More than 30 million adults in the United States are affected by CKD, but studies during the past 10-15 years indicate that CKD awareness is suboptimal. “Patient awareness of CKD is a critical first step toward engaging in medical treatment and self-care to delay disease progression and prevent complications,” says Chi D. Chu, MD, MAS. “Unfortunately, previous research on CKD awareness has used differently worded questions to describe kidney disease when ascertaining awareness, such as asking about ‘a kidney problem,’ ‘kidney disease,’ or ‘weak or failing kidneys.’ Also, these studies have been conducted in differing population-based or healthcare settings.”

For a study published in Kidney Medicine, Dr. Chu and colleagues examined the current state of CKD awareness and investigated the impact of question wording and patient setting on awareness. “We systematically reviewed prior work to estimate CKD awareness in different settings and to examine how different questions could lead to different estimates of CKD awareness,” Dr. Chu says. Studies were included in the systematic review and meta-analysis if they involved adults with CKD who were not receiving dialysis and estimated CKD awareness, determined CKD status by laboratory criteria, and provided the exact question wording used to ascertain awareness (Figure).

CKD Awareness Remains Low

“Despite studies examining CKD awareness across a wide variety of settings and using differently worded questions, our research showed that CKD awareness was well under 50% in most of these analyses,” Dr. Chu says. “Perhaps not surprisingly, a notable exception was that studies in the nephrology clinic setting found that most patients were aware of having kidney disease.” Indeed, the rate of CKD awareness was 86.2% among patients from nephrology practices, but just 7.3% for the general population. Differently worded questions may also lead to widely different estimates of CKD awareness, according to Dr. Chu. “After reviewing the sensitivity of wording for CKD awareness, our study found that ‘kidney problem’ was the most sensitive wording for ascertaining whether patients had been told they had CKD,” he adds. “‘Weak or failing kidneys’—the wording currently used by several population-based surveys—may be less sensitive by comparison.”

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Dr. Chu notes that it is unclear where the process in providing CKD awareness is breaking down. “If clinicians aren’t aware that a patient has kidney disease, they cannot disclose it to patients,” he says. “If they aren’t adequately communicating a CKD diagnosis and its implications, patients may remain unaware of their CKD status.”

A Pressing Need for Consistent CKD Nomenclature

According to Dr. Chu, the variations in the terminology used to describe CKD to patients may contribute to low awareness. “There may be opportunities to improve CKD awareness by using a consistent nomenclature that aligns across the domains of clinical care, patient education, and public awareness campaigns,” he explains. “For clinicians, low awareness of CKD underscores the need for kidney health to be included in the context of routinely discussed cardiovascular risk factors, such as hypertension and diabetes. Most patients with those diseases know that they have it. Our goal should be to ensure that the same occurs for people with CKD.”

Additional research is needed to identify the relative importance of different contributors to low awareness, such as underdiagnosis or inadequate communication, and to understand how to effectively address these barriers. “For example, we know that clinicians may be reluctant to discuss CKD because of anxiety about the need for dialysis, even though only a small fraction of patients with CKD eventually progress to needing dialysis,” says Dr. Chu. “As such, it is important to learn how we can get clinicians and patients on the same page about the implications of CKD based on realistic assessments of risk. We have accurate tools for predicting CKD outcomes, including dialysis, cardiovascular events, and death. The next step is to see if applying these tools to patient care can lead to greater CKD awareness, as well as better patient engagement and self-management, with the ultimate end goal of improving health outcomes.”