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New research into dialysis options and choices
Bwrdd Iechyd Prifysgol Abertawe Bro Morgannwg University Health Board
Bwrdd Iechyd Prifysgol New research into dialysis options Aneurin Bevan and choices University Health Board
Bwrdd Iechyd Prifysgol Caerdydd a’r Fro Cardiff and Vale University Health Board
Bwrdd Iechyd Prifysgol Cwm Taf University Health Board
An all Wales co-productive study is exploring factors that determine treatment choices in people with advanced kidney failure.
The challenge People living with end stage kidney disease need to make a decision about their future treatment options. In Wales there are many treatments available including transplantation, dialysis at home (either haemodialysis or peritoneal dialysis), dialysis in a hospital (haemodialysis), and supportive care without dialysis (called maximum conservative management). NHS renal teams work with kidney disease patients, family members and carers in order to support people in making the best treatment decisions for them. Currently in Wales it is known that most people choose dialysis in hospital as their preferred treatment option. This is despite hospital based dialysis being associated with the lowest quality of life and also being expensive. In this study, the team want to learn more about what people with kidney disease, their family members and carers understand of the available treatment options, what they value most when making these difficult decisions, and the support networks available to them across Wales.
The research The study is led by Dr Gareth Roberts, Consultant Nephrologist at Cardiff & Vale University Health Board, and involves a multi-disciplinary team of experienced kidney specialists, the commissioners of Welsh renal services, health economists based at Bangor University, researchers from the Wales Kidney Research Unit at Bangor University, and people living with kidney disease. This mixed method study will collect data from patient education programmes, renal data sets, national health and social care data sets, and interviews with kidney
Bwrdd Iechyd Prifysgol Betsi Cadwaladr University Health Board
Bwrdd Iechyd Addysgu Powys Powys Teaching Health Board
Ymddiriedolaeth GIG Felindre Velindre NHS Trust Bwrdd Iechyd Prifysgol Hywel Dda University Health Board
Iechyd Cyhoeddus Cymru Public Health Wales
Ymddiriedolaeth GIG Gwasanaethau Ambiwlans Cymru Welsh Ambulance Services NHS Trust
disease patients, family members and carers. The team will also interview professionals from the multi-disciplinary renal teams. It is a co-productive study being undertaken with patients and key stakeholders across Wales, with funding from Health and Care Research Wales.
The results The study has recently closed to recruiting participants. 92 participants were interviewed, of which 51 were people living with Chronic Kidney Disease and 41 were family members. In addition, focus groups and one-to-one interviews were undertaken with more than 30 kidney health and social care professionals including clinicians, specialist nurses, managers and allied health professionals. They were asked about their views on why more people do not choose home therapy, barriers they face, service configurations and any biases they may have towards the various kidney treatments. An all Wales specialist renal data set, VitalData, records a person’s initial treatment choice, where they progress to, and detailed demographic details. It also captures frailty and quality of life scores inputted by healthcare professionals. This data can be used to map with other datasets through Secure Anonymised Integrated Linage (SAIL) systems, such as GP and hospital records, in order to build up a comprehensive picture of who is choosing what, why and where across Wales. The study team will report in the autumn of 2020. Due to COVID-19, they have needed to reconfigure the way they work coproductively in the final stages of the study. They have created a series of webinars, online forums and linked working groups in order to maintain patient and public input. For further information on the study and ways to participate (e.g. share your views or become involved as a patient or public representative) please visit www. kidneyresearchunit.wales or contact the Wales Kidney Research Unit via Twitter @theWKRU
The impact Learning from people’s experiences and opinions will help the team to understand what is most important to people when making decisions about their future kidney treatment. In addition to helping patients and their families to make better decisions, this study will inform future education programmes in Wales and help make best use of NHS resources.
