take to help bridge the literacy gap between ourselves and our patients. We can ask open-ended questions, speak slowly with patient-oriented language, and limit the information we discuss at each visit. The “teach-back” method, or asking our patients to repeat back and explain any instructions given to them, can also be a useful tool to help confirm patient comprehension.

Patients with no medical background seem to know what it means to have heart disease and diabetes, but many still struggle with understanding the implications of kidney disease. Not only is it important to collaborate with educators and policy leaders to develop educational tools that provide simple representations of this complex disease process, it is also crucial to support health literacy training in the medical community. It is important that more of these efforts be geared toward patients during earlier stages of kidney disease as well as toward adolescents.

Each of us has a right to knowledge that informs decisions about our own health. It is our responsibility to ensure that this knowledge is delivered in a way that is both understandable and beneficial to our patients. Our health interventions are only as effective as our patients’ ability to carry them out—a challenge that we must continue to try to overcome with regard to kidney disease.


1. Devraj R, et al. Relationship between health literacy and kidney function. Nephrology 2015; 20:360–367.

2. Ricardo AC, et al. Limited health literacy is associated with low glomerular filtration in the Chronic Renal Insufficiency Cohort (CRIC) study. Clin Nephrol 2014; 81:30–37.

3. Grubbs V, Gregorich S, Perez-Stable EJ, Hsu C. Health literacy and access to kidney transplantation. Clin J Am Soc Nephrol 2009; 4:195–200.

4. Morony S, Flynn M, McCaffery KJ, Jansen J, Webster AC. Readability of written materials for CKD patients: a systematic review. Am J Kidney Dis 2015; 65:842.

5. Jain D, Green JA. Health literacy in kidney disease: Review of the literature and implications for clinical practice. World J Nephrol 2016; 5:147–151.

6. Dageforde LA, Cavanaugh KL. Health literacy: Emerging evidence and applications in kidney disease care. Adv Chronic Kidney Dis 2013; 20:311–319.

February 2017 (Vol 9, Number 2)