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

BACKGROUND: There is increasing worldwide interest in person-centred care in haemodialysis and home haemodialysis (HHD). Intradialytic fluid management is a vital component of haemodialysis, and often a shared decision, yet patients' perspectives and experience of related decisions are largely unexplored. OBJECTIVES: To explore the perspectives of patients receiving home or incentre haemodialysis (IHD), in relation to intradialytic fluid management. DESIGN: A multicentre cross-sectional survey. PARTICIPANTS: Eight hundred and thirty-nine patients receiving IHD and 99 patients receiving HHD, across six English renal units. MEASUREMENTS: Self-reported measures of understanding, experiences and control of fluid management, and willingness to achieve target weight. An objective test of patients' ability to relate common signs and symptoms to fluid overload or excessive ultrafiltration. RESULTS: Patients receiving HHD had greater knowledge than those receiving IHD (66.1% vs. 42.3%, p < 0.001) about causes of common signs and symptoms which remained when controlling for age, education and years since beginning haemodialysis. Patients receiving HHD felt more in control of and had greater self-reported adherence to fluid management (p < 0.01), yet knowledge gaps existed in both cohorts. CONCLUSIONS: Greater patient knowledge and its practice in HHD may contribute to improved fluid balance and outcomes. Whilst patient selection may contribute towards these differences, the training patients receive when opting for HHD and subsequent experience are likely to be key contributing factors. Integrating aspects of education on fluid management from HHD training programmes should be considered in IHD, and further targeted, robust education remains an unmet need.

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

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.

Patients' perceptions of their experience, control and knowledge of fluid management when receiving haemodialysis.

BACKGROUND: Person-centred care is increasingly promoted, empowering patients to become more involved in their treatment rather than being passive recipients of care (Barnes et al. 2013). Haemodialysis is typically required three times a week, with fluid management decision-making occurring at each treatment session (Ahmed et al. 2017). However, no research has yet explored how haemodialysis patients' perceptions of their fluid management may impact upon this decision-making. OBJECTIVES: This study sought to explore patients' perceptions of their fluid management. METHOD: DESIGN, PARTICIPANTS & APPROACH: Semi-structured interviews were conducted with 12 patients undergoing in-hospital haemodialysis treatment. These were digitally recorded one-to-one interviews to allow for verbatim transcription. The data was analysed by thematic analysis, generating thematic patterns across patients' experiences, control and knowledge of their fluid management. RESULTS: Five themes were produced: determining who has the expertise, impediments affecting patients' lifestyle, additional difficulty of experiencing comorbidities, perceived quality of care, and establishing consistency. CONCLUSIONS: Despite varied levels of patient participation in their treatment, overall there appears to be a limited understanding of specific areas of fluid management. The implications for further research and the development of shared-care are discussed.