Health service utilisation during the last year of life: a prospective, longitudinal study of the pathways of patients with chronic kidney disease stages 3-5.

BACKGROUND: Chronic kidney disease (CKD) is a growing global problem affecting around 10% of many countries' populations. Providing appropriate palliative care services (PCS) to those with advanced kidney disease is becoming paramount. Palliative/supportive care alongside usual CKD clinical treatment is gaining acceptance in nephrology services although the collaboration with and use of PCS is not consistent. METHODS: The goal of this study was to track and quantify the health service utilisation of people with CKD stages 3-5 over the last 12 months of life. Patients were recruited from a kidney health service (Queensland, Australia) for this prospective, longitudinal study. Data were collected for 12 months (or until death, whichever was sooner) during 2015-17 from administrative health sources. Emergency department presentations (EDP) and inpatient admissions (IPA) (collectively referred to as critical events) were reviewed by two Nephrologists to gauge if the events were avoidable. RESULTS: Participants (n = 19) with a median age of 78 years (range 42-90), were mostly male (63%), 79% had CKD stage 5, and were heavy users of health services during the study period. Fifteen patients (79%) collectively recorded 44 EDP; 61% occurred after-hours, 91% were triaged as imminently and potentially life-threatening and 73% were admitted. Seventy-four IPA were collectively recorded across 16 patients (84%); 14% occurred on weekends or public holidays. Median length of stay was 3 days (range 1-29). The median number of EDP and IPA per patient was 1 and 2 (range 0-12 and 0-20) respectively. The most common trigger to both EDP (30%) and IPA (15%) was respiratory distress. By study end 37% of patients died, 63% were known to PCS and 11% rejected a referral to a PCS. All critical events were deemed unavoidable. CONCLUSIONS: Few patients avoided using acute health care services in a 12 month period, highlighting the high service needs of this cohort throughout the long, slow decline of CKD. Proactive end-of-life care earlier in the disease trajectory through integrating renal and palliative care teams may avoid acute presentations to hospital through better symptom management and planned care pathways.

Tracking patients with advanced kidney disease in the last 12 months of life.

BACKGROUND: There is increasing recognition of the clinical need for timely and coordinated supportive and palliative care for those with terminal organ failure. OBJECTIVE: To describe symptoms, quality of life and supportive care needs in the anticipated 12-month period prior to death in adults with chronic kidney disease (CKD) stages 4 or 5. METHOD: An observational, prospective, longitudinal design was used to follow 19 patients. The measures used were the Chronic Kidney Disease-Symptom Burden Index (CKD-SBI), the Australian Karnofsky Performance Scale (AKPS), the Functional Assessment of Chronic illness Therapy Palliative-14 (FACIT PAL-14), the Assessment of Quality of Life 6 Dimensions (AQoL-6D) and the Sheffield Profile for Assessment and Referral for Care (SPARC). Data were collected at study entry and three monthly until death or study end. RESULTS: Patients' median age was 78 years (range 42-90), most were male (63%), 10 were receiving dialysis and seven died during the study. The most prevalent symptoms reported differed from those that were most troublesome. The median AKPS score did not change over time (60). Quality of life remained steady over time [FACIT-PAL median range: 43.5-46; AQoL-6D means range: 0.66 (SD 0.19) to 0.75 (SD 0.2)]. Supportive care needs were few. CONCLUSION: We found a substantial symptom burden and slow functional decline in this group of patients. Regular assessment of both symptoms and QOL is warranted particularly if clinical experience indicates that the person is likely to be in their last year of life. Integrated supportive care programmes could assist with easing symptom burden during this time.