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Abstract Background A range of health outcomes at a population level are related to differences in levels of social disadvantage. Understanding the impact of any such differences in palliative care is important. The aim of this study was to assess, by level of socio-economic disadvantage, referral patterns to specialist palliative care and proximity to inpatient services. Methods All inpatient and community palliative care services nationally were geocoded (using postcode) to one nationally standardised measure of socio-economic deprivation – Socio-Economic Index for Areas (SEIFA; 2006 census data). Referral to palliative care services and characteristics of referrals were described through data collected routinely at clinical encounters. Inpatient location was measured from each person’s home postcode, and stratified by socio-economic disadvantage. Results This study covered July – December 2009 with data from 10,064 patients. People from the highest SEIFA group (least disadvantaged) were significantly less likely to be referred to a specialist palliative care service, likely to be referred closer to death and to have more episodes of inpatient care for longer time. Physical proximity of a person’s home to inpatient care showed a gradient with increasing distance by decreasing levels of socio-economic advantage. Conclusion These data suggest that a simple relationship of low socioeconomic status and poor access to a referral-based specialty such as palliative care does not exist. Different patterns of referral and hence different patterns of care emerge.

Background: An innovative New South Wales government funded statewide Cannabis Medicines Advisory Service (CMAS) operated between January 2018 and June 2022. The service provided comprehensive patient-specific and evidence-based information to support health professionals in prescribing and patient care decisions. This study aimed to describe real-world data collected by CMAS., Methods: A sub-set of de-identified, patient-specific enquiries collected between January 2021 and June 2022 (n = 123/567; 21.7%) were analyzed using R version 4.2.1. Diagnosis, indication, and comorbidities were coded using Medical Dictionary for Regulatory Activities (MedDRA) terminology., Results: Most patient-specific enquiries from medical practitioners were from general practitioners (n = 103/123; 83.7%). Female (n = 53/123; 43.1%) and male (n = 59/123; 48.0%) patients were similarly represented. Sex was not specified for 8.9% (n = 11/123) of patients. The mean age of patients was 52.1 years (range <10-90). The most common three diagnoses were osteoarthritis, anxiety, and chronic pain. Indications that were most frequently reported included chronic pain, anxiety, back pain, non-neuropathic pain, and insomnia. Comedications were most commonly non-opioid and opioid analgesics and antidepressants. Most practitioners were considering prescribing a cannabidiol (CBD) product for their patient. Cannabinoid composition selection guidance provided by CMAS was predominantly (delta-9-tetrahydrocannabinol) THC:CBD ~1:1, followed by CBD-only products. CMAS was contacted by health professionals regarding the management of potential adverse events for five patients., Conclusion: The findings of this study shed light on the information medical practitioners were seeking to inform their clinical decision-making about medical cannabis and can inform the development of clinical guidance resources., (© 2024 The Author(s). Neuropsychopharmacology Reports published by John Wiley & Sons Australia, Ltd on behalf of The Japanese Society of Neuropsychopharmacology.)

Introduction Patients with chronic pain (CP) are frequent users of general practitioners (GPs). Aim This study aimed to assess factors associated with the rate of GP visits related to pain in patients with CP. Methods This study used data collected by adult specialist pain management services (SPMS) that participated in the electronic Persistent Pain Outcomes Collaboration (ePPOC) in Australia. Adult patients (18 years or older) with CP (duration greater than 3 months) who were referred to SPMS from the calendar year 2015-2021 were included (N  = 84 829). Results Patients who reported severe anxiety, stress, pain, pain interference, pain catastrophising and severely impaired pain self-efficacy were more likely to seek help from a GP. Patients with longer pain duration had a lower rate of GP visits. The rate of GP visits was 1.22 (IRR = 1.22, 95% CI: 1.19, 1.26) times higher in patients with severe pain severity, compared to patients with mild pain severity. Patients who used opioids were more likely to visit a GP (IRR = 1.32, 95% CI: 1.30, 1.34) than those who were not using opioids. Discussions More than half of the adult CP patients had greater than three GP visits in the 3 months before referral. This study would indicate that some patients may attend their GP to seek an opioid prescription. Given the rising use of opioids nationally, future study is required on opioid users' GP visitation practices. Additionally, the inverse association between pain duration and the rate of GP visits warrants further exploration.

Since the establishment of the electronic Persistent Pain Outcomes Collaboration (ePPOC) in 2013, ongoing improvements in benchmarking and quality improvement activities have provided the opportunity for ePPOC to grow to support more than one hundred adult and pediatric services delivering care to Individuals living with persistent pain throughout Australia and New Zealand. These improvements straddle multiple domains, including benchmarking and indicators reports, internal and external research collaboration and the integration of quality improvement initiatives with pain services. This paper outlines improvements undertaken and lessons learned in relation to the growth and maintenance of a comprehensive outcomes registry and its articulation with pain services and the wider pain sector., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (© 2023 Holloway, Allingham, Bryce, Cameron, Cook and Shebeshi.)

Objective The aim of this study was to assess the unmet need for palliative and other end-of-life care, as well as the sociodemographic and diagnostic factors associated with suboptimal access, among residents in an Australian region. Methods A cross-sectional descriptive and analytical study was performed using non-identifiable linked data from four administrative and two clinical datasets. The study population comprised 3175 patients aged ≥15 years who died in hospital in 2016 and 2017. The main outcome measures were the proportion of decedents potentially benefitting from end-of-life care and receiving end-of-life care. Results An estimated 74.8% of decedents needed palliative or other end-of-life care in the year before death. Approximately 13.3% did not receive any end-of-life care despite its potential benefit. The highest proportions with 'unmet need' were decedents with chronic obstructive pulmonary disease (31.0%) and heart failure (26.3%). Adjusting for sociodemographic and diagnostic factors, access was lowest among those aged <65 years (adjusted odds ratio (aOR) 0.44; 95% confidence interval (CI) 0.31-0.64) and those with heart failure (aOR 0.58; 95% CI 0.47-0.72). Conclusions Estimates of need and access provide a sound basis for planning local palliative and end-of-life care services. These methods can be used on an ongoing basis to monitor service delivery. What is known about this topic? There is a small but expanding literature on estimating the need for palliative care at a population level. There is a lack of data regarding access to palliative and other end-of-life care across multiple settings (e.g. home, specialist palliative care unit, hospital) and patient groups (e.g. defined by sociodemographics and diagnostics). What does this paper add? The study builds on previously used methods for estimating the need for palliative care, with some refinements, including the addition of 'other clinical indications' and the use of weights to derive more realistic estimates. The estimates of need are consistent with recent estimates from Australia and overseas, whereas the estimates of access are similar to a recent Australian estimate, but higher than estimates from overseas. The gaps in access are highest among those with the major types of chronic organ failure, particularly heart and respiratory. What are the implications for practitioners? The study demonstrates how routinely collected data at a regional level can be used to estimate need and access to palliative and end-of-life care, in the hospital and in the community. These methods of estimating need and unmet need can be used to inform the planning and development of services, as well as to monitor progress with implementation of changes in service provision.

Choice and preference are fundamental to person-centered care and supporting personal choice at the end of life should be a priority. This study analyzed the relationship between a person's preferred place of death and other individual variables that might influence their actual place of death by examining the activity of 2 specialist community palliative care services in Australia. This was a cross-sectional study of 2353 people who died between 01 August 2016-31 August 2018; 81% died in their preferred place. Sex, type of life-limiting illness, and length of time in care were the only variables significantly related to dying in one's preferred place. Women were more likely to die in their preferred place than men (84% v 78%) and people with a non-cancer diagnosis were 7% more likely to die in their preferred place than those with cancer, particularly when that place was their private residence (74% v 60%) or Residential Aged Care Facility (98% v 89%). Someone in care for 0-7 days had 4.2 times greater odds of dying in their preferred place (OR = 4.18, 2.20-7.94), and after 21 days in care, people had 4.6 greater odds of having a preference to die in a hospital (OR = 4.63, 3.58-5.99). Both community palliative care services have capacity and a model of care that is responsive to choice. These findings align with known referral patterns and disease trajectories and demonstrate that it is possible to support the majority of people in the care of community palliative care services to die in their preferred place.

Background: Malignant and non-malignant respiratory diseases account for >4.6 million deaths annually worldwide. Despite similar symptom burdens, serious inequities in access to palliative care persists for people with non-malignant respiratory diseases., Aim: To compare functional decline and symptom distress in advanced malignant and non-malignant lung diseases using consecutive, routinely collected, point-of-care national data., Setting/participants: The Australian national Palliative Care Outcomes Collaboration collects functional status (Australia-modified Karnofsky Performance Status (AKPS)) and symptom distress (patient-reported 0-10 numerical rating scale) in inpatient and community settings. Five years of data used Joinpoint and weighted scatterplot smoothing., Results: In lung cancers (89 904 observations; 18 586 patients) and non-malignant end-stage respiratory diseases (14 827 observations; 4279 patients), age at death was significantly lower in people with lung cancer (73 years; IQR 65-81) than non-malignant end-stage respiratory diseases (81 years; IQR 73-87 years; p<0.001). Four months before death, median AKPS was 40 in lung cancers and 30 in non-malignant end-stage respiratory diseases (p<0.001). Functional decline was similar in the two groups and accelerated in the last month of life. People with non-malignant diseases accessed palliative care later.Pain-related distress was greater with cancer and breathing-related distress with non-malignant disease. Breathing-related distress increased towards death in malignant, but decreased in non-malignant disease. Distress from fatigue and poor sleep were similar for both., Conclusions: In this large dataset unlike previous datasets, the pattern of functional decline was similar as was overall symptom burden. Timely access to palliative care should be based on needs not diagnoses., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: The literature describing the incidence of sleep difficulty in CNS cancers is very limited, with exploration of a sleep difficulty symptom trajectory particularly sparse in people with advanced disease. We aimed to establish the prevalence and longitudinal trajectory of sleep difficulty in populations with CNS cancers receiving palliative care nationally, and to identify clinically modifiable predictors of sleep difficulty., Methods: A consecutive cohort of 2406 patients with CNS cancers receiving palliative care from sites participating in the Australian national Palliative Care Outcomes Collaboration were evaluated longitudinally on patient-reported sleep difficulty from point-of-care data collection, comorbid symptoms, and clinician-rated problems. Multilevel models were used to analyze patient-reported sleep difficulty., Results: Reporting of mild to severe sleep difficulties ranged from 10% to 43%. Sleep scores fluctuated greatly over the course of palliative care. While improvement in patients' clinical status was associated with less sleep difficulty, the relationship was not clear when patients deteriorated. Worsening of sleep difficulty was associated with higher psychological distress ( P < .0001), greater breathing problems ( P < .05) and pain ( P < .05), and higher functional status ( P < .001) at the beginning of care., Conclusions: Sleep difficulty is prevalent but fluctuates widely in patients with CNS cancers receiving palliative care. A better-tailored sleep symptom assessment may be needed for this patient population. Early interventions targeting psychological distress, breathing symptoms, and pain for more functional patients should be explored to see whether it reduces sleep difficulties late in life., (© The Author(s) 2019. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Purpose: Every health care sector including hospice/palliative care needs to systematically improve services using patient-defined outcomes. Data from the national Australian Palliative Care Outcomes Collaboration aims to define whether hospice/palliative care patients' outcomes and the consistency of these outcomes have improved in the last 3 years., Methods: Data were analysed by clinical phase (stable, unstable, deteriorating, terminal). Patient-level data included the Symptom Assessment Scale and the Palliative Care Problem Severity Score. Nationally collected point-of-care data were anchored for the period July-December 2008 and subsequently compared to this baseline in six 6-month reporting cycles for all services that submitted data in every time period (n = 30) using individual longitudinal multi-level random coefficient models., Results: Data were analysed for 19,747 patients (46 % female; 85 % cancer; 27,928 episodes of care; 65,463 phases). There were significant improvements across all domains (symptom control, family care, psychological and spiritual care) except pain. Simultaneously, the interquartile ranges decreased, jointly indicating that better and more consistent patient outcomes were being achieved., Conclusion: These are the first national hospice/palliative care symptom control performance data to demonstrate improvements in clinical outcomes at a service level as a result of routine data collection and systematic feedback.