Why do more patients not choose haemodialysis at home? That was the question Leah McLaughlin (Bangor University, Bangor, UK) sought to answer for the audience at UK Kidney Week 2023 (5–7 June, Newport, UK) with a presentation on recent research that formed part of a broader session on unique kidney care insights from Welsh researchers and clinicians.
The Dialysis Options and Choices Study, McLaughlin outlined, was a coproductive qualitative study “underpinned by the Making Good Decisions in Collaboration shared decision model”. It employed semi-structured interviews with a purposive sample from the period of February 2019 through to January 2020. The full paper is published in BMJ Open by McLaughlin as well as first author Jane Noyes (Bangor University).
Participants numbered 95, including 39 healthcare professionals, 37 patients, and 19 family members across five Welsh kidney services. Coproduction was supported by 18 professionals, 18 patients, and eight family members. The study team routinely collected NHS data as part of the research.
“Many patients are asymptomatic, and those with symptoms did not always attribute it to their kidney,” McLaughlin said as she explored the findings of the process. She added that many patients “catastrophised future treatment”, particularly dialysis, which they feared would transform them into “a burden”. This, in turn, complicated decision-making around how dialysis would be performed.
“Most people’s image of dialysis was in a hospital […] Conversations about switching to a home-based option were met negatively, and families were rarely included in early discussions,” McLaughlin explained. Patients also expressed a sense of being overwhelmed by the number of choices with which they were presented before initiating dialysis, with “little or no opportunities to follow up on their concerns”.
The perspective of healthcare professionals differed. They agreed that home dialysis was often not prioritised, but cited “embedded culture”, noting that staffing pressure made it difficult to find the “motivation for change” that would lead to better provision of home haemodialysis. Though it is prioritised in the hierarchy of treatments, many suggested, there were, in reality, “challenges in delivering the home agenda consistently”.
In-centre dialysis proved to maintain a host of advantages over home dialysis for some patients. Not least among the concerns around home dialysis that they expressed were fears that self-administering the treatment might lead to mistakes causing disfigurement or infections, as well as potential social isolation. There were also concerns from families, “not always initially recognised”, about becoming carers, and the fear of “turning their house into a hospital”. Home dialysis was not always viewed as providing greater lifestyle benefit, McLaughlin said.
What recommendations should be made, McLaughlin asked, in light of these findings? More carefully tailored shared decision-making should be implemented, she suggested first, paying particular attention to patients who may prefer a different option to home dialysis. Patients’ own preconceived or mistaken ideas should be “gently challenged”, while healthcare professionals should have “up-to-date knowledge” to offer the best advice. This is in light of reports from interviewed professionals that they were frustrated by patients suddenly changing their choice of modality following years of differing advice.
Alongside McLaughlin’s presentation, other insights from the Shared Learning from Wales session included details on a clinical peer review programme in kidney services in Wales as a cost-effective means of improving care. Other presentations touched on digital integration in Welsh National Health Service (NHS) kidney care as well as the Wales Kidney Research Unit’s work to involve patients in research.
