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Patient and Caregiver Perspectives on Terms Used to Describe Kidney Health

Tong, A; Levey, AS; Eckardt, K-U; Anumudu, S; Arce, CM; Baumgart, A; Dunn, L; ... Winkelmayer, WC; + view all (2020) Patient and Caregiver Perspectives on Terms Used to Describe Kidney Health. Clinical Journal of the American Society of Nephrology , 15 (7) pp. 937-948. 10.2215/CJN.00900120. Green open access

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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 (n=54) and caregivers (n=13) 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.

Type: Article
Title: Patient and Caregiver Perspectives on Terms Used to Describe Kidney Health
Location: United States
Open access status: An open access version is available from UCL Discovery
DOI: 10.2215/CJN.00900120
Publisher version: https://doi.org/10.2215/CJN.00900120
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: Australia, caregivers, chronic, chronic kidney disease, communication, decision making, education, fear, focus groups, judgment, kidney failure, language, nomenclature, ownership, patient participation, patient-centered care, personal satisfaction, prognosis, renal insufficiency, self-management
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine > Renal Medicine
URI: https://discovery.ucl.ac.uk/id/eprint/10106237
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