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

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e042268
Author(s):  
John A Woods ◽  
Judith M Katzenellenbogen ◽  
Kevin Murray ◽  
Claire E Johnson ◽  
Sandra C Thompson
Keyword(s):  
Palliative Care ◽  
Cohort Study ◽  
Cultural Barriers ◽  
Survival Models ◽  
Indigenous Australians ◽  
Specialist Palliative Care ◽  
Indigenous Australian ◽  
Phase Duration ◽  
Core Element ◽  
Similar Frequency

ObjectivesAnticipation 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.DesignCohort study.SettingAustralia-wide hospital-based and community-based specialist palliative care (1 January 2010 to 30 June 2015).Participants139 556 (1502 Indigenous and 138 054 non-Indigenous) adult patients.Outcome measuresIndigenous 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.ResultsUnstable 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).ConclusionsDespite 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.

scholarly journals Hospital-based acute care in the last 30 days of life among patients with chronic disease that received early, late or no specialist palliative care: a retrospective cohort study of eight chronic disease groups

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e044196
Author(s):  
Madalene Earp ◽  
Pin Cai ◽  
Andrew Fong ◽  
Kelly Blacklaws ◽  
Truong-Minh Pham ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cohort Study ◽  
Heart Disease ◽  
Chronic Disease ◽  
Acute Care ◽  
Retrospective Cohort Study ◽  
Retrospective Cohort ◽  
Hospital Admissions ◽  
Specialist Palliative Care ◽  
Icu Admission

ObjectiveFor eight chronic diseases, evaluate the association of specialist palliative care (PC) exposure and timing with hospital-based acute care in the last 30 days of life.DesignRetrospective cohort study using administrative data.SettingAlberta, Canada between 2007 and 2016.Participants47 169 adults deceased from: (1) cancer, (2) heart disease, (3) dementia, (4) stroke, (5) chronic lower respiratory disease (chronic obstructive pulmonary disease (COPD)), (6) liver disease, (7) neurodegenerative disease and (8) renovascular disease.Main outcome measuresThe proportion of decedents who experienced high hospital-based acute care in the last 30 days of life, indicated by ≥two emergency department (ED) visit, ≥two hospital admissions,≥14 days of hospitalisation, any intensive care unit (ICU) admission, or death in hospital. Relative risk (RR) and risk difference (RD) of hospital-based acute care given early specialist PC exposure (≥90 days before death), adjusted for patient characteristics.ResultsIn an analysis of all decedents, early specialist PC exposure was associated with a 32% reduction in risk of any hospital-based acute care as compared with those with no PC exposure (RR 0.69, 95% CI 0.66 to 0.71; RD 0.16, 95% CI 0.15 to 0.17). The association was strongest in cancer-specific analyses (RR 0.53, 95% CI 0.50 to 0.55; RD 0.31, 95% CI 0.29 to 0.33) and renal disease-specific analyses (RR 0.60, 95% CI 0.43 to 0.84; RD 0.22, 95% CI 0.11 to 0.34), but a~25% risk reduction was observed for each of heart disease, COPD, neurodegenerative diseases and stroke. Early specialist PC exposure was associated with reducing risk of four out of five individual indicators of high hospital-based acute care in the last 30 days of life, including ≥two ED visit,≥two hospital admission, any ICU admission and death in hospital.ConclusionsEarly specialist PC exposure reduced the risk of hospital-based acute care in the last 30 days of life for all chronic disease groups except dementia.

scholarly journals Development and validation of a casemix classification to predict costs of specialist palliative care provision across inpatient hospice, hospital and community settings in the UK: a study protocol

BMJ Open ◽  
2018 ◽  
Vol 8 (3) ◽  
pp. e020071 ◽  
Author(s):  
Ping Guo ◽  
Mendwas Dzingina ◽  
Alice M Firth ◽  
Joanna M Davies ◽  
Abdel Douiri ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cohort Study ◽  
Phase I ◽  
Resource Use ◽  
Care Provision ◽  
Specialist Palliative Care ◽  
Community Settings ◽  
Validation Data ◽  
Patient Level ◽  
The Uk

IntroductionProvision of palliative care is inequitable with wide variations across conditions and settings in the UK. Lack of a standard way to classify by case complexity is one of the principle obstacles to addressing this. We aim to develop and validate a casemix classification to support the prediction of costs of specialist palliative care provision.Methods and analysisPhase I: A cohort study to determine the variables and potential classes to be included in a casemix classification. Data are collected from clinicians in palliative care services across inpatient hospice, hospital and community settings on: patient demographics, potential complexity/casemix criteria and patient-level resource use. Cost predictors are derived using multivariate regression and then incorporated into a classification using classification and regression trees. Internal validation will be conducted by bootstrapping to quantify any optimism in the predictive performance (calibration and discrimination) of the developed classification. Phase II: A mixed-methods cohort study across settings for external validation of the classification developed in phase I. Patient and family caregiver data will be collected longitudinally on demographics, potential complexity/casemix criteria and patient-level resource use. This will be triangulated with data collected from clinicians on potential complexity/casemix criteria and patient-level resource use, and with qualitative interviews with patients and caregivers about care provision across difference settings. The classification will be refined on the basis of its performance in the validation data set.Ethics and disseminationThe study has been approved by the National Health Service Health Research Authority Research Ethics Committee. The results are expected to be disseminated in 2018 through papers for publication in major palliative care journals; policy briefs for clinicians, commissioning leads and policy makers; and lay summaries for patients and public.Trial registration numberISRCTN90752212.

scholarly journals How are physicians delivering palliative care? A population-based retrospective cohort study describing the mix of generalist and specialist palliative care models in the last year of life

2018 ◽  
Vol 32 (8) ◽  
pp. 1334-1343 ◽  
Author(s):  
Catherine RL Brown ◽  
Amy T Hsu ◽  
Claire Kendall ◽  
Denise Marshall ◽  
Jose Pereira ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cohort Study ◽  
Retrospective Cohort Study ◽  
Retrospective Cohort ◽  
Family Physicians ◽  
Population Based ◽  
Specialist Palliative Care ◽  
Care Services ◽  
Palliative Care Services ◽  
Generalist Palliative Care

Background: To enable coordinated palliative care delivery, all clinicians should have basic palliative care skill sets (‘generalist palliative care’). Specialists should have skills for managing complex and difficult cases (‘specialist palliative care’) and co-exist to support generalists through consultation care and transfer of care. Little information exists about the actual mixes of generalist and specialist palliative care. Aim: To describe the models of physician-based palliative care services delivered to patients in the last 12 months of life. Design: This is a population-based retrospective cohort study using linked health care administrative data. Setting/participants: Physicians providing palliative care services to a decedent cohort in Ontario, Canada. The decedent cohort consisted of all adults (18+ years) who died in Ontario, Canada between April 2011 and March 2015 ( n = 361,951). Results: We describe four major models of palliative care services: (1) 53.0% of decedents received no physician-based palliative care, (2) 21.2% received only generalist palliative care, (3) 14.7% received consultation palliative care (i.e. care from both specialists and generalists), and (4) 11.1% received only specialist palliative care. Among physicians providing palliative care ( n = 11,006), 95.3% had a generalist palliative care focus and 4.7% a specialist focus; 74.2% were trained as family physicians. Conclusion: We examined how often a coordinated palliative care model is delivered to a large decedent cohort and identified that few actually received consultation care. The majority of care, in both the palliative care generalist and specialist models, was delivered by family physicians. Further research should evaluate how different models of care impact patient outcomes and costs.

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

PLoS ONE ◽  
2019 ◽  
Vol 14 (5) ◽  
pp. e0215403 ◽  
Author(s):  
John A. Woods ◽  
Jade C. Newton ◽  
Sandra C. Thompson ◽  
Eva Malacova ◽  
Hanh T. Ngo ◽  
...  
Keyword(s):  
Palliative Care ◽  
Specialist Palliative Care ◽  
Indigenous Australian ◽  
Cross Sectional

scholarly journals Duration and determinants of hospice-based specialist palliative care: A national retrospective cohort study

2018 ◽  
Vol 32 (8) ◽  
pp. 1322-1333 ◽  
Author(s):  
Matthew J Allsop ◽  
Lucy E Ziegler ◽  
Matthew R Mulvey ◽  
Sarah Russell ◽  
Ros Taylor ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cohort Study ◽  
Retrospective Cohort Study ◽  
Retrospective Cohort ◽  
Negative Binomial ◽  
Hospice Care ◽  
Advanced Disease ◽  
Community Services ◽  
Specialist Palliative Care ◽  
Organisational Factors

Background: Understanding service provision for patients with advanced disease is a research priority, with a need to identify barriers that limit widespread integration of palliative care. Aim: To identify patient and organisational factors that influence the duration of hospice-based palliative care in the United Kingdom prior to death. Design: This is a retrospective cohort study. Setting/participants: A total of 64 UK hospices providing specialist palliative care inpatient beds and community services extracted data for all adult decedents (aged over 17 years) with progressive, advanced disease, with a prior referral (e.g. inpatient, community teams, and outpatient) who died between 1 January 2015 and 31 December 2015. Data were requested for factors relating to both the patient and hospice site. Results: Across 42,758 decedents, the median time from referral to death was 48 days. Significant differences in referral to death days were found for those with cancer (53 days) and non-cancer (27 days) ( p < 0.0001). As age increases, the median days from referral to death decreases: for those under 50 years (78 days), 50–74 years (59 days), and 75 years and over (39 days) ( p = 0.0001). An adjusted multivariable negative binomial model demonstrated increasing age persisting as a significant predictor of fewer days of hospice care, as did being male, having a missing ethnicity classification and having a non-cancer diagnosis ( p < 0.001). Conclusion: Despite increasing rhetoric around early referral, patients with advanced disease are receiving referrals to hospice specialist palliative care very late in their illness trajectory. Age and diagnosis persist as determinants of duration of hospice specialist palliative care before death.

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

2020 ◽  
Vol 17 (9) ◽  
pp. 3131
Author(s):  
John A. Woods ◽  
Claire E. Johnson ◽  
Hanh T. Ngo ◽  
Judith M. Katzenellenbogen ◽  
Kevin Murray ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Rating Scale ◽  
Symptom Relief ◽  
First Episode ◽  
Indigenous Australians ◽  
Specialist Palliative Care ◽  
Community Settings ◽  
Patient Reported ◽  
Care Outcomes

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.

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

2020 ◽  
Vol 50 (1-2) ◽  
pp. 64-75
Author(s):  
John A Woods ◽  
Claire E Johnson ◽  
Samuel F Allingham ◽  
Hanh T Ngo ◽  
Judith M Katzenellenbogen ◽  
...  
Keyword(s):  
Palliative Care ◽  
Data Quality ◽  
Quality Assessment ◽  
Quantitative Research ◽  
Missing Values ◽  
Clinical Care ◽  
Indigenous Australians ◽  
Indigenous Australian ◽  
Secondary Use ◽  
Continuous Quality

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.

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