Patients’ Perspectives of Fluid Management during Haemodialysis

Kidney failure can be treated by a kidney replacement therapy. Whilst transplantation remains the best option, it is not always possible or desirable, and haemodialysis (HD) is the most common alternative. HD usually takes
place in a hospital or clinic (incentre), where patients typically have three sessions weekly, supported by healthcare staff. A smaller number of patients treat themselves at home, with minimal clinical support. Deciding what volume of fluid should be removed remains challenging: complications linked to excessive fluid removal are common and debilitating and “sharing decisions about my care” has consistently been rated one of the poorest aspects of patients’ experiences. However, patients’ involvement in, understanding and experience of, fluid management is largely unexplored.

This thesis examines patients’ perspectives of fluid management, and a questionnaire was developed for this purpose, completed by 1189 incentre and 99 home patients. Patients receiving incentre HD felt in control over fluid removal decisions, yet substantial knowledge gaps, underreporting of symptoms, and variation between NHS Trusts were highlighted. When comparing to patients receiving home HD, home patients typically responded
more favourably on knowledge, adherence, and perception of control items than those receiving incentre HD, yet there were still substantial gaps in knowledge. The evident knowledge gaps highlight the need for patient education. A systematic review of studies exploring video education suggested this could be an effective modality to enhance patient knowledge.

Fluid management remains one of the most challenging aspects of HD. This thesis underlines that patients are typically involved in fluid management decisions despite being underinformed and not disclosing relevant symptoms to staff, with substantial variation across NHS Trusts. This highlights the need for formalisation of patients’ role in fluid management decisions, centralised patient education, and support for consistent reporting and incorporation of relevant symptoms into fluid management protocols.