People living with chronic kidney disease (CKD) have been found to have low health literacy. This means that many people don’t understand the necessary information to make balanced health decisions. 

The language used by medical professionals to discuss kidney health with patients may be a part of the problem. Kidney health terminology can be vague, inconsistent, and even intimidating, and it can also be perceived differently by patients and doctors. 

Unfortunately, this can:

• prevent patients from seeking and understanding medical advice; 
• hinder decision-making regarding treatment and care; and
• negatively impact self-management and self-advocacy.

Low health literacy is linked to:

• Higher mortality and hospitalization 
• Lower access to treatment
• Poorer quality of life

To help correct this imbalance, researchers gathered focus groups made up of CKD patients and caregivers from the U.S., U.K., and Australia to get their input. Their findings were published in the Clinical Journal of the American Society of Nephrology.*

What they did

The participants were asked to respond to some of the most common terms and phrases used by medical professionals when discussing kidney health, including:

• Kidney vs. renal
• Chronic kidney disease 
• End-stage kidney disease (ESKD) 
• Kidney failure
• Descriptors for kidney function, such as eGFR, predialysis, and CKD stages. 

Regarding this list, participants were asked to:

• Identify terms that they perceived to be challenging 
• Explain what they understood these terms to mean, and describe the effects the terms had on them
• Suggest alternative terms for better receptivity and comprehension

What they found

Kidney vs. Renal

Most participants preferred the use of “kidney” instead of “renal,” as renal is not immediately familiar to most people. Unfamiliar, “medicalized” words were considered to be uninformative and, at times, intimidating. 

Chronic kidney disease (CKD)

Some patients were uncertain about the meaning of “chronic” and viewed it as:

• Confusing, “with no immediate translation into common usage” (The same was said about ‘nephrology’ and ‘acute’.)
• An indication that their situation could not improve and as a result felt helpless, powerless, and without hope 
• Too “severe” a term to use for patients in the early stages of the disease.

Some participants objected to the term “disease” as well. They stated that it gave them “false hope,” since they associated ‘disease’ with the existence, or at least possibility, of a cure.

End-stage kidney disease (ESKD)

Responses to “ESKD” were varied and included feelings that the term:

• Was “daunting” and “demoralizing,” generating anxiety and despair 
• Meant that death was at their front door and increased their sense of isolation 
• Was “damaging and painful,” but necessary for patients to grasp the seriousness of their situation and develop realistic expectations about the future
• Was outdated, because kidney replacement therapy (KRT) is available to prolong life

Though they didn’t like the term, some U.S. patients acknowledged that the use of ESKD may be necessary to access dialysis reimbursement from Medicare. Several participants suggested more gentle terminology, such as “kidneys are not functioning very well,” so patients would understand that their situation is “serious but…not the end of the road.” 

Kidney failure

“Kidney failure” was suggested as an alternative to “end-stage kidney disease,” because it seemed more “honest” and “you know that you can come back from that; there are options.” For some, however, the term “failure” felt like a negative label. It made them feel like they had “done something wrong,” and it damaged their self-esteem. Some claimed the term also caused them to feel depressed.

Descriptors for kidney function

GFR or eGFR

Participants found GFR terms and measures confusing when describing kidney function. They stated that numbers and percentages alone didn’t adequately communicate severity, and they suggested the use of “early, moderate, and advanced or lower, middle, and higher.”

Patients in the U.S. also noted that although there are differences in estimating GFR for Black people than for other racial and ethnic groups, the reason for those differences is rarely, if ever, explained.

Predialysis

Many participants disliked “predialysis,” because “it assumes you know what the future holds.” They also objected to it because some patients:

• could not obtain access to dialysis 
• may choose not to begin dialysis, and/or 
• have stable kidney function and may not be ready to consider KRT.

Some suggested that it might be “better to talk about the function that they do have than what might happen in the future.” There were others participants, though, who thought that, the term predialysis could act as a wake-up call to goal-oriented patients—motivating them to plan and make positive changes.

CKD stages

CKD stages were considered “vague” and not useful if patients were already in the final stage by the time they got diagnosed. Some participants realized that the length of the CKD stages are not uniform or predictable, but many felt that terms used to describe the stages would be more useful if they were linked to “different stages of treatment” and indicated when they might require medications, dialysis, and kidney transplants. 

What does it mean?

Overall, participants urged the use of simple, clear, accessible terms that they, in turn, can use to educate their families and social networks. They believed that the language used by healthcare providers should enable understanding of:

• their level of kidney function 
• how this compared with normal function, and 
• disease progression. 

Many still felt that, while the technical terms could be “intimidating,” patients have a responsibility to learn the language for the sake of empowerment and urged them to ask their doctors to explain any terms they don’t understand. 

*Tong, A., Levey, A.S., Eckardt, K., Anumudu, S., et al. (2020, July 1). Patient and Caregiver Perspectives on Terms Used to Describe Kidney Health. Clinical Journal of the American Society of Nephrology. https://cjasn.asnjournals.org/content/15/7/937.long