TY - JOUR
T1 - Patient and caregiver perspectives on terms used to describe kidney health
AU - Tong, Allison
AU - Levey, Andrew S.
AU - Eckardt, Kai Uwe
AU - Anumudu, Samaya
AU - Arce, Cristina M.
AU - Baumgart, Amanda
AU - Dunn, Louese
AU - Gutman, Talia
AU - Harris, Tess
AU - Lightstone, Liz
AU - Scholes-Robertson, Nicole
AU - Shen, Jenny I.
AU - Wheeler, David C.
AU - White, David M.
AU - Wilkie, Martin
AU - Craig, Jonathan C.
AU - Jadoul, Michel
AU - Winkelmayer, Wolfgang C.
N1 - Funding Information:
Dr. S. Anumudu attendedandparticipated in KDIGOconferences where travel was paid/reimbursed by KDIGO. Dr. K.-U. Eckardt reports consultancy agreements with Akebia, Bayer, Genzyme, Johnson & Johnson, and Vifor; research funding from Amgen, As-traZeneca, Bayer, Fresenius, Genzyme, Shire, and Vifor; honoraria from Akebia, Bayer, Genzyme, and Vifor; and Scientific Advisory or Membership of Kidney International and British Medical Journal (Editorial Boards), and the Swiss National Science Foundation and German Research Foundation (Scientific Advisory Boards), outside the submitted work. Dr. M. Jadoul reports personal fees, nonfinancial support, and other funding from AstraZeneca; grants and personal fees from Merck (MSD); grants from Amgen, Roche, Ot-suka, and Janssen-Cilag; and personal fees from Astellas, Abbvie, Fresenius, Vifor Med. Care Renal Pharma., and Menarini, paid to his institution. Mr. D.M. White owned CareDx stock in 2019 and currently owns Artara Therapeutics stock; and reports that his great-grandchildren own Amgen stock. Dr. D.C. Wheeler reports personal fees and nonfinancial support from AstraZeneca; and personal fees from Amgen, Boehringer Ingelheim, Bayer, GlaxoSmithKline, Janssen, MSD, Napp, Mundipharma, Reata, and Vifor Fresenius, outside the submitted work. Dr. W.C. Winkelmayer reports personal fees from Akebia, AstraZeneca, Bayer, MSD, Janssen, and Vifor FMCRenalPharma(includingRelypsa),outsidethesubmittedwork. All remaining authors have nothing to disclose.
Funding Information:
Ms. T. Gutman and Dr. N. Scholes-Robertson are supported by National Health and Medical Research Council Program grant ID1092957, and Dr. A. Tong is supported by National Health and Medical Research Council Fellowship grant ID1106716. Dr. J.I. Shen is supported by National Institutes of Health grant K23DK103972. The study was funded by the Kidney Disease Improving Global Outcomes Network.
PY - 2020/7
Y1 - 2020/7
N2 - 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.
AB - 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.
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U2 - 10.2215/CJN.00900120
DO - 10.2215/CJN.00900120
M3 - Article
C2 - 32586923
AN - SCOPUS:85086850373
VL - 15
SP - 937
EP - 948
JO - Clinical Journal of the American Society of Nephrology
JF - Clinical Journal of the American Society of Nephrology
SN - 1555-9041
IS - 7
ER -