Shared hemodialysis care practice patterns and their association with shared decision-making in the United Kingdom

Background Shared hemodialysis care, or “shared care”, empowers in-center hemodialysis patients to undertake some dialysis-related tasks. Although its benefits are increasingly recognized, data on shared care is not routinely reported, and its impact on patient experience is less studied. Shared decision-making — a key component of patient experience—is consistently rated poorly by renal patients. Using data from the UK Kidney Patient Reported Experience Measure survey, we examined the variation in shared care offered across 67 UK kidney centers and assessed its association with shared decision-making scores. Methods Shared care offer and acceptance was assessed by a single survey question. A measure of shared decision-making was derived from patient responses to three questions (scored between 1=low and 7=high). Associations between shared care and shared decision-making scores were analyzed at an individual-level using linear mixed models. Results Analyses included 6,861 patients. 53% of respondents were offered shared care (46.9% in 2022), with rates from 13% to 93% between centers. Shared care was more likely to be offered to those aged 31-55 years, ethnic minorities and in satellite units. Those offered shared care gave higher scores for each question on shared decision-making, with a mean increase of 0.61 (95% CI 0.51-0.70, p<0.0001) across all questions. Conclusions Shared care participation in the UK is increasing but there remains considerable variation between centers with inequitable access to the opportunities it brings according to patient age, ethnicity and dialysis unit location. This study is the first to demonstrate a positive association between shared care and shared decision-making, suggesting that offering shared care can support shared decision-making and improve patient experience of care.