Which factors determine treatment choices in patients with advanced kidney failure?
People who have progressive and advanced kidney disease will need to make a decision about future treatment options. There are many treatments available including transplantation (if a person is deemed medically fit for this operation), haemodialysis (either at home or in a dialysis unit) peritoneal dialysis (at home) and supportive care without dialysis (called maximum conservative management).
NHS renal teams work with people living with kidney disease, family members and carers to support people to make the best treatment decision for them. Currently in Wales we know that most people chose unit haemodialysis as their preferred treatment option, but we do not understand the key factors that lead to this choice.
In this study we want to learn more about people with kidney disease, family members and carers understanding of available treatment options, what they value most when making these tough decisions, and the support networks available to them.
Learning more about what matters most to this group, will help others when faced with making these decisions and improve the quality of information and care delivered by the multi-disciplinary renal teams.
The study is being led by Dr Gareth Roberts, Consultant Nephrologist at Cardiff & Vale University Health Board and involves a multi-disciplinary team of experienced kidney specialists and specialist nurses from other health boards across Wales and researchers from the Wales Kidney Research Unit based at Bangor University.
This mixed method study will collect data from renal data sets, SAIL and interviews with people with kidney disease, family members and carers. We will also interview professionals from the multi-disciplinary renal teams.
This is a co-productive study undertaken with patients and key stakeholders across Wales.
The study is currently recruiting and will report in 2021. For further information and to take part see the study project page here http://kidneyresearchunit.wales/en/kidney-treatment-decision-study.htm and follow us on Facebook https://www.facebook.com/Kidney-Treatment-Decisions-Study-340178816784992/ . You can become involved in the research as a patient and public representative as well.
Learning from people’s experiences and opinions will help us understand what is most important to people when making a decision about kidney treatment. This information will inform future education programs in Wales, help others to make the right treatment decision for them and their family and make best use of NHS resources.
Please download our interim report in Lay language here Dialysis Options and Choices Lay Report
We have coproduced a series of service improvements including new 'Pathways to Home Dialysis' linked to the lay report. You can download them here, Pathways to Home Dialysis
We have also coproduced a sustainability table outlining current sustainability issues and importantly ways we can address them. You can download this here. Coproducing more sustainable kidney services
The study was shortlisted for the 2020 Health and Care Research Wales Patient and Public Involvement award. We coproduced a film with people on home dialysis. You can view this film on the HCRW website here https://researchwalesconference2020.com/awards and on our YouTube Channel here https://www.youtube.com/channel/UCuMnTURP10rWTuKw9Y_eu-A?view_as=subscriber
Our academic articles supporting this study are in the process of being published and will be made available here.