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A diagnosis of chronic kidney disease: despite fears patients want to know early
Aims: We elicited input from patients on their experience getting a chronic kidney disease (CKD) diagnosis to use for optimizing current CKD education interventions. Methods: We performed structured one-on-one patient interviews. Interviews were recorded, transcribed, and coded using modified ground...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Dustri-Verlag Dr. Karl Feistle
2016
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5012189/ https://www.ncbi.nlm.nih.gov/pubmed/27345185 http://dx.doi.org/10.5414/CN108831 |
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author | Wright Nunes, Julie Roney, Meghan Kerr, Eve Ojo, Akinlolu Fagerlin, Angela |
author_facet | Wright Nunes, Julie Roney, Meghan Kerr, Eve Ojo, Akinlolu Fagerlin, Angela |
author_sort | Wright Nunes, Julie |
collection | PubMed |
description | Aims: We elicited input from patients on their experience getting a chronic kidney disease (CKD) diagnosis to use for optimizing current CKD education interventions. Methods: We performed structured one-on-one patient interviews. Interviews were recorded, transcribed, and coded using modified grounded theory. Participants had CKD, were not on dialysis, and were recruited from general nephrology practices. Results: 49 patients enrolled from January to October 2014. Interviews revealed four major themes: 1. Reaction to diagnosis – patients described emotional reactions and subsequent behavior changes (152 statements); 2. Timing of diagnosis – patients described how they were told about their diagnosis and expectations of when a person should be told (149 statements); 3. Mediators in diagnosis delivery – patients discussed things that helped or hindered understanding and acceptance of their diagnosis (64 statements), and 4. Perceptions of diagnosis terminology – patients discussed perceptions about diagnostic terms (e.g., “chronic kidney disease”) (91 statements). Cross-sectional study design and setting limit interpretation of causality and generalizability. Conclusions: Patients experience fear but prefer early diagnosis communication. More work is needed to define evidence-based guidelines for diagnosis messaging across the spectrum of care. |
format | Online Article Text |
id | pubmed-5012189 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2016 |
publisher | Dustri-Verlag Dr. Karl Feistle |
record_format | MEDLINE/PubMed |
spelling | pubmed-50121892016-09-13 A diagnosis of chronic kidney disease: despite fears patients want to know early Wright Nunes, Julie Roney, Meghan Kerr, Eve Ojo, Akinlolu Fagerlin, Angela Clin Nephrol Research Article Aims: We elicited input from patients on their experience getting a chronic kidney disease (CKD) diagnosis to use for optimizing current CKD education interventions. Methods: We performed structured one-on-one patient interviews. Interviews were recorded, transcribed, and coded using modified grounded theory. Participants had CKD, were not on dialysis, and were recruited from general nephrology practices. Results: 49 patients enrolled from January to October 2014. Interviews revealed four major themes: 1. Reaction to diagnosis – patients described emotional reactions and subsequent behavior changes (152 statements); 2. Timing of diagnosis – patients described how they were told about their diagnosis and expectations of when a person should be told (149 statements); 3. Mediators in diagnosis delivery – patients discussed things that helped or hindered understanding and acceptance of their diagnosis (64 statements), and 4. Perceptions of diagnosis terminology – patients discussed perceptions about diagnostic terms (e.g., “chronic kidney disease”) (91 statements). Cross-sectional study design and setting limit interpretation of causality and generalizability. Conclusions: Patients experience fear but prefer early diagnosis communication. More work is needed to define evidence-based guidelines for diagnosis messaging across the spectrum of care. Dustri-Verlag Dr. Karl Feistle 2016-08 2016-06-27 /pmc/articles/PMC5012189/ /pubmed/27345185 http://dx.doi.org/10.5414/CN108831 Text en © Dustri-Verlag Dr. K. Feistle http://creativecommons.org/licenses/by/2.5/ This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Research Article Wright Nunes, Julie Roney, Meghan Kerr, Eve Ojo, Akinlolu Fagerlin, Angela A diagnosis of chronic kidney disease: despite fears patients want to know early |
title | A diagnosis of chronic kidney disease: despite fears patients want to know early |
title_full | A diagnosis of chronic kidney disease: despite fears patients want to know early |
title_fullStr | A diagnosis of chronic kidney disease: despite fears patients want to know early |
title_full_unstemmed | A diagnosis of chronic kidney disease: despite fears patients want to know early |
title_short | A diagnosis of chronic kidney disease: despite fears patients want to know early |
title_sort | diagnosis of chronic kidney disease: despite fears patients want to know early |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5012189/ https://www.ncbi.nlm.nih.gov/pubmed/27345185 http://dx.doi.org/10.5414/CN108831 |
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