Occurrence and timely management of problems requiring prompt intervention among Indigenous compared with non-Indigenous Australian palliative care patients: a multijurisdictional cohort study.

OBJECTIVES: Anticipation and prompt relief of symptoms among patients with a life-limiting illness is a core element of palliative care. Indigenous Australians commonly encounter cultural barriers in healthcare that may impair outcomes. The Palliative Care Outcomes Collaboration collects patient care data for the purposes of continuous quality improvement and benchmarking, with each recorded care episode divided into phases that reflect a patient's condition. We aimed to investigate differences between Indigenous and non-Indigenous patients in the occurrence and duration of 'unstable' phases (which indicate unanticipated deterioration in a patient's condition or circumstances), and determine attainment of the relevant benchmark (resolution of unstable phases in ≤3 days in 90% of cases) for both groups. DESIGN: Cohort study. SETTING: Australia-wide hospital-based and community-based specialist palliative care (1 January 2010 to 30 June 2015). PARTICIPANTS: 139 556 (1502 Indigenous and 138 054 non-Indigenous) adult patients. OUTCOME MEASURES: Indigenous and non-Indigenous patients were compared on (1) the risk of a phase being categorised as unstable, (2) the duration of unstable phases, and (3) the risk of unstable phases being prolonged (>3 days). Crude and adjusted estimates were produced from three-level robust Poisson regression and complementary log-log discrete time survival models. RESULTS: Unstable phases occurred with similar frequency overall among Indigenous and non-Indigenous patients (adjusted relative risks 1.06; 95% CI 1.00 to 1.11; not significant after correction for multiple comparisons). The duration and risk of prolongation of unstable phases were similar in both patient groups, with no significant differences evident among subgroups. The benchmark was not met for either Indigenous or non-Indigenous patients (unstable phase duration >3 days in 24.3% vs 25.5%; p=0.398). CONCLUSIONS: Despite well-documented shortcomings of healthcare for Indigenous Australians, there is no clear evidence of greater occurrence or prolongation of unanticipated problems among Indigenous patients accessing specialist palliative care services in hospital or the community.

Collaborative data familiarisation and quality assessment: Reflections from use of a national dataset to investigate palliative care for Indigenous Australians.

BACKGROUND: Data quality is fundamental to the integrity of quantitative research. The role of external researchers in data quality assessment (DQA) remains ill-defined in the context of secondary use for research of large, centrally curated health datasets. In order to investigate equity of palliative care provided to Indigenous Australian patients, researchers accessed a now-historical version of a national palliative care dataset developed primarily for the purpose of continuous quality improvement. OBJECTIVES: (i) To apply a generic DQA framework to the dataset and (ii) to report the process and results of this assessment and examine the consequences for conducting the research. METHOD: The data were systematically examined for completeness, consistency and credibility. Data quality issues relevant to the Indigenous identifier and framing of research questions were of particular interest. RESULTS: The dataset comprised 477,518 records of 144,951 patients (Indigenous N = 1515; missing Indigenous identifier N = 4998) collected from participating specialist palliative care services during a period (1 January 2010-30 June 2015) in which data-checking systems underwent substantial upgrades. Progressive improvement in completeness of data over the study period was evident. The data were error-free with respect to many credibility and consistency checks, with anomalies detected reported to data managers. As the proportion of missing values remained substantial for some clinical care variables, multiple imputation procedures were used in subsequent analyses. CONCLUSION AND IMPLICATIONS: In secondary use of large curated datasets, DQA by external researchers may both influence proposed analytical methods and contribute to improvement of data curation processes through feedback to data managers.

Symptom-Related Distress among Indigenous Australians in Specialist End-of-Life Care: Findings from the Multi-Jurisdictional Palliative Care Outcomes Collaboration Data.

Symptom relief is fundamental to palliative care. Aboriginal and Torres Strait Islander (Indigenous) Australians are known to experience inequities in health care delivery and outcomes, but large-scale studies of end-of-life symptoms in this population are lacking. We compared symptom-related distress among Indigenous and non-Indigenous Australian patients in specialist palliative care using the multi-jurisdictional Palliative Care Outcomes Collaboration dataset. Based on patient-reported rating scale responses, adjusted relative risks (aRRs) stratified by care setting were calculated for occurrence of (i) symptom-related moderate-to-severe distress and worsening distress during a first episode of care and (ii) symptom-related moderate-to-severe distress at the final pre-death assessment. The p-value significance threshold was corrected for multiple comparisons. First-episode frequencies of symptom-related distress were similar among Indigenous (n = 1180) and non-Indigenous (n = 107,952) patients in both inpatient and community settings. In final pre-death assessments (681 Indigenous and 67,339 non-Indigenous patients), both groups had similar occurrence of moderate-to-severe distress when care was provided in hospital. In community settings, Indigenous compared with non-Indigenous patients had lower pre-death risks of moderate-to-severe distress from overall symptom occurrence (aRR 0.78; p = 0.001; confidence interval [CI] 0.67-0.91). These findings provide reassurance of reasonable equivalence of end-of-life outcomes for Indigenous patients who have been accepted for specialist palliative care.

Indigenous compared with non-Indigenous Australian patients at entry to specialist palliative care: Cross-sectional findings from a multi-jurisdictional dataset.

BACKGROUND: There are few quantitative studies on palliative care provision to Indigenous Australians, a population known to experience distinctive barriers to quality healthcare and to have poorer health outcomes than other Australians. OBJECTIVES: To investigate equity of specialist palliative care service provision through characterising and comparing Indigenous and non-Indigenous patients at entry to care. METHODS: Using data (01/01/2010-30/06/2015) from all services participating in the multi-jurisdictional Palliative Care Outcomes Collaboration, Indigenous and non-Indigenous patients entering palliative care were compared on proportions vis-à-vis those expected from national statutory datasets, demographic characteristics, and entry-to-care status across fourteen 'problem' domains (e.g., pain, functional impairment) after matching by age, sex, and specific diagnosis. RESULTS: Of 140,267 patients, 1,465 (1.0%, much lower than expected from statutory data) were Indigenous, 133,987 (95.5%) non-Indigenous, and 4,905 (3.5%) had a missing identifier. The proportion of patients with a missing identifier diminished markedly over the study period, without a corresponding increase in the proportion identified as Indigenous. Indigenous compared with non-Indigenous patients were younger (mean 62.8 versus 73.0 years, p<0.001), a higher proportion were female (51.5% versus 46.3%; p<0.001) or resided outside major cities (44.2% versus 21.5%, p<0.001). Across all domains, Indigenous compared with matched non-Indigenous patients had lower or equal risk of status requiring prompt intervention. CONCLUSIONS: Indigenous patients (especially those residing outside major cities) are substantially under-represented in care by services participating in the nationwide specialist palliative care Collaboration, likely reflecting widespread access barriers. However, the similarity of status indicators among Indigenous and non-Indigenous patients at entry to care suggests that Indigenous patients who are able to access these services do not disproportionately experience clinically important impediments to care initiation.

Delay in commencement of palliative care service episodes provided to Indigenous and non-Indigenous patients: cross-sectional analysis of an Australian multi-jurisdictional dataset.

BACKGROUND: Rapid effective responsiveness to patient needs is pivotal to high quality palliative care. Aboriginal and Torres Strait Islander (Indigenous) people are susceptible to life-limiting illnesses at younger ages than other Australians and experience inequity of health service provision. The Palliative Care Outcomes Collaboration collects Australia-wide health service data on patient care, and has established performance benchmarks for specialist palliative care services. We investigated whether the benchmark for timely commencement of palliative care episodes (occurrence of delay >1 day after being designated 'ready for care' in <10% instances) is being met for Indigenous Australians in participating services. Additionally, we investigated the association between identification as Indigenous and delay. METHODS: Using multi-jurisdictional Palliative Care Outcomes Collaboration data, this cross-sectional analytical study investigated all episodes of care (n = 84,238) provided to patients ≥18 years (n = 61,073: Indigenous n = 645) in hospital and community settings commenced and completed during the period 01/07/2013-30/06/2015. Proportions of episodes resulting in delay were determined. Crude and adjusted odds of delay among Indigenous compared with non-Indigenous patients were investigated using multiple logistic regression, with missing data handled by multiple imputation. RESULTS: The benchmark was met for both Indigenous and non-Indigenous patients (delay in 8.3 and 8.4% episodes respectively). However, the likelihood of delay was modestly higher in episodes provided to Indigenous than non-Indigenous patients (adjusted odds ratio [aOR], 1.41; 95% confidence interval [CI] 1.07-1.86). Excess delay among Indigenous patients was accentuated in first episodes (aOR, 1.53; 95% CI 1.14-2.06), in patients aged < 65 years (aOR, 1.66; 95% CI 1.14-2.41), and among those residing in Inner Regional areas (aOR, 1.97; 95% CI 1.19-3.28), and also approached significance among those in outer regional, remote and very remote areas collectively (aOR, 1.72; CI 0.97-3.05). CONCLUSIONS: Although the timeliness benchmark is being met for Indigenous Australians in palliative care, they may experience delayed initiation of care episodes, particularly if younger, and especially at first encounter with a service. Qualitative research is required to explore determinants of delay in initiating palliative care episodes. The timeliness of initial referral for specialist palliative care in this population remains to be determined.

Key features of palliative care service delivery to Indigenous peoples in Australia, New Zealand, Canada and the United States: a comprehensive review.

BACKGROUND: Indigenous peoples in developed countries have reduced life expectancies, particularly from chronic diseases. The lack of access to and take up of palliative care services of Indigenous peoples is an ongoing concern. OBJECTIVES: To examine and learn from published studies on provision of culturally safe palliative care service delivery to Indigenous people in Australia, New Zealand (NZ), Canada and the United States of America (USA); and to compare Indigenous peoples' preferences, needs, opportunities and barriers to palliative care. METHODS: A comprehensive search of multiple databases was undertaken. Articles were included if they were published in English from 2000 onwards and related to palliative care service delivery for Indigenous populations; papers could use quantitative or qualitative approaches. Common themes were identified using thematic synthesis. Studies were evaluated using Daly's hierarchy of evidence-for-practice in qualitative research. RESULTS: Of 522 articles screened, 39 were eligible for inclusion. Despite diversity in Indigenous peoples' experiences across countries, some commonalities were noted in the preferences for palliative care of Indigenous people: to die close to or at home; involvement of family; and the integration of cultural practices. Barriers identified included inaccessibility, affordability, lack of awareness of services, perceptions of palliative care, and inappropriate services. Identified models attempted to address these gaps by adopting the following strategies: community engagement and ownership; flexibility in approach; continuing education and training; a whole-of-service approach; and local partnerships among multiple agencies. Better engagement with Indigenous clients, an increase in number of palliative care patients, improved outcomes, and understanding about palliative care by patients and their families were identified as positive achievements. CONCLUSIONS: The results provide a comprehensive overview of identified effective practices with regards to palliative care delivered to Indigenous populations to guide future program developments in this field. Further research is required to explore the palliative care needs and experiences of Indigenous people living in urban areas.