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

Australia Caregivers Humans Patient Navigation Renal Dialysis Renal Insufficiency, Chronic / therapy
Chronic renal failure QUALITATIVE RESEARCH Quality in health care

Journal

BMJ open
ISSN: 2044-6055
Titre abrégé: BMJ Open
Pays: England
ID NLM: 101552874

Informations de publication

Date de publication:
05 11 2020
Historique:
entrez: 6 11 2020
pubmed: 7 11 2020
medline: 15 5 2021
Statut: epublish

Résumé

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. 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. 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. 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.

Sections du résumé

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.

Identifiants

DOI: 10.1136/bmjopen-2020-040617 PMID: 33154061 PMC: PMC7646342
pubmed: 33154061
pii: bmjopen-2020-040617
doi: 10.1136/bmjopen-2020-040617
pmc: PMC7646342
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

e040617

Informations de copyright

© 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.

Déclaration de conflit d'intérêts

Competing interests: None declared.

Références

Clin J Am Soc Nephrol. 2012 Oct;7(10):1639-45
pubmed: 22798540
Cancer. 2008 Oct 15;113(8):1999-2010
pubmed: 18780320
J Natl Cancer Inst. 2014 Jun 17;106(6):dju115
pubmed: 24938303
J Health Psychol. 2016 Jul;21(7):1299-310
pubmed: 25293971
Nephrology (Carlton). 2013 May;18(5):340-50
pubmed: 23506545
Cancer Nurs. 2010 Mar-Apr;33(2):127-40
pubmed: 20142736
Nephrology (Carlton). 2013 Sep;18(9):592-604
pubmed: 23815515
Am J Kidney Dis. 2009 Apr;53(4):689-700
pubmed: 19216015
PLoS One. 2018 Feb 20;13(2):e0191980
pubmed: 29462179
J Immigr Minor Health. 2009 Dec;11(6):460-7
pubmed: 18379877
Nephrology (Carlton). 2014 Apr;19(4):234-43
pubmed: 24428274
Am J Kidney Dis. 2019 Nov;74(5):589-600
pubmed: 31324445
Am J Kidney Dis. 2015 Aug;66(2):212-22
pubmed: 25943716
Adv Chronic Kidney Dis. 2016 Jul;23(4):231-9
pubmed: 27324676
Clin J Am Soc Nephrol. 2017 Sep 7;12(9):1418-1427
pubmed: 28778854
Semin Oncol Nurs. 2009 Aug;25(3):212-21
pubmed: 19635400
BMC Nephrol. 2015 May 03;16:69
pubmed: 26024966
Nephrol Dial Transplant. 2008 Oct;23(10):3206-14
pubmed: 18445638
Clin J Am Soc Nephrol. 2014 Oct 7;9(10):1813-21
pubmed: 24832095
J Health Care Poor Underserved. 2012 Feb;23(1):398-413
pubmed: 22423178
Lancet. 2013 Jul 13;382(9887):158-69
pubmed: 23727165
Cancer. 2011 Aug;117(15 Suppl):3543-52
pubmed: 21780089
JAMA. 2016 Jul 12;316(2):156-70
pubmed: 27404184
BMJ Open. 2018 Mar 17;8(3):e019252
pubmed: 29550777
BMC Nephrol. 2019 Apr 18;20(1):134
pubmed: 30999884
J Am Board Fam Med. 2016 Jan-Feb;29(1):78-89
pubmed: 26769880

Auteurs

Chandana Guha (C)

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia chandana.guha@sydney.edu.au.
Centre for Kidney Research, The Children's Hospital, Westmead, New South Wales, Australia.
ORCID: 0000-0002-0767-4185

P Lopez-Vargas (P)

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Centre for Kidney Research, The Children's Hospital, Westmead, New South Wales, Australia.

Angela Ju (A)

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Centre for Kidney Research, The Children's Hospital, Westmead, New South Wales, Australia.

Talia Gutman (T)

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Centre for Kidney Research, The Children's Hospital, Westmead, New South Wales, Australia.

Nicole Jane Scholes-Robertson (NJ)

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Centre for Kidney Research, The Children's Hospital, Westmead, New South Wales, Australia.
ORCID: 0000-0001-8260-0453

Amanda Baumgart (A)

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Centre for Kidney Research, The Children's Hospital, Westmead, New South Wales, Australia.

Germaine Wong (G)

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Centre for Kidney Research, The Children's Hospital, Westmead, New South Wales, Australia.

Jonathan Craig (J)

College of Medicine and Public Health, Flinders University, Bedford Park, South Australia, Australia.

Tim Usherwood (T)

Westmead Clinical School, The University of Sydney, Sydney, New South Wales, Australia.

Sharon Reid (S)

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.

Vanessa Cullen (V)

Forward Thinking Design, Quakers Hill, New South Wales, Australia.

Martin Howell (M)

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Centre for Kidney Research, The Children's Hospital, Westmead, New South Wales, Australia.
ORCID: 0000-0001-9740-712X

Rabia Khalid (R)

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Centre for Kidney Research, The Children's Hospital, Westmead, New South Wales, Australia.

Armando Teixeira-Pinto (A)

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Centre for Kidney Research, The Children's Hospital, Westmead, New South Wales, Australia.

Kate Wyburn (K)

Collaborative Transplant Research Group, Royal Prince Alfred Hospital and Bosch Institute, Faculty of Medicine, University of Sydney, Sydney, New South Wales, Australia.

Shaundeep Sen (S)

Department of Renal Medicine, Concord Repatriation Hospital, Concord, New South Wales, Australia.

Tanya Smolonogov (T)

Department of Renal Medicine, Westmead Hospital, Sydney, New South Wales, Australia.

Vincent W Lee (VW)

Centre for Kidney Research, The Children's Hospital, Westmead, New South Wales, Australia.

Gopala K Rangan (GK)

Centre for Transplant and Renal Research, The Westmead Institute for Medical Research, The University of Sydney, Sydney, New South Wales, Australia.
Department of Renal Medicine, Westmead Hospital, Western Sydney Local Health District, Sydney, New South Wales, Australia.

Andrea Matus Gonzales (A)

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Centre for Kidney Research, The Children's Hospital, Westmead, New South Wales, Australia.

Allison Tong (A)

Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Centre for Kidney Research, The Children's Hospital, Westmead, New South Wales, Australia.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female

Evaluation of Low-Value Services Across Major Medicare Advantage Insurers and Traditional Medicare.

Ciara Duggan, Adam L Beckman, Ishani Ganguli et al.
1.00
Humans United States Aged Cross-Sectional Studies Medicare Part C

Effectiveness of Virtual Yoga for Chronic Low Back Pain: A Randomized Clinical Trial.

Hallie Tankha, Devyn Gaskins, Amanda Shallcross et al.
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH

questionsmedicales.fr › Régions géographiques › Océanie › Australasie › Australie › Patient needs and priorities for patient...
questionsmedicales.fr › Établissements, main d'oeuvre et services de soins de santé › Personnel de santé › Aidants › Patient needs and priorities for patient...
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Patient needs and priorities for patient...
questionsmedicales.fr › Administration des services de santé › Gestion des soins aux patients › Services de santé polyvalents › Soins de santé primaires › Soins centrés sur le patient › Intervention-pivot › Patient needs and priorities for patient...
questionsmedicales.fr › Thérapeutique › Détoxication par sorption › Dialyse rénale › Patient needs and priorities for patient...
questionsmedicales.fr › États, signes et symptômes pathologiques › Processus pathologiques › Caractéristiques de la maladie › Maladie chronique › Insuffisance rénale chronique › Patient needs and priorities for patient...