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Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report

BACKGROUND AND OBJECTIVE: Patients with early chronic kidney disease (CKD) face challenges in accessing healthcare, including delays in diagnosis, fragmented speciality care and lack of tailored education and psychosocial support. Patient navigator programmes have the potential to improve the proces...

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Autores principales: Guha, Chandana, Lopez-Vargas, P, Ju, Angela, Gutman, Talia, Scholes-Robertson, Nicole Jane, Baumgart, Amanda, Wong, Germaine, Craig, Jonathan, Usherwood, Tim, Reid, Sharon, Cullen, Vanessa, Howell, Martin, Khalid, Rabia, Teixeira-Pinto, Armando, Wyburn, Kate, Sen, Shaundeep, Smolonogov, Tanya, Lee, Vincent W, Rangan, Gopala K, Matus Gonzales, Andrea, Tong, Allison
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7646342/
https://www.ncbi.nlm.nih.gov/pubmed/33154061
http://dx.doi.org/10.1136/bmjopen-2020-040617
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author Guha, Chandana
Lopez-Vargas, P
Ju, Angela
Gutman, Talia
Scholes-Robertson, Nicole Jane
Baumgart, Amanda
Wong, Germaine
Craig, Jonathan
Usherwood, Tim
Reid, Sharon
Cullen, Vanessa
Howell, Martin
Khalid, Rabia
Teixeira-Pinto, Armando
Wyburn, Kate
Sen, Shaundeep
Smolonogov, Tanya
Lee, Vincent W
Rangan, Gopala K
Matus Gonzales, Andrea
Tong, Allison
author_facet Guha, Chandana
Lopez-Vargas, P
Ju, Angela
Gutman, Talia
Scholes-Robertson, Nicole Jane
Baumgart, Amanda
Wong, Germaine
Craig, Jonathan
Usherwood, Tim
Reid, Sharon
Cullen, Vanessa
Howell, Martin
Khalid, Rabia
Teixeira-Pinto, Armando
Wyburn, Kate
Sen, Shaundeep
Smolonogov, Tanya
Lee, Vincent W
Rangan, Gopala K
Matus Gonzales, Andrea
Tong, Allison
author_sort Guha, Chandana
collection PubMed
description BACKGROUND AND OBJECTIVE: Patients with early chronic kidney disease (CKD) face challenges in accessing healthcare, including delays in diagnosis, fragmented speciality care and lack of tailored education and psychosocial support. Patient navigator programmes have the potential to improve the process of care and outcomes. The objective of this study is to describe the experiences of patients on communication, access of care and self-management and their perspectives on patient navigator programmes in early CKD. DESIGN, SETTING AND PARTICIPANTS: We convened a workshop in Australia with 19 patients with CKD (all stages including CKD Stage 1 to 5 not on dialysis, 5D (dialysis), and 5T (transplant)) and five caregivers. All of them were over 18 years and English-speaking. Transcripts from the workshop were analysed thematically. RESULTS: Four themes that captured discussions were: lost in the ambiguity of symptoms and management, battling roadblocks while accessing care, emotionally isolated after diagnosis and re-establishing lifestyle and forward planning. Five themes that focussed on patient navigator programmes were: trust and credibility, respecting patient choices and readiness to accept the programme, using accessible language to promote the programme, offering multiple ways to engage and communicate and maintaining confidentiality and privacy. Of the 17 features identified as important for a patient navigator programme, the top five were delivery of education, psychosocial support, lifestyle modification, communication and decision-making support and facilitating care. CONCLUSION: Patient navigator services can address gaps in services around health literacy, communication, psychosocial support and coordination across multiple healthcare settings. In comparison to the existing navigator programmes, and other services that are aimed at addressing these gaps, credible, accessible and flexible patient navigator programmes for patients with early CKD, that support education, decision-making, access to care and self-management designed in partnership with patients, may be more acceptable to patients.
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spelling pubmed-76463422020-11-10 Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report Guha, Chandana Lopez-Vargas, P Ju, Angela Gutman, Talia Scholes-Robertson, Nicole Jane Baumgart, Amanda Wong, Germaine Craig, Jonathan Usherwood, Tim Reid, Sharon Cullen, Vanessa Howell, Martin Khalid, Rabia Teixeira-Pinto, Armando Wyburn, Kate Sen, Shaundeep Smolonogov, Tanya Lee, Vincent W Rangan, Gopala K Matus Gonzales, Andrea Tong, Allison BMJ Open Qualitative Research BACKGROUND AND OBJECTIVE: Patients with early chronic kidney disease (CKD) face challenges in accessing healthcare, including delays in diagnosis, fragmented speciality care and lack of tailored education and psychosocial support. Patient navigator programmes have the potential to improve the process of care and outcomes. The objective of this study is to describe the experiences of patients on communication, access of care and self-management and their perspectives on patient navigator programmes in early CKD. DESIGN, SETTING AND PARTICIPANTS: We convened a workshop in Australia with 19 patients with CKD (all stages including CKD Stage 1 to 5 not on dialysis, 5D (dialysis), and 5T (transplant)) and five caregivers. All of them were over 18 years and English-speaking. Transcripts from the workshop were analysed thematically. RESULTS: Four themes that captured discussions were: lost in the ambiguity of symptoms and management, battling roadblocks while accessing care, emotionally isolated after diagnosis and re-establishing lifestyle and forward planning. Five themes that focussed on patient navigator programmes were: trust and credibility, respecting patient choices and readiness to accept the programme, using accessible language to promote the programme, offering multiple ways to engage and communicate and maintaining confidentiality and privacy. Of the 17 features identified as important for a patient navigator programme, the top five were delivery of education, psychosocial support, lifestyle modification, communication and decision-making support and facilitating care. CONCLUSION: Patient navigator services can address gaps in services around health literacy, communication, psychosocial support and coordination across multiple healthcare settings. In comparison to the existing navigator programmes, and other services that are aimed at addressing these gaps, credible, accessible and flexible patient navigator programmes for patients with early CKD, that support education, decision-making, access to care and self-management designed in partnership with patients, may be more acceptable to patients. BMJ Publishing Group 2020-11-05 /pmc/articles/PMC7646342/ /pubmed/33154061 http://dx.doi.org/10.1136/bmjopen-2020-040617 Text en © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/ http://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
spellingShingle Qualitative Research
Guha, Chandana
Lopez-Vargas, P
Ju, Angela
Gutman, Talia
Scholes-Robertson, Nicole Jane
Baumgart, Amanda
Wong, Germaine
Craig, Jonathan
Usherwood, Tim
Reid, Sharon
Cullen, Vanessa
Howell, Martin
Khalid, Rabia
Teixeira-Pinto, Armando
Wyburn, Kate
Sen, Shaundeep
Smolonogov, Tanya
Lee, Vincent W
Rangan, Gopala K
Matus Gonzales, Andrea
Tong, Allison
Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report
title Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report
title_full Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report
title_fullStr Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report
title_full_unstemmed Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report
title_short Patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report
title_sort patient needs and priorities for patient navigator programmes in chronic kidney disease: a workshop report
topic Qualitative Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7646342/
https://www.ncbi.nlm.nih.gov/pubmed/33154061
http://dx.doi.org/10.1136/bmjopen-2020-040617
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