Patients Misconstrue Terms Clinicians Use to Discuss Kidney Health

By Lisa Rappaport

July 01, 2020

(Reuters Health) - Many patients may not understand terms like "end-stage kidney disease," which adds to their distress and even trauma when discussing renal health with clinicians, a small study suggests.

Researchers conducted focus groups with 54 patients with chronic kidney disease and 13 family caregivers from Australia, the UK and U.S. The goal of focus groups was to determine how well participants understood, and how they felt when they heard, a variety of terms related to their diagnosis including: kidney, renal, chronic kidney disease (CKD), end-stage kidney disease, kidney failure, and descriptors for kidney function.

"We know that the terms used to describe kidney health are inconsistent, difficult to understand and conceptualized differently by patients and clinicians," said lead study author Allison Tong of the University of Sydney in Australia.

"However, there is very little known about how patients define and interpret these terms, and their impact," Tong said by email.

Patients in the two-hour focus groups were aged 18 and older. They had stage 1 to 5 CKD, were receiving dialysis, or had received a kidney transplant. All of the focus groups were conducted from March to May 2019.

One theme that emerged was what researchers described as fear of the unknown. Focus group participants said that terms that were obscure or had a negative connotation made them feel scared or feel like their diagnosis was fatal.

In particular, participants said that the term "end stage" with other conditions like cancer or cardiovascular disease indicated that patients had no options left, a short time to live, or needed to consider palliative care. While clinicians know that people can live a long time with end stage kidney disease, the study participants didn't get this impression.

Another theme that came up from the focus groups was participants' frustration with terminology they found confusing or misleading.

For example, many participants didn't know the definition of "renal," and one person thought this word referred to "the whole system, the bladder," as opposed to the kidney, which the person thought was one organ within the renal system.

Participants also didn't know the difference between "chronic" and "acute" kidney disease or understand terms like "low clearance" or "nephrology," the focus groups found.

A third theme in the focus groups was confusion around prognosis. Patients didn't understand stages of CKD, and wished that these descriptions could make it clearer whether their condition was early, or advanced, or whether the severity was mild or high, to make it clearer what the prognosis might be.

Similarly, patients didn't understand GFR values, and didn't understand whether eGFR over 60 was good or bad, or what would be considered the best value.

Patients also wanted clearer terminology to describe what type of interventions they might need in the future, and where their particular prognosis stood on a trajectory toward possible interventions like medications, dialysis, or a transplant.

One last theme that came up in focus groups was that, for some patients and caregivers, existing terminology that made them feel scared about their future also motivated them to take actions to support their own health and to have realistic expectations about their prognosis.

Overall, the outcomes of these focus groups highlight the need to rethink terminology used to talk to patients so that they can better understand their circumstances, the study team writes in CJASN.

"Our findings show that poor communication can provoke and cause profound trauma, despair, and frustration in patients with chronic kidney disease and their family - which may remain unspoken, unresolved, and underrecognized," Tong said. "This can impair their ability to accept and manage their condition and to make decisions about their care."

Doctors need patients to be engaged in order to manage kidney disease, said Paul Conway author of an editorial accompanying the study and chair of policy and global affairs at the American Association of Kidney Patients.

"Without knowing your patient and their aspirations before you speak, you will never know if you have instilled optimism and confidence or if you have thrown a patient into disarray that leads to resignation, lack of engagement in their care, lack of compliance or fatalism - with serious consequences for caregiver burden and family members," Conway said by email.

SOURCE: and CJASN, online June 25, 2020.