Patient perspectives of target weight management and ultrafiltration in haemodialysis: a multi-center survey

Abstract

Background Decisions around planned ultrafiltration volumes are the only part of the haemodialysis prescription decided upon at every session. Removing too much fluid or too little is associated with both acute symptoms and long-term outcomes. The degree to which patients engage with or influence decision-making is not clear. We explored patient perspectives of prescribing ultrafiltration volumes, their understanding of the process and engagement with it. Methods A questionnaire developed for this study was administered to 1077 patients across 10 UK Renal Units. Factor analysis reduced the dataset into factors representing common themes. Relationships between survey results and factors were investigated using regression models. ANCOVA was used to explore differences between Renal Units. Results Patients generally felt in control of their fluid management and that they were given the final say on planned ultrafiltration volumes. Around half of the respondents reported they take an active role in their treatment. However, respondents were largely unable to relate signs and symptoms to fluid management practice and a third said they would not report common signs and symptoms to clinicians. A fifth of patients reported not to know how ultrafiltration volumes were calculated. Patients responded positively to questions relating to healthcare staff, though with significant variation between units, highlighting differences in perception of care. Conclusions Despite a lack of formal acknowledgement in fluid management protocols, patients have significant involvement in decisions regarding fluid removal during dialysis. Furthermore, substantial gaps remain in patient knowledge and engagement. Formalizing the role of patients in these decisions, including patient education, may improve prescription and achievement of target weights.

Influence of AI-based decision support on shared decision making in hemodialysis: a Wizard of Oz experiment

“…We confirmed that hemodialysis patients take over an active role in their regular treatment, which is not limited to the dialysis session, but also includes patient self-monitoring at home, and dietary aspects, which has been reported before. 17 With respect to SDM, hemodialysis represents a very unique situation, since routine decisions such as the amount of fluid removal have to be made at the beginning of every dialysis session. While we found that caregivers proactively asked for the patients' suggestions and followed those very closely with respect to fluid removal, we did not study other aspects of the treatment, e.g.…”

“…We confirmed that hemodialysis patients take over an active role in their regular treatment, which is not limited to the dialysis session, but also includes patient self-monitoring at home, and dietary aspects, which has been reported before. 17…”

“…(2) From our own experience, as well as the literature, we know that while patient involvement into decision making about fluid removal in dialysis is variable, many patients take an active role and even have the final say with respect to ultrafiltration volume. 17 (3) Other forms of automation, such as biofeedback systems including blood volume monitoring, are already incorporated in the dialysis treatment. 18 These can be used to contrast the specific challenges of AI-based decision support.…”

Patients' perspectives of fluid management: A multicentre comparative study of home and incentre haemodialysis

“…To facilitate comparisons, variables were defined as they had in the previous study (Keane et al ., 2021). Categorical predictors with more than two groups were grouped into binary variables: age (18–65 and 66+ years); ethnicity (Caucasian and non‐Caucasian); education (up to school age 16 years and above school age 16 years); years since beginning HD (up to 3 and more than 3); daily urine output (less than a cupful and more than a cupful).…”

“…Our previous research surveyed over 1000 patients receiving IHD about their knowledge, experiences, and engagement with intradialytic fluid management (Keane et al ., 2021). This study primarily identified considerable knowledge gaps and underreporting of common signs and symptoms that can occur during HD, yet there was substantial patient involvement in deciding upon ultrafiltration volumes (Keane et al ., 2021). This paper focusses on the differences in patients' perspectives in HHD compared to IHD across the same English units practicing both these modalities.…”