Patient and caregiver perspectives on terms used to describe kidney health

Allison Tong, Andrew S. Levey, Kai Uwe Eckardt, Samaya Anumudu, Cristina M. Arce, Amanda Baumgart, Louese Dunn, Talia Gutman, Tess Harris, Liz Lightstone, Nicole Scholes-Robertson, Jenny I. Shen, David C. Wheeler, David M. White, Martin Wilkie, Jonathan C. Craig, Michel Jadoul, Wolfgang C. Winkelmayer

Research output: Contribution to journalArticlepeer-review

22 Citations (Scopus)

Abstract

Background and objectives The language used to communicate important aspects of kidney health is inconsistent and may be conceptualized differently by patients and health professionals. These problems may impair the quality of communication, care, and patient outcomes. We aimed to describe the perspectives of patients on terms used to describe kidney health. Design, setting, participants, & measurements Patients with CKD (n554) and caregivers (n513) from the United States, United Kingdom, and Australia participated in ten focus groups to discuss terms for kidney health (including kidney, renal, CKD, ESKD, kidney failure, and descriptors for kidney function). We analyzed the data using thematic analysis. Results We identified four themes: provoking and exacerbating undue trauma (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 (confused by medicalized language, lacking personal relevance, baffled by imprecision in meaning, and/or opposed to obsolete terms); making sense of the prognostic enigma (conceptualizing level of kidney function, correlating with symptoms and effect on life, 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). Conclusions The obscurity and imprecision of terms in CKD can be unduly distressing and traumatizing for patients, which can impair decision making and self-management. Consistent and meaningful patient-centered terminology may improve patient autonomy, satisfaction, and outcomes.

Original languageEnglish
Pages (from-to)937-948
Number of pages12
JournalClinical Journal of the American Society of Nephrology
Volume15
Issue number7
DOIs
Publication statusPublished - 1 Jul 2020

Keywords

  • kidney health
  • Chronic kidney disease (CKD)
  • end stage kidney disease
  • focus groups
  • thematic analysis
  • health professionals
  • caregiver support

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