Abstract
Background: Indigenous Australian people have distinctive end-of-life experiences—they develop common cancers and other life-limiting illnesses at younger average ages than other Australians, more commonly live outside metropolitan areas, and frequently encounter healthcare-related cultural barriers. Detailed large-scale appraisals of palliative care services for Indigenous Australians are lacking.
Aims: Using a large multi-jurisdictional specialist palliative care dataset, to compare Indigenous with non-Indigenous patients on (i) representation in care by participating services, (ii) demographics and diagnosis, and (iii) equity of care received according to benchmark-based measures.
Methods: Quantitative analyses: detailed initial data quality assessment, multiple regression and matching techniques to minimise confounding, multiple imputation to handle missing data.
Results: The dataset (1/1/2010–30/6/2015) comprised 144,951 subjects, with 1515 identified as Indigenous (1.1%, far fewer than expected from population data). Patients missing an Indigenous identifier (4,998; 3.5%) diminished markedly over the study period, without a corresponding increase in the proportion identified as Indigenous, suggesting no substantial pool of unidentified Indigenous patients. Indigenous compared with non-Indigenous patients were younger (average 62.8 versus 73.0 years at entry, p<0.001), and more frequently resided outside major cities (45.3% versus 21.8%, p<0.001). A similar majority in both groups had cancer as the principal diagnosis (79.8% versus 79.2%, p=0.567). Indigenous patients more often encountered delays in care initiation (adjusted odds ratio 1.41, 95% confidence interval [CI] 1.07–1.86). However, Indigenous and non-Indigenous patients experienced similar frequencies of unanticipated/“breakthrough” problems and (adjusted relative risk [aRR] 1.04, 95% CI 0.99–1.09) and delayed institution of management for such problems (aRR 1.00, 95% CI 0.90–1.12). Symptom/problem trajectory analyses are nearing completion.
Conclusions: Indigenous Australians with advanced cancer and other life-limiting illnesses are considerably under-represented in specialist palliative care nationwide, likely reflecting substantial access barriers, but those able to access specialist services experience no consistent pattern of measurable inequity in end-of-life care.
Aims: Using a large multi-jurisdictional specialist palliative care dataset, to compare Indigenous with non-Indigenous patients on (i) representation in care by participating services, (ii) demographics and diagnosis, and (iii) equity of care received according to benchmark-based measures.
Methods: Quantitative analyses: detailed initial data quality assessment, multiple regression and matching techniques to minimise confounding, multiple imputation to handle missing data.
Results: The dataset (1/1/2010–30/6/2015) comprised 144,951 subjects, with 1515 identified as Indigenous (1.1%, far fewer than expected from population data). Patients missing an Indigenous identifier (4,998; 3.5%) diminished markedly over the study period, without a corresponding increase in the proportion identified as Indigenous, suggesting no substantial pool of unidentified Indigenous patients. Indigenous compared with non-Indigenous patients were younger (average 62.8 versus 73.0 years at entry, p<0.001), and more frequently resided outside major cities (45.3% versus 21.8%, p<0.001). A similar majority in both groups had cancer as the principal diagnosis (79.8% versus 79.2%, p=0.567). Indigenous patients more often encountered delays in care initiation (adjusted odds ratio 1.41, 95% confidence interval [CI] 1.07–1.86). However, Indigenous and non-Indigenous patients experienced similar frequencies of unanticipated/“breakthrough” problems and (adjusted relative risk [aRR] 1.04, 95% CI 0.99–1.09) and delayed institution of management for such problems (aRR 1.00, 95% CI 0.90–1.12). Symptom/problem trajectory analyses are nearing completion.
Conclusions: Indigenous Australians with advanced cancer and other life-limiting illnesses are considerably under-represented in specialist palliative care nationwide, likely reflecting substantial access barriers, but those able to access specialist services experience no consistent pattern of measurable inequity in end-of-life care.
Original language | English |
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Publication status | Published - 18 Sep 2019 |
Event | 2nd World Indigenous Cancer Conference - Calgary, Canada Duration: 17 Sep 2019 → 19 Sep 2019 |
Conference
Conference | 2nd World Indigenous Cancer Conference |
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Abbreviated title | WICC 2019 |
Country/Territory | Canada |
City | Calgary |
Period | 17/09/19 → 19/09/19 |