Making the Terms Used to Describe Kidney Health Work for Patients

By ASN Staff

August 12, 2020

Terminology commonly used by physicians to describe kidney health may be distressing or too difficult to understand for patients with kidney diseases, according to a recent study published in CJASN. The study, “Patient and Caregiver Perspectives on Terms Used to Describe Kidney Health,” included 54 patients with chronic kidney disease (CKD) and 13 caregivers from the United States, United Kingdom, and Australia. Participants discussed various terms for kidney health, including kidney, renal, CKD, end-stage kidney disease, kidney failure, and descriptors for kidney function.

More patient-focused terminology may improve patient autonomy, satisfaction, and health. After analyzing the data, researchers arrived at the following themes: provoking and exacerbating undue trauma, frustrated by ambiguity, making sense of the prognostic enigma, and mobilizing self-management. “We found that terms such as ‘end-stage kidney disease’ can cause undue distress in patients,” said Allison Tong, PhD, who helped design the study. “Terms may also inadvertently imply impending death and be stigmatizing.”

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Terminology commonly used by physicians to describe kidney health may be distressing or too difficult to understand for patients with kidney diseases, according to a recent study published in CJASN. The study, “Patient and Caregiver Perspectives on Terms Used to Describe Kidney Health,” included 54 patients with chronic kidney disease (CKD) and 13 caregivers from the United States, United Kingdom, and Australia. Participants discussed various terms for kidney health, including kidney, renal, CKD, end-stage kidney disease, kidney failure, and descriptors for kidney function.

More patient-focused terminology may improve patient autonomy, satisfaction, and health. After analyzing the data, researchers arrived at the following themes: provoking and exacerbating undue trauma, frustrated by ambiguity, making sense of the prognostic enigma, and mobilizing self-management. “We found that terms such as ‘end-stage kidney disease’ can cause undue distress in patients,” said Allison Tong, PhD, who helped design the study. “Terms may also inadvertently imply impending death and be stigmatizing.”

Date:
Wednesday, August 12, 2020