Abstract

Almost 18% of Australian Aboriginal and Torres Strait Islander (A&TSI) adults are affected by chronic kidney disease (CKD), and they are four times more likely to die from CKD as non-indigenous Australians. Moreover, the onset of the disease is often earlier in A&TSI people and they have a faster rate of progression to end-stage kidney disease (ESKD), with those living in remote regions most affected. While the supportive care needs of A&TSI people with ESKD have not been reported, the burden of disease is heavy in this population. We describe and compare the characteristics of A&TSI people and non-A&TSI people accessing a specialist kidney supportive care (KSC) service in an urban region (Brisbane, Queensland). The KSC program was implemented by Metro North Hospital & Health Service (MNHHS) in 2016 to manage symptom burden, do advance care planning and/or share the sometimes complex decision-making around dialysis options in people with advanced CKD. All 338 people referred to the program between February 2016 and November 2018 were recruited into this observational study. Data on participant demographics, co-morbidities (Charlson Co-morbidity Index), functional status (RUG-ADL scale and Australian Karnofsky Performance score) and symptom burden (IPOS-Renal) were systematically collected and analysed. Comparisons between A&TSI and non-A&TSI cohorts were tested using unpaired t-tests or chi square tests, with p<0.05 considered statistically significant. While A&TSI people are overrepresented among people with ESKD, only 4.1% (14 out of 338) of people referred to the KSC program between February 2016 and November 2018 identified as A&TSI (13 [3.8%; four female) Aboriginal and one [0.3%; female] Torres Strait Islander). A&TSI patients were significantly younger than non-A&TSI patients (median 55.5 [range 34–84] vs. 74 [27–90]; p<0.001) and had lower age-adjusted Charlson Co-morbidity Index scores (5 [2–11] vs. 6 [2–14]; p<0.005). Functional status was similar between groups with median RUG-ADL scores of 4 (representing independence with activities of daily living) in both groups and Australian Karnofsky Performance scores of 60 (representing moderately impaired functional status) in both groups. There was a trend towards a higher proportion of A&TSI patients currently treated with dialysis or on a dialysis pathway (71% vs. 49% non-A&TSI; p=0.09). The most common reason for referral in both groups was symptom management, and symptom scores at baseline were similar between groups. A&TSI people with ESKD access supportive care at a younger age than non-A&TSI people. They appear to have a lower co-morbidity but symptom burdens are as high as non-A&TSI people in the program. Effective management of symptoms in this group, who are likely to be actively pursuing dialysis, is key to delivering a better quality of life.

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