Achieving needs-based end-of-life services: A prospective, longitudinal study of pathways of patients with Stage 3-5 Chronic Kidney Disease

Project dates:
Commenced: 2014
Completion Due: 2015

There is increasing recognition of the clinical need for timely and coordinated supportive and palliative care for those with terminal organ failure. This prospective, longitudinal study sought to determine how patients with Stage 3-5 Chronic Kidney Disease (CKD): i) interact with health services, particularly those associated with meeting health and supportive care needs at end of life; and ii) perceive their symptoms, experience with health services, quality of life (QOL) and supportive care needs.

Data were collected at regular intervals over 12 months (or until death, which ever came sooner) from Queensland Health administrative records and from participant self-report via interviewer administered questionnaires. The study enabled preliminary testing of: a) factors that influence access to specialist palliative care services (SPCS); b) factors that influence use of use of emergency services; and c) comparison of patients’ outcomes of those who do and do not access SPCS.

Project outcomes:

Substantial symptom burden and slow functional decline were found in these patients. Few patients avoided using acute health care services in the study period.