There are multiple barriers to home dialysis initiation, and these disproportionately affect vulnerable populations. Current solutions need to be scaled up, with particular emphasis on educating physicians on home dialysis, improving modality education, increasing support for patients and families, and changing financial incentives to favour building home dialysis programmes. There is also a need to better understand culturally specific barriers to home dialysis choice. This was the crux of a presentation by Jenny Shen (Division of Nephrology and Hypertension, David Geffen School of Medicine at University of California, Los Angeles, USA) on ensuring equitable access to home dialysis at the UK Kidney Week virtual conference (UKKW; 4–7 October 2021).
A roundtable discussion following the session on improving access to UK home dialysis was chaired by Simon Davies (University Hospital of North Midlands, Stoke-on-Trent, UK) with participation from session chairs and fellow consultant nephrologists Jyoti Baharani (Heartlands Hospital, part of University Hospitals NHS Trust, Birmingham, UK) and Bhrigu Sood (St Helier Hospital, Epsom, UK).
Other panellists included Kirit Modi (honorary president of the National Kidney Federation [NKF], London, UK), Anna Winterbottom (decision scientist at University of Leeds, Leeds, UK) and Sandip Mitra (consultant nephrologist at Manchester University Hospitals Foundation Trust, Manchester, UK).
Davies kickstarted the conversation by asking the panel to pinpoint the single most impactful intervention on equity of access to home dialysis. Modi responded by stressing that the federation had been campaigning for more home dialysis for several years. He emphasised systemic and structural issues prevented patients from accessing home dialysis, noting that the issue of equity nested within that larger framework.
In January 2021, the UK NKF published a report urging the kidney community to step up and increase home dialysis provision. It makes seven recommendations, and the charity also wants all adults in the UK to reach a minimum prevalence rate of 20% of their dialysis population on home dialysis by the end of 2024. “We need to look at policies and practices at the highest levels, because I do not think that units providing [in-centre] dialysis are sufficiently accountable for what they do,” Modi said. “And, therefore, nobody questions and challenges them, because the data has been there for a long time.”
With regard to the levers for change, he set his sights on improving the support for patients considering dialysis modalities. “Many patients do not know enough about home dialysis and its benefits, and can be worried about taking on extra responsibility. That is where the NKF is increasing the range of support it provides to home dialysis patients.”
In September 2021, the NKF established a peer support service for home dialysis patients and carers, giving them the opportunity to talk in confidence to those with first-hand experience of home dialysis. “We are hoping that will help patients up and down the country so they are empowered to ask the question locally—to say, can I please be considered [for home dialysis]?” he outlined.
Winterbottom zeroed in on the need to present consistent information that informs people about all available treatments in an equitable way. Her go-to single intervention would see the integration of patient decision aids within kidney services, to improve the quality and consistency of patient information. “We know there is a wide variation of how pretreatment education is provided in terms of the type and amount of information that people receive,” she added. “There are multiple patient leaflets available, developed by different organisations, and not all of them are designed in ways that are known to promote informed decision-making. Patient decision aids can help reduce some of that potential bias and help people understand their treatment options in the context of their care pathway, and their daily lives.”
Patient decision aids endorsed by the National Institute for Health and Care Excellence (NICE) to support people making treatment decisions about renal replacement therapy options are available via the NICE website.
Prompted by Davies to describe measures that had successfully resulted in an upswing in home dialysis uptake at her centre, Baharani provided insight into galvanising a culture change for patients and staff. “We did that by overhauling the way we spoke to patients,” she said. “We made some simple tweaks ensuring that patients had to come to peritoneal dialysis to meet the nurses, whereas before they only had to go into a haemodialysis unit, and we introduced peer educators. I am also going to say something controversial: with in-centre haemodialysis, there is always room at the inn. It makes us lazy as clinicians, because it is the default therapy.”
Echoing Baharani’s emphasis on the importance of peer education, Mitra then alluded to national registry and unit data suggesting that most patients who begin on in-centre haemodialysis find it “very difficult to transition out of that”. This has accelerated efforts on predialysis education. “[However], the vast majority of our patients are already on haemodialysis, and the nurses who interact with the patients have usually had a negative experience derived from patients who come to them after complications from home therapy. So, if I had to choose one intervention to improve the conversation, it would be to get satellite haemodialysis unit nurses to come in and work in home therapy centres, with the home therapy teams, to see the good aspect of home therapy care, and then create that conversation in our dialysis units that will enable a transition to home therapies,” he concluded.