Assessing the efficacy of coproduction to better understand the barriers to achieving sustainability in NHS chronic kidney services and create alternate pathways

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Abstract

Context

Too many people living with chronic kidney disease are opting for and starting on hospital‐based dialysis compared to a home‐based kidney replacement therapy. Dialysis services are becoming financially unsustainable.

Objective

This study aimed to assess the efficacy of coproductive research in chronic kidney disease service improvement to achieve greater sustainability.

Design

A 2‐year coproductive service improvement study was conducted with multiple stakeholders with the specific intention of maximizing engagement with the national health kidney services, patients and public.

Setting and Participants

A national health kidney service (3 health boards, 18 dialysis units), patients and families ( n = 50), multidisciplinary teams including doctors, nurses, psychologists, social workers, and so forth ( n = 68), kidney charities, independent dialysis service providers and wider social services were part of this study.

Findings

Coproductive research identified underutilized resources (e.g., patients on home dialysis and social services) and their potential, highlighted unmet social care needs for patients and families and informed service redesign. Education packages were reimagined to support the home dialysis agenda including opportunities for wider service input. The impacts of one size fits all approaches to dialysis on specialist workforce skills were made clearer and also professional, patient and public perceptions of key sustainability policies.

Discussion and Conclusions

Patient and key stakeholders mapped out new ways to link services to create more sustainable models of kidney health and social care. Maintaining principles of knowledge coproduction could help achieve financial sustainability and move towards more prudent adult chronic kidney disease services.

Patient or Public Contribution

Involved in developing research questions, study design, management and conduct, interpretation of evidence and dissemination.

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Most cited references 51

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Global, regional, and national burden of chronic kidney disease, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017

Boris Bikbov, Caroline A. Purcell, Andrew Levey … (2021)

Summary Background Health system planning requires careful assessment of chronic kidney disease (CKD) epidemiology, but data for morbidity and mortality of this disease are scarce or non-existent in many countries. We estimated the global, regional, and national burden of CKD, as well as the burden of cardiovascular disease and gout attributable to impaired kidney function, for the Global Burden of Diseases, Injuries, and Risk Factors Study 2017. We use the term CKD to refer to the morbidity and mortality that can be directly attributed to all stages of CKD, and we use the term impaired kidney function to refer to the additional risk of CKD from cardiovascular disease and gout. Methods The main data sources we used were published literature, vital registration systems, end-stage kidney disease registries, and household surveys. Estimates of CKD burden were produced using a Cause of Death Ensemble model and a Bayesian meta-regression analytical tool, and included incidence, prevalence, years lived with disability, mortality, years of life lost, and disability-adjusted life-years (DALYs). A comparative risk assessment approach was used to estimate the proportion of cardiovascular diseases and gout burden attributable to impaired kidney function. Findings Globally, in 2017, 1·2 million (95% uncertainty interval [UI] 1·2 to 1·3) people died from CKD. The global all-age mortality rate from CKD increased 41·5% (95% UI 35·2 to 46·5) between 1990 and 2017, although there was no significant change in the age-standardised mortality rate (2·8%, −1·5 to 6·3). In 2017, 697·5 million (95% UI 649·2 to 752·0) cases of all-stage CKD were recorded, for a global prevalence of 9·1% (8·5 to 9·8). The global all-age prevalence of CKD increased 29·3% (95% UI 26·4 to 32·6) since 1990, whereas the age-standardised prevalence remained stable (1·2%, −1·1 to 3·5). CKD resulted in 35·8 million (95% UI 33·7 to 38·0) DALYs in 2017, with diabetic nephropathy accounting for almost a third of DALYs. Most of the burden of CKD was concentrated in the three lowest quintiles of Socio-demographic Index (SDI). In several regions, particularly Oceania, sub-Saharan Africa, and Latin America, the burden of CKD was much higher than expected for the level of development, whereas the disease burden in western, eastern, and central sub-Saharan Africa, east Asia, south Asia, central and eastern Europe, Australasia, and western Europe was lower than expected. 1·4 million (95% UI 1·2 to 1·6) cardiovascular disease-related deaths and 25·3 million (22·2 to 28·9) cardiovascular disease DALYs were attributable to impaired kidney function. Interpretation Kidney disease has a major effect on global health, both as a direct cause of global morbidity and mortality and as an important risk factor for cardiovascular disease. CKD is largely preventable and treatable and deserves greater attention in global health policy decision making, particularly in locations with low and middle SDI. Funding Bill & Melinda Gates Foundation.

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Shared Decision Making: A Model for Clinical Practice

Glyn Elwyn, Dominick Frosch, Richard Thomson … (2012)

The principles of shared decision making are well documented but there is a lack of guidance about how to accomplish the approach in routine clinical practice. Our aim here is to translate existing conceptual descriptions into a three-step model that is practical, easy to remember, and can act as a guide to skill development. Achieving shared decision making depends on building a good relationship in the clinical encounter so that information is shared and patients are supported to deliberate and express their preferences and views during the decision making process. To accomplish these tasks, we propose a model of how to do shared decision making that is based on choice, option and decision talk. The model has three steps: a) introducing choice, b) describing options, often by integrating the use of patient decision support, and c) helping patients explore preferences and make decisions. This model rests on supporting a process of deliberation, and on understanding that decisions should be influenced by exploring and respecting “what matters most” to patients as individuals, and that this exploration in turn depends on them developing informed preferences.

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Worldwide access to treatment for end-stage kidney disease: a systematic review.

Thaminda Liyanage, Toshiharu Ninomiya, Vivekanand Jha … (2015)

End-stage kidney disease is a leading cause of morbidity and mortality worldwide. Prevalence of the disease and worldwide use of renal replacement therapy (RRT) are expected to rise sharply in the next decade. We aimed to quantify estimates of this burden.

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Author and article information

Contributors

Leah Mc Laughlin:

ORCID: http://orcid.org/0000-0003-0185-6639

Role: Healthcare Scientist

Gail Williams: Role: Lead Renal Nurse

Gareth Roberts: Role: Consultant Nephrologist

David Dallimore:

ORCID: http://orcid.org/0000-0002-4557-8186

Role: Research Officer

David Fellowes: Role: O Levels, Senior Manager, Trustee, Chartered Marketer

Joanne Popham: Role: CEO

Joanna Charles: Role: Research Fellow

James Chess: Role: Consultant Nephrologist

Sarah Hirst Williams: Role: Home Dialysis Team Manager

Jonathan Mathews: Role: Wales Renal Network Co‐ordinator

Judith Stone: Role: Managing Director, Assistant Director

Linzi Isaac: Role: Patient Support and Advocacy Officer

Jane Noyes:

ORCID: http://orcid.org/0000-0003-4238-5984

Role: DPhil Professorjane.noyes@bangor.ac.uk

Journal

Journal ID (nlm-ta): Health Expect

Journal ID (iso-abbrev): Health Expect

Journal ID (doi): 10.1111/(ISSN)1369-7625

Journal ID (publisher-id): HEX

Title: Health Expectations : An International Journal of Public Participation in Health Care and Health Policy

Publisher: John Wiley and Sons Inc. (Hoboken )

ISSN (Print): 1369-6513

ISSN (Electronic): 1369-7625

Publication date (Electronic): 28 December 2021

Publication date (Print): April 2022

Volume: 25

Issue: 2 , COVID‐19 and Co‐Production Special Section ( doiID: 10.1111/hex.v25.2 )

Pages: 579-606

Affiliations

[ ¹ ] School of Medical and Health Sciences Bangor University Bangor Wales UK

[ ² ] Welsh Renal Clinical Network Welsh Health Specialised Services Committee Pontypridd Wales UK

[ ³ ] Cardiff and Vale University Health Board Cardiff Wales UK

[ ⁴ ] Patient Representative Swansea Wales UK

[ ⁵ ] Paul Popham Fund Renal Support Wales Swansea Wales UK

[ ⁶ ] Centre for Health Economics and Medicines Evaluation Bangor University, School of Medical and Health Sciences Bangor Wales UK

[ ⁷ ] Swansea Bay University Health Board Swansea Wales UK

[ ⁸ ] Betsi Cadwaladr University Health Board Bangor Wales UK

[ ⁹ ] Kidney Wales Foundation Cardiff Wales UK

[ ¹⁰ ] Kidney Care UK Alton UK

Author notes

[*] [* ] Correspondence Jane Noyes, School of Health Sciences, Bangor University, Bangor, Wales LL57 2EF, UK.

Email: jane.noyes@ 123456bangor.ac.uk

Author information

Leah Mc Laughlin http://orcid.org/0000-0003-0185-6639

David Dallimore http://orcid.org/0000-0002-4557-8186

Jane Noyes http://orcid.org/0000-0003-4238-5984

Article

Publisher ID: HEX13391

DOI: 10.1111/hex.13391

PMC ID: 8957730

PubMed ID: 34964215

SO-VID: 8618384e-ebbc-47fb-9045-2f211b08528c

License:

This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

History

Date revision received : 27 August 2021

Date received : 14 September 2020

Date accepted : 18 November 2021

Page count

Figures: 3, Tables: 4, Pages: 28, Words: 16215

Funding

Funded by: Health and Care Research Wales , doi 10.13039/100012068;

Award ID: RfPPB‐17‐1423(T)

Custom metadata

source-schema-version-number 2.0

cover-date April 2022

details-of-publishers-convertor Converter:WILEY_ML3GV2_TO_JATSPMC version:6.1.2 mode:remove_FC converted:27.03.2022

ScienceOpen disciplines: Health & Social care

Keywords: coproduction,dialysis,family,kidney disease,patient,service improvement study,sustainability

Data availability:

ScienceOpen disciplines: Health & Social care

Keywords: coproduction, dialysis, family, kidney disease, patient, service improvement study, sustainability

Assessing the efficacy of coproduction to better understand the barriers to achieving sustainability in NHS chronic kidney services and create alternate pathways

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Abstract

Context

Objective

Design

Setting and Participants

Findings

Discussion and Conclusions

Patient or Public Contribution

Related collections

Karger: Nephrology

Most cited references 51

Global, regional, and national burden of chronic kidney disease, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017

Shared Decision Making: A Model for Clinical Practice

Worldwide access to treatment for end-stage kidney disease: a systematic review.

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