A feasibility study to track the last 12 months of life in chronic kidney disease patients: Baseline characteristics

Background Chronic kidney disease (CKD) is associated with a high symptom burden and reduced quality of life particularly in individuals who are in their final year of life. A palliative care approach that targets symptom burden would benefit many patients but few collaborative renal/palliative care services exist. Aim To track the experiences and health service utilisation of people with CKD over the last 12 months of life. Methods A longitudinal, prospective design was used to follow 19 patients attending a renal service without a formal collaborative renal/palliative care approach. Inclusion criteria were age ≥18 years, CKD stages 3-5, prognosis <12 months (using “surprise question”) and cognitively sound. Measures included modified dialysis symptom index (31 symptoms; prevalence, frequency, severity and distress), Australian Karnofsky Performance Scale scores (AKPS), and if known to a palliative care service (PCS). Results Baseline characteristics were: median age 78 years (range 42 - 90); male (n=12); CKD stages 4 (n=4) and 5 (n=15); 9 non-dialysis and 10 haemodialysis; and median AKPS score was 60 (range 40-70). The most prevalent symptoms were lack of energy (n=15, 98.95%), dry mouth (n=13, 68.42%) and dry skin (n=13, 68.42%). Lack of energy and sleep problems were the most severe and distressing symptoms. At baseline only two participants were actively engaged with a PCS. Conclusion Ascertaining changes over time in symptom burden and functionality will assist with targeting the level and type of services needed along the end-of-life trajectory in CKD, and to ensure timely and appropriate renal and palliative care is provided.