Much of the terminology used by nephrologists is difficult for kidney disease patients and their caregivers to understand and often provokes fear, a sense of futility, and stigma, according to new research published in the Clinical Journal of the American Society of Nephrology.

The Kidney Disease Improving Global Outcomes (KDIGO) foundation commissioned 10 focus groups to discuss terms for kidney health (including renal vs kidney, chronic kidney disease, end-stage kidney disease, kidney failure, and descriptors such as estimated glomerular filtration rate and CKD stage). The information from these focus groups will be used at a consensus conference on nomenclature resulting in a new patient-centered glossary on kidney function and disease.

Overall, 54 CKD patients of various stages and 13 caregivers participated in the focus groups.

“We wanted to understand the impacts that the terms for kidney health have on patients and their families, and to find ways to improve the terms being used,” lead study author Allison Tong, PhD, of the Sydney School of Public Health at the University of Sydney, in Sydney, Australia, stated in a news release from the American Society of Nephrology.


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Despite patients’ secondary education, misunderstanding of terminology was high. Dr Tong and colleagues identified 4 themes:

  1. Provoking and exacerbating undue trauma: Terms such as “chronic” or “end-stage” caused shock and fear and provoked an impending sense of doom. Patients suggested that clinicians use milder terms such as the actual CKD stage or explain that “your kidneys are not functioning very well” to convey that the disease is serious but not necessarily fatal. Some patients despised the term “pre-dialysis” because it conveyed that dialysis was inevitable and there was nothing they could do to avoid it.
  2. Frustrated by ambiguity: The term “kidney” was preferable to “renal.” “Chronic” was regarded as too severe a term for patients in the earlier stages of kidney disease.
  3. Making sense of the prognostic enigma: Numerical glomerular filtration rate should be qualified as early, moderate, advanced or as lower, middle, high to facilitate comprehension about severity, according to some patients. In addition, clinicians should correlate disease severity with symptoms, life impact, and when patients may need interventions such as medications, dialysis, or a kidney transplant.
  4. Mobilizing self-management: On the flip side, some patients embraced current medical terminology as an unavoidable necessity when talking to doctors. The terms were shocking enough to provoke questions, planning, personal changes, and preparation for dialysis or transplantation.

In an accompanying editorial, Paul T. Conway of the American Association of Kidney Patients noted that Dr Tong’s group documented “one of the sad and often infuriating truths that nearly every kidney patient or caregiver has felt, believed or experienced at some point in their battle with kidney disease.”

Nephrology nomenclature was developed for use by professionals in kidney medicine and kidney research, Conway pointed out. “As communicated to patients, this insular nomenclature is rarely well-understood and typically misunderstood,” he wrote. “And, if not deciphered in a meaningful and relatable way to patients, nephrologists may, unwittingly, be exacerbating the worst fears of morbidity and feelings of hopelessness within their patients.”

Disclosure: Several study authors declared affiliations with the pharmaceutical industry. Please see the original reference for a full list of authors’ disclosures.

References

Tong A, Levey AS, Eckardt KU, et al. Patient and caregiver perspectives on terms used to describe kidney health [published online June 25, 2020]. Clin J Am Soc Nephrol. doi: 10.2215/CJN.00900120

Conway PT. Nephrology nomenclature: How to accelerate patient anxiety, suppress engagement and mire the advance of medical innovation [published online June 25, 2020]. Clin J Am Soc Nephrol. doi: 10.2215/CJN.08730620

Should physicians rethink terms used to describe kidney health? July 19, 2020; American Society of Nephrology.