Imperial College London
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Prof Liz Lightstone

Faculty of Medicine, Department of Immunology and Inflammation

Proconsul and Professor of Renal Medicine
 
 
 
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Contact

 

+44 (0)20 3313 3152l.lightstone Website CV

 
 
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Assistant

 

Miss Anjli Jagpal +44 (0)20 3313 3152

 
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Location

 

Commonwealth BuildingHammersmith Campus

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Summary

 

Publications

Citation

BibTex format

@article{Tong:2020:10.2215/CJN.00900120,
author = {Tong, A and Levey, AS and Eckardt, K-U and Anumudu, S and Arce, CM and Baumgart, A and Dunn, L and Gutman, T and Harris, T and Lightstone, L and Scholes-Robertson, N and Shen, JI and Wheeler, DC and White, DM and Wilkie, M and Craig, JC and Jadoul, M and Winkelmayer, WC},
doi = {10.2215/CJN.00900120},
journal = {Clinical Journal of the American Society of Nephrology},
pages = {1--15},
title = {Patient and caregiver perspectives on terms used to describe kidney health},
url = {http://dx.doi.org/10.2215/CJN.00900120},
volume = {15},
year = {2020}
}
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RIS format (EndNote, RefMan)

TY  - JOUR
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 (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.
AU  - Tong,A
AU  - Levey,AS
AU  - Eckardt,K-U
AU  - Anumudu,S
AU  - Arce,CM
AU  - Baumgart,A
AU  - Dunn,L
AU  - Gutman,T
AU  - Harris,T
AU  - Lightstone,L
AU  - Scholes-Robertson,N
AU  - Shen,JI
AU  - Wheeler,DC
AU  - White,DM
AU  - Wilkie,M
AU  - Craig,JC
AU  - Jadoul,M
AU  - Winkelmayer,WC
DO  - 10.2215/CJN.00900120
EP  - 15
PY  - 2020///
SN  - 1555-9041
SP  - 1
TI  - Patient and caregiver perspectives on terms used to describe kidney health
T2  - Clinical Journal of the American Society of Nephrology
UR  - http://dx.doi.org/10.2215/CJN.00900120
UR  - https://www.ncbi.nlm.nih.gov/pubmed/32586923
UR  - https://cjasn.asnjournals.org/content/early/2020/06/24/CJN.00900120
UR  - http://hdl.handle.net/10044/1/80466
VL  - 15
ER  -
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