WEDNESDAY, July 1, 2020 (HealthDay News) — The obscurity and imprecision of terms related to chronic kidney disease (CKD) can be distressing for patients, according to a study published online June 25 in the Clinical Journal of the American Society of Nephrology.
Allison Tong, Ph.D., from the University of Sydney, and colleagues conducted focus groups of patients with CKD (54) and caregivers (13) from the United States, United Kingdom, and Australia to assess perspectives of terms used to describe kidney health.
The researchers identified four themes in analysis: provoking and exacerbating undue trauma (e.g., fear of the unknown, denoting impending death, despair in having incurable or untreatable disease, premature labeling and assumptions, judgment, stigma, and failure of self); frustrated by ambiguity (e.g., confused by medicalized language, lacking personal relevance, baffled by imprecision in meaning, and/or opposed to obsolete terms); making sense of the prognostic enigma (e.g., conceptualizing level of kidney function, correlating with symptoms and life impact, predicting progression, and need for intervention); and mobilizing self-management (confronting reality, enabling planning and preparation, taking ownership for change, learning medical terms for self-advocacy, and educating others).
“Consistent and meaningful patient-centered terminology may improve patient autonomy, satisfaction, and outcomes,” the authors write.
Several authors disclosed financial ties to the pharmaceutical industry.
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