Barriers to the elective start of renal replacement therapy: what are they, why do they occur and how can we overcome them?

Patients known to the kidney care services before needing dialysis should not start dialysis urgently through a temporary vascular access catheter, as this is likely to lead to increased morbidity and mortality. The aim of this study was to understand why patients within the East Midlands Renal Network start dialysis urgently when they have been known to the kidney care services for four months or more, and to make some recommendations on how to prevent this. An observational case-note survey found that patients who had an urgent dialysis start were more ill than those who had undergone elective dialysis initiation. Almost all had been known to the service for at least a year. They were less likely to have been seen in a predialysis clinic or to have attended a predialysis education session and older age was a significant barrier to an elective start. A qualitative study of patients who had recently started on dialysis showed that many had not been adequately supported psychologically, nor had their educational needs relating to self care and dialysis addressed throughout the disease process. A qualitative study of healthcare professionals suggested that they perceive distinct roles for themselves and for patients, with those who don't conform being judged unfavourably. Both studies revealed that are difficulties with of the timing of referrals within the kidney care service. Case studies highlighted the difference in perceptions of care between patients and healthcare professionals, the highly individual nature of involvement in illness management, and some difficulties with intercultural perceptions. Decision making preference varied but overall there was a lack of shared decision making. This thesis shows the need for a shift in the relationship between healthcare professionals and patients towards a more patient-centred, personalised approach, with efforts made to tailor education and decision making styles to each patient.