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

There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

Abstract

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.

Related collections

Most cited references 27

Record: found
Abstract: found
Article: not found

Evolving importance of kidney disease: from subspecialty to global health burden.

Kai-Uwe Eckardt, Josef Coresh, Olivier Devuyst … (2013)

In the past decade, kidney disease diagnosed with objective measures of kidney damage and function has been recognised as a major public health burden. The population prevalence of chronic kidney disease exceeds 10%, and is more than 50% in high-risk subpopulations. Independent of age, sex, ethnic group, and comorbidity, strong, graded, and consistent associations exist between clinical prognosis and two hallmarks of chronic kidney disease: reduced glomerular filtration rate and increased urinary albumin excretion. Furthermore, an acute reduction in glomerular filtration rate is a risk factor for adverse clinical outcomes and the development and progression of chronic kidney disease. An increasing amount of evidence suggests that the kidneys are not only target organs of many diseases but also can strikingly aggravate or start systemic pathophysiological processes through their complex functions and effects on body homoeostasis. Risk of kidney disease has a notable genetic component, and identified genes have provided new insights into relevant abnormalities in renal structure and function and essential homoeostatic processes. Collaboration across general and specialised health-care professionals is needed to fully address the challenge of prevention of acute and chronic kidney disease and improve outcomes. Copyright © 2013 Elsevier Ltd. All rights reserved.

0 comments Cited 255 times – based on 0 reviews      Review now

Record: found
Abstract: found
Article: not found

Patient navigation: state of the art or is it science?

Darryll D. Dudley, Jonathan C. K. Wells, Richard A. Greene … (2008)

First implemented in 1990, patient navigation interventions are emerging today as an approach to reduce cancer disparities. However, there is lack of consensus about how patient navigation is defined, what patient navigators do, and what their qualifications should be. Little is known about the efficacy and cost-effectiveness of patient navigation. For this review, the authors conducted a qualitative synthesis of published literature on cancer patient navigation. By using the keywords 'navigator' or 'navigation' and 'cancer,' 45 articles were identified in the PubMed database and from reference searches that were published or in press through October 2007. Sixteen studies provided data on the efficacy of navigation in improving timeliness and receipt of cancer screening, diagnostic follow-up care, and treatment. Patient navigation services were defined and differentiated from other outreach services. Overall, there was evidence of some degree of efficacy for patient navigation in increasing participation in cancer screening and adherence to diagnostic follow-up care after the detection of an abnormality. The reported increases in screening ranged from 10.8% to 17.1%, and increases in adherence to diagnostic follow-up care ranged from 21% to 29.2% compared with control patients. There was less evidence regarding the efficacy of patient navigation in reducing either late-stage cancer diagnosis or delays in the initiation of cancer treatment or improving outcomes during cancer survivorship. There were methodological limitations in most studies, such as a lack of control groups, small sample sizes, and contamination with other interventions. Although cancer-related patient navigation interventions are being adopted increasingly across the United States and Canada, further research will be necessary to evaluate their efficacy and cost-effectiveness in improving cancer care. (c) 2008 American Cancer Society.

0 comments Cited 137 times – based on 0 reviews      Review now

Record: found
Abstract: found
Article: not found

Setting research priorities for patients on or nearing dialysis.

Andreas Laupacis, Claire Large, Sally Crowe P G Dip … (2014)

With increasing emphasis among health care providers and funders on patient-centered care, it follows that patients and their caregivers should be included when priorities for research are being established. This study sought to identify the most important unanswered questions about the management of kidney failure from the perspective of adult patients on or nearing dialysis, their caregivers, and the health care professionals who care for these patients. Research uncertainties were identified through a national Canadian survey of adult patients on or nearing dialysis, their caregivers, and health care professionals. Uncertainties were refined by a steering committee that included patients, caregivers, researchers, and clinicians to assemble a short-list of the top 30 uncertainties. Thirty-four people (11 patients; five caregivers; eight physicians; six nurses; and one social worker, pharmacist, physiotherapist, and dietitian each) from across Canada subsequently participated in a workshop to determine the top 10 research questions. In total, 1570 usable research uncertainties were received from 317 respondents to the survey. Among these, 259 unique uncertainties were identified; after ranking, these were reduced to a short-list of 30 uncertainties. During the in-person workshop, the top 10 research uncertainties were identified, which included questions about enhanced communication among patients and providers, dialysis modality options, itching, access to kidney transplantation, heart health, dietary restrictions, depression, and vascular access. These can be used alongside the results of other research priority-setting exercises to guide researchers in designing future studies and inform health care funders. Copyright © 2014 by the American Society of Nephrology.

0 comments Cited 136 times – based on 0 reviews      Review now

All references

Author and article information

Journal

Journal ID (nlm-ta): BMJ Open

Journal ID (iso-abbrev): BMJ Open

Journal ID (hwp): bmjopen

Journal ID (publisher-id): bmjopen

Title: BMJ Open

Publisher: BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )

ISSN (Electronic): 2044-6055

Publication date Collection: 2020

Publication date (Electronic): 5 November 2020

Volume: 10

Issue: 11

Electronic Location Identifier: e040617

Affiliations

[1 ]departmentSydney School of Public Health , The University of Sydney , Sydney, New South Wales, Australia

[2 ]Centre for Kidney Research, The Children’s Hospital , Westmead, New South Wales, Australia

[3 ]College of Medicine and Public Health, Flinders University , Bedford Park, South Australia, Australia

[4 ]departmentWestmead Clinical School , The University of Sydney , Sydney, New South Wales, Australia

[5 ]Forward Thinking Design , Quakers Hill, New South Wales, Australia

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

[7 ]departmentDepartment of Renal Medicine , Concord Repatriation Hospital , Concord, New South Wales, Australia

[8 ]departmentDepartment of Renal Medicine , Westmead Hospital , Sydney, New South Wales, Australia

[9 ]Centre for Transplant and Renal Research, The Westmead Institute for Medical Research, The University of Sydney , Sydney, New South Wales, Australia

[10 ]Department of Renal Medicine, Westmead Hospital, Western Sydney Local Health District , Sydney, New South Wales, Australia

Author notes

[Correspondence to ] Ms Chandana Guha; chandana.guha@ 123456sydney.edu.au

Author information

Chandana Guha http://orcid.org/0000-0002-0767-4185

Nicole Jane Scholes-Robertson http://orcid.org/0000-0001-8260-0453

Martin Howell http://orcid.org/0000-0001-9740-712X

Article

Publisher ID: bmjopen-2020-040617

DOI: 10.1136/bmjopen-2020-040617

PMC ID: 7646342

PubMed ID: 33154061

SO-VID: cc2d85ef-81e3-4be9-baee-b6ea10d857d1

License:

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/.

History

Date received : 18 May 2020

Date revision received : 30 August 2020

Date accepted : 13 October 2020

Custom metadata

special-feature unlocked

ScienceOpen disciplines: Medicine

Keywords: qualitative research,chronic renal failure,quality in health care

Data availability:

ScienceOpen disciplines: Medicine

Keywords: qualitative research, chronic renal failure, quality in health care

Comments

Comment on this article

Cited by 11

See all cited by

Most referenced authors 351

See all reference authors