Using a generative co-design framework to adapt an exercise intervention as part of a multimodal intervention for patients’ receiving haemodialysis with or at risk of renal cachexia

Currently there is insufficient evidence to inform the co-design of an exercise intervention as part of a multimodal intervention for renal cachexia. Co-design is an effective approach in collaborating with service users, carers and healthcare professionals to identify acceptable methods of improving delivery of care. The aim of this study was to use a co-design process to adapt an exercise intervention for patients with or at risk of renal cachexia as part of a cRCT for a multimodal intervention (NCT07107087) The objectives were as follows: (1) To co-design a strategy to promote optimal recruitment and adherence to an exercise intervention for those with or at risk of renal cachexia receiving HD, (2) To produce a conceptual model in relation to the implementation of an exercise intervention for this group. Using Bird and colleagues generative co-design framework for healthcare innovation, we adopted three stages of pre-design, co-design, and post-design. Accordingly, three workshops were conducted to correspond to each stage and the operational decisions recorded in seven steps to report the iterative design of the exercise intervention. The co-design workshops took place in November 2023 (n = 10), June 2024 (n = 11) and February 2025 (n = 6). Public co-design partners from Northern Ireland and England representing Kidney Care UK, Northern Ireland Kidney Patients Association and Northern Ireland Kidney Research Fund, participated in the workshops. Contexts, intervention factors, mechanisms and outcomes which influence the uptake of, and adherence to, an exercise intervention within this patient population were identified. These included: the exercise intervention with an individualised and flexible approach; ensuring the exercise programme is manageable for patients receiving HD (session duration, timing and fistula awareness); ensuring the content of the exercise booklets is relatable and achievable (using household items rather than traditional exercise equipment and accrediting everyday activities as part of exercise log); providing support during the intervention (weekly telephone calls and progress tracking); and invitation to patients receiving HD considered most promising to encourage recruitment, sustain involvement and maximise impact from trusted healthcare professionals. Using the generative co-design framework for healthcare innovation, a conceptual model has been produced to promote optimal recruitment and adherence to an exercise intervention as part of a multimodal intervention for renal cachexia management in practice. This has informed component design, the wider implementation plan and evaluation design of a multimodal intervention for renal cachexia. People living with kidney failure who receive haemodialysis (HD) can develop renal cachexia, a serious condition that causes muscle loss, weakness and poor quality of life. Exercise could help, but we do not yet know the best way to design and deliver an exercise programme that patients will find acceptable and manageable. Working with patients, carers and healthcare staff through co-design can help make sure any programme meets their needs. What we did We used a co-design approach to shape an exercise programme that will form part of a wider treatment package for people who have, or are at risk of, renal cachexia. Our goals were to: We followed a three-stage co-design framework (pre-design, co-design and post-design). Three workshops were held in 2023, 2024 and 2025 with public partners from Northern Ireland and England, including representatives from Kidney Care UK, the Northern Ireland Kidney Patients Association and the Northern Ireland Kidney Research Fund. We recorded decisions at each stage to guide the ongoing design of the programme. What we found Participants identified what helps, or makes it harder, for people receiving HD to take part in and continue with an exercise programme. Key points included: What this means By using a co-design approach, we developed a clear model to support recruitment and adherence to an exercise programme for renal cachexia. The results directly shaped how the programme will be built, delivered and evaluated as part of a wider multimodal treatment approach.

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Journal
Research Involvement and Engagement
Published
2026-04-17
DOI
https://doi.org/10.1186/s40900-026-00875-8
Primary Topic
Dialysis and Renal Disease Management
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article
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article

Using a generative co-design framework to adapt an exercise intervention as part of a multimodal intervention for patients’ receiving haemodialysis with or at risk of renal cachexia

Adrian J. Slee, Ian Swaine, Damian Fogarty, Kamyar Kalantar‐Zadeh et al.
Research Involvement and Engagement
Dialysis and Renal Disease Management
article

Using a generative co-design framework to adapt an exercise intervention as part of a multimodal intervention for patients’ receiving haemodialysis with or at risk of renal cachexia

Adrian J. Slee, Ian Swaine, Damian Fogarty, Kamyar Kalantar‐Zadeh, Clare McKeaveney, Faizan Awan, Helen Noble, Carolyn Blair, Joanne Shields, Malcolm Brown, Oonagh Gooding, Carolyn Hutchinson, Marion Carson, Denis Fouque, Joanne Reid, Teresa McKinley, Karen Magee, Alexander P. Maxwell, Miles D. Witham, Sinead Comer, Robert Mullan, Sam Porter, Andrew Davenport, David S. Seres, Neal Morgan
article en

Abstract

Currently there is insufficient evidence to inform the co-design of an exercise intervention as part of a multimodal intervention for renal cachexia. Co-design is an effective approach in collaborating with service users, carers and healthcare professionals to identify acceptable methods of improving delivery of care. The aim of this study was to use a co-design process to adapt an exercise intervention for patients with or at risk of renal cachexia as part of a cRCT for a multimodal intervention (NCT07107087) The objectives were as follows: (1) To co-design a strategy to promote optimal recruitment and adherence to an exercise intervention for those with or at risk of renal cachexia receiving HD, (2) To produce a conceptual model in relation to the implementation of an exercise intervention for this group. Using Bird and colleagues generative co-design framework for healthcare innovation, we adopted three stages of pre-design, co-design, and post-design. Accordingly, three workshops were conducted to correspond to each stage and the operational decisions recorded in seven steps to report the iterative design of the exercise intervention. The co-design workshops took place in November 2023 (n = 10), June 2024 (n = 11) and February 2025 (n = 6). Public co-design partners from Northern Ireland and England representing Kidney Care UK, Northern Ireland Kidney Patients Association and Northern Ireland Kidney Research Fund, participated in the workshops. Contexts, intervention factors, mechanisms and outcomes which influence the uptake of, and adherence to, an exercise intervention within this patient population were identified. These included: the exercise intervention with an individualised and flexible approach; ensuring the exercise programme is manageable for patients receiving HD (session duration, timing and fistula awareness); ensuring the content of the exercise booklets is relatable and achievable (using household items rather than traditional exercise equipment and accrediting everyday activities as part of exercise log); providing support during the intervention (weekly telephone calls and progress tracking); and invitation to patients receiving HD considered most promising to encourage recruitment, sustain involvement and maximise impact from trusted healthcare professionals. Using the generative co-design framework for healthcare innovation, a conceptual model has been produced to promote optimal recruitment and adherence to an exercise intervention as part of a multimodal intervention for renal cachexia management in practice. This has informed component design, the wider implementation plan and evaluation design of a multimodal intervention for renal cachexia. People living with kidney failure who receive haemodialysis (HD) can develop renal cachexia, a serious condition that causes muscle loss, weakness and poor quality of life. Exercise could help, but we do not yet know the best way to design and deliver an exercise programme that patients will find acceptable and manageable. Working with patients, carers and healthcare staff through co-design can help make sure any programme meets their needs. What we did We used a co-design approach to shape an exercise programme that will form part of a wider treatment package for people who have, or are at risk of, renal cachexia. Our goals were to: We followed a three-stage co-design framework (pre-design, co-design and post-design). Three workshops were held in 2023, 2024 and 2025 with public partners from Northern Ireland and England, including representatives from Kidney Care UK, the Northern Ireland Kidney Patients Association and the Northern Ireland Kidney Research Fund. We recorded decisions at each stage to guide the ongoing design of the programme. What we found Participants identified what helps, or makes it harder, for people receiving HD to take part in and continue with an exercise programme. Key points included: What this means By using a co-design approach, we developed a clear model to support recruitment and adherence to an exercise programme for renal cachexia. The results directly shaped how the programme will be built, delivered and evaluated as part of a wider multimodal treatment approach.

Research Involvement and Engagement
Université Claude Bernard Lyon 1 (FR), Queen's University Belfast (GB), Belfast Health and Social Care Trust (GB), University of Ulster (GB), Lyon College (US), University of California, Irvine (US), Columbia University Irving Medical Center (US), The Royal Free Hospital (GB), Renal Association (GB), Daisy Hill Hospital (GB), Belfast City Hospital (GB), Northern Health and Social Care Trust (GB), Antrim Area Hospital (GB), Faculty (United Kingdom) (GB), NIHR Newcastle Biomedical Research Centre (GB), University College London (GB), University of Greenwich (GB), Newcastle University (GB), Bournemouth University (GB)
Industry, innovation and infrastructure
Openalex Percentile: Top 20%
Dialysis and Renal Disease Management
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