As highlighted by previous studies, as well as the Getting It Right First Time (GIRFT) national report on renal medicine and data from the UK Renal Registry (UKRR), there is considerable variation in home dialysis uptake across the UK and between individual centres. The Inter-CEPt study was launched last year to assess the cause of these discrepancies and, ultimately, identify potential solutions that may help to bring nationwide home dialysis rates closer to the 20% mark recommended by the GIRFT report. With the study expected to be completed by September 2023, chief investigator Simon Davies and co-investigator Mark Lambie (both Keele University, Keele, UK) discuss the study’s significance and provide a midway update.
Briefly, what is the overall goal of the study and why was it devised?
Lambie: We know that patients treated at some units are more likely to benefit from home dialysis than patients at other units, with a range from less than 10% at the lowest level up to 35% at the highest level. This is a good example of ‘unwarranted variation’—an issue that occurs in all healthcare systems, where there are different outcomes for patients that are due to differences in culture and practices between provider units. Furthermore, we know that particular patient groups are also less likely to be able to access home dialysis, including patients from ethnic minority backgrounds or socio-economically deprived groups. The goal of the study is to address this variability in access to home dialysis and provide some evidence-based recommendations to address this.
Why is this goal important within kidney care in the UK?
Lambie: There is a lot of interest in this topic at the moment, with the GIRFT report including a target that all units should have more than 20% of patients on home dialysis. The National Kidney Federation is running a campaign to increase access to home dialysis and Kidney Care UK has been supporting units with Home Dialysis Roadshows. There are numerous reasons why this area is so important, but the biggest reason is that home dialysis allows patients to fit dialysis in around their lives, which is the best way to support ‘life participation’, an issue highlighted by the patients in the SONG-PD project. Inequities in healthcare are a major problem nationally, and inequity in access to home dialysis is a clear example of an issue that has to be addressed with renal medicine. Home dialysis also has benefits for the healthcare system overall, in that it will improve patient outcomes at the same time as being less costly, which will help to minimise the increasing expenditure necessary for the growing dialysis population.
Could you summarise the study design and any other key details?
Lambie: The study has several phases. The first is an ‘ethnographic’ study, where independent observers witness the process leading up to home dialysis in different units with generally good levels of home dialysis. This allows the observers to identify any practices that may be difficult to see from within the unit. There is also a survey that has now been distributed to all English renal units and contains details of all issues thought to affect home dialysis usage, along with insights from the ethnographic study and patient groups. The survey results will be matched to data from the UKRR, allowing us to identify which processes associated with the patient pathway really do seem to have a substantial impact on home dialysis usage. This will in turn inform a health economic study, which will then inform a consensus process where all stakeholders are brought together to develop a bundle of interventions and recommendations.
Have you observed any challenges or barriers facing the study since its inception?
Lambie: The most obvious challenge we have faced is COVID-19. This has changed the way some units have practiced in relation to home dialysis, but as yet we do not have a clear picture of how—nor do we know the impact of these changes. We have therefore had to adapt our analysis plans, and will have to stage our analysis into ‘pre-COVID’ and ‘COVID’ phases. It has also delayed the start of the study in that the ethnographic work could not start until researchers were able to physically go into units to witness clinical practice.
Could you provide an update on the study thus far?
Davies: Despite the challenges with COVID, we have been able to make substantial progress with the first phase of the study—the in-depth ethnographic research, which we are undertaking in four centres across the UK. We are indebted to the way they have responded to our requests to study their processes around home therapies. They were chosen because they have a better track record than the majority of English dialysis providers and also because they represent different geographical regions and ethnicities, and include both transplanting and non-transplanting sites. We have interviewed staff, patients and carers as well as observing multidisciplinary team meetings. We will finish this part of the research in the coming weeks. The unit survey was launched at UK Kidney Week (UKKW; 7–9 June 2022, Birmingham, UK) and we hope that all centres will have completed their sections by the end of the summer.
Are there any early observations or findings you can share?
Davies: Although recruitment to the ethnographic work was tough—and a little lower than initially planned—the messages coming through from this work are looking clear enough for us to be able to draw conclusions from a reduced sample size. Early findings have really emphasised the importance of the huge trust patients and their carers put in the dialysis units when opting for home therapies. We are now exploring just what it is that centres do to earn that trust. There is much further analysis to be done, but it is clear that the ability of the centre to support individuals—which includes access to psychological and social care support—is key.
Could you expand on the nature of the intervention bundle that plans to follow the study?
Davies: The intervention bundle will be informed by published literature, and ethnographic and survey findings, and we are using the ‘capability, opportunity and motivation for behaviour change’ (COM-B) framework to ensure that all aspects are covered. What we already know is that it will be wide-ranging and must come with some fiscal levers—this is already clear from the published literature. This is where our health economic analysis comes in. It will inform commissioners both of how the finances of home therapies do (or do not) work, and also point to which aspects of the bundle will be most cost-effective.
What do you think the short- and long-term impacts of Inter-CEPt are likely to be on UK dialysis care?
Davies: In the short term, we hope that Inter-CEPt will provide our commissioners and clinical colleagues with the tools that will help them reach the proposed target of 20% of people on home therapies. Achieving this goal will be critically dependent on reducing the large variation on home therapy uptake that currently exists between centres. In the longer term, we hope to see that ethnicity and socioeconomic status are not of themselves barriers to home therapies, and that each and every person facing dialysis feels well-supported in making their own decision—a culture that should pervade the whole kidney unit.