Which factors determine treatment choices in patients with advanced kidney failure: Co-productive study with patients and key stakeholders

Patients with advanced kidney failure must choose between a number of different treatments including unit based haemodialysis (UHD), peritoneal dialysis (PD), home haemodialysis (HHD), transplant or conservative care. In Wales, the majority of patients continue to choose UHD when for many, home therapy may be more appropriate. UHD is associated with the lowest quality of life, the highest mortality and the highest cost of treatment (ś35k per annum as compared to ś17K and ś5k for peritoneal dialysis and transplant respectively). The rapid increase in the prevalence of diabetes means that the number of patients developing kidney failure is likely to increase over the next decade. Continuing to expand UHD capacity is not a sustainable nor sensible option for the NHS. NICE have suggested that in England, optimising home therapies may lead to annual savings of ś20 million. To better understand treatment choices across Wales, we modified the electronic patient record to enable collection of modality choice data as well as clinical and socio-demographic data on patients who have made a dialysis decision (approx. 1000 patients per year). We also record outcomes including modality started, survival and quality of life. Our pilot data suggests that there is significant variation in uptake of UHD across Wales and that a number of clinical and socio demographic factors are associated with choosing UHD. To better understand how these factors influence decision making, we need more in depth conversations with patients and unpaid carers. We also need to interview clinicians to assess whether or not clinician bias is responsible for the observed variation in choice.

In the proposed study we aim to strengthen our electronic records by integrating with existing data held within the SAIL databank. Additionally, we will use the electronic patient record to identify a sub group of patients with whom to conduct qualitative interviews to better understand disease perceptions, disease impact and treatment choices. We will also use the data to identify clinical variation and to interview clinicians from different regions in Wales to see whether or not clinician bias explains the variation in treatment choice we have observed across Wales. We will also undertake a provisional heath economic analysis to determine the feasibility and sustainability of current and alternative models of service provision (care at home) utilising a co-productive approach. We believe that this analysis will provide a comprehensive understanding of those factors that govern treatment choices, and most importantly will identify modifiable factors that reduce the number of patients defaulting to UHD. Since this co-productive study will be conducted in collaboration with the commissioning network, the findings can be rapidly implemented into clinical practice. Possible changes may include utilising the social care or voluntary sector to support patients to undertake treatment at home. The network can use these findings to reconfigure current pre-dialysis education programs, using the qualitative data gained from patient interviews to ensure that education is delivered in a patient centred manner and supports a robust and meaningful shared decision making model. We believe that the implementation of such findings will better engage and inform patients, will lead to better modality selection and quality of life and will deliver better value for the healthcare system.