The impact of renal palliative service on patient outcomes and caregiver stress burden

Abstract

Patients with end-stage kidney disease (ESKD) who are not on dialysis often experience significant symptoms and psychosocial stress, and their families also have considerable caregiver burdens. Renal palliative care (RPC) emerges as an important management strategy in ESKD patients not on dialysis and shows growing demands in different localities including Hong Kong. There are substantial differences in the healthcare set-up and culture between different localities. In this context, data regarding the effect of RPC on symptom alleviation and psychosocial issues in Asian ESKD patients is lacking. The RPC service in Hong Kong West Cluster started in 2012. This thesis investigated the impact of RPC on clinical outcomes and psychosocial aspects of local ESKD patients who are not on dialysis. Anaemia is a common symptom that leads to fatigue and acute admissions in ESKD patients. Data from this thesis demonstrated that the use of erythropoietin-stimulating agents in RPC patients could improve haemoglobin levels and fatigue and reduced all-cause hospitalizations. Fluid overload is also a common complication in ESKD patients not on dialysis. My findings showed that metolazone, when added to loop diuretics, could effectively manage fluid overload in RPC patients. In addition, a psycho-educational programme on fluid intake was also effective in improving fluid control, oedema, dyspnoea, sleep quality, and reduction of hospital admissions related to fluid overload. My work also showed that sertraline could improve itchiness that was refractory to antihistamines. Another study revealed that a considerable proportion of RPC patients experienced pain, of which more than 50% were moderate to severe at presentation. My findings showed that the collaborative RPC approach might help alleviate pain symptoms. Measures implemented to improve the psychosocial wellbeing of ESKD patients and their family included an intensified follow-up schedule under a dedicated RPC outpatient service, as well as Advanced Care Planning (ACP) and Enhanced Psychosocial Support (EPSS) programmes. The results showed that intensified outpatient follow-up improved clinic attendance rates and reduced unnecessary hospital admissions. The ACP programme contributed to a high concordance rate between the final wish of patients and the type of end-of-life care they did receive, thereby improving patient and family satisfaction. The EPSS programme led to early improvement of family burden and anxiety scores observable within 3 months. The findings presented in this thesis demonstrate the benefits of RPC on symptom alleviation, healthcare service utilization, and the psychosocial wellbeing of patients and their family.