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The Australian Health Services Research Institute (AHSRI), University of Wollongong,was commissioned by the Commonwealth Department of Health (the Department) in August 2017 to undertake the ‘Resource Utilisation and Classification Study’(RUCS). This followedan earlier review of the Aged Care Funding Instrument (ACFI)1which concluded that ACFI did not reflect the care needs of residents nor did payments reflect the relative costs of providing care. The ACFI review recommended the development of a new casemix classification and funding assessment framework. The RUCS comprised four separate but closely related studies, each of which included separate data collection and analysis elements that have been synthesised to produce a classification and associated funding model, the Australian National Aged Care Classification (AN-ACC), for implementation across the Australian residential aged care sector.A brief outline of the RUCS is provided in Appendix 1. This is the second of a series of reports that present the results of the body of work completed as part of the overall RUCS program.This report (Report 2) describes the new assessment model developed to support the AN-ACC. It contains details of the AN-ACC Assessment Tool including its development using expert clinical panels, field-testing outcomes, and the recommended business rules regarding assessment, reassessmentprotocols and triggers. The report also describes the skills and competencies necessary for the AN-ACC assessment workforce.

Objective: This study explored the current activities of a sample of Australian private health insurance (PHI) funds to support the care of people living with chronic conditions, following changes to PHI legislation in 2007 permitting funds to cover a broader range of chronic disease management (CDM) services. Methods: A qualitative research design was used to gather perspectives from PHI sector representatives via semistructured interviews with eight participants. The interview data were analysed systematically using the framework analysis method. Results: Three main types of activities were most commonly identified: (1) healthcare navigation (2) structured disease management and health coaching programs and (3) care coordination services. These activities were primarily conducted via telephone by a combination of in-house and third-party health professionals. PHI funds seem to be taking a pragmatic approach to the type of CDM activities currently offered, guided by available data and identified member need. Activities are focused on people with diagnosed chronic conditions exiting hospital, rather than the broader population at-risk of developing a chronic condition. Conclusions: Despite legislation permitting PHI funds to pay benefits for CDM services being in place for more than 10 years, insurers are still in an early stage of implementation and evaluation of CDM activities. Primarily due to the regulated scope of PHI coverage in Australia, participants reported several challenges in providing CDM services, including identifying target groups, evaluating service outcomes and collaborating with other healthcare providers. The effectiveness of the approach of PHI funds to CDM in terms of the groups targeted and outcomes of services provided still needs to be established because evidence suggests that population-level interventions that target a larger number of people with lower levels of risks are likely to have greater benefit than targeting a small number of h

Objective: The aim of this study was to assess 15-Year trends in unplanned readmissions in an Australian regional health service. Methods: Drawing on data held in the Illawarra Health Information Platform (IHIP), this longitudinal retrospective study of adults admitted to hospital between 2001-02 and 2015-16 assessed rates of unplanned all-Cause readmissions within 30 days ('early') and 1-6 months ('late') following discharge. Rates were compared over time and between patient groups. Results: Age-Adjusted early readmission rates declined over the 15 years by an average of 1.3% per annum, whereas late readmission rates increased by an average of 0.6% per annum. Together, there was an overall decline in readmission rates. The entire decline in early readmission rates and a reversal of the increasing trend in late readmission rates occurred since 2010-11. Similar trends occurred across age groups, but were most pronounced among those aged ≥75 years. Conclusions: The decline in readmissions since 2010-11 suggests that the region has achieved improvements in discharge planning and in continuity between hospitals and community-Based care. These improvements have occurred across broad patient groups. The longitudinal and linked data held in the IHIP provides a unique opportunity to examine patterns of service utilisation at a regional level. What is known about the topic?: Published reports of longitudinal trends in readmissions are typically limited by short study periods and narrow criteria used to define study populations and readmissions. Australian longitudinal data suggest rates of early readmission have remained relatively unchanged in recent years, despite the focus on readmission rates as a metric to assess the quality and continuity of care. What does this paper add?: This unique longitudinal study reports on long-Term readmission trends over 15 years to hospitals within a single geographic area, with trends reported for both early (30-Day) and late (1-To 6-Month

Chronic or persistent pain is a growing global health problem. Effective management of pain emerging in childhood may prevent long-term health and vocational consequences. Internationally, paediatric pain services are a limited resource and, as such, must strive to improve equity, outcomes, and value for money. The Paediatric electronic Persistent Pain Outcomes Collaboration (PaedePPOC) is a binational paediatric outcome measurement centre that aims to measure, benchmark, and improve children's specialist pain services in Australasia. This study documents the establishment of PaedePPOC and presents baseline and initial outcome data. Binational consensus meetings determined the measures. Governance structures, collection protocols, information technology, site-specific logistics, and onsite training were achieved within 18 months. Children and parents complete baseline and progress questionnaires. Seven of 10 Australasian services provided data to PaedePPOC, with 1432 patients enrolled until June 2018. At baseline, patients were 12.4 ± (3.0) years, 68% female, 93% Australian-born, and 5% Aboriginal and/or Torres Strait Islander people. Most had moderate-severe functional disability and impaired quality of life, with pain affecting school attendance and employment. Opioid-containing medicines were used often or daily by 16%. Patients completing outcome measures at treatment end reported clinically significant improvement in pain intensity (49% of patients), functional ability (59%), and quality of life (69%). The PaedePPOC initiative has been successfully integrated into children's pain services, yielding timely point-of-care information to support clinicians and families, and valuable binational and service data to inform quality improvement and future sector planning.

Objectives Patients are presenting to emergency departments (EDs) with increasing complexity at rates beyond population growth and ageing. Intervention studies target patients with 12 months or less of frequent attendance. However, these interventions are not well targeted since most patients do not remain frequent attenders. This paper quantifies temporary and ongoing frequent attendance and contrasts risk factors for each group. Design Retrospective population-based study using 10 years of longitudinal data. Setting An Australian geographic region that includes metropolitan and rural EDs. Participants 332 100 residents visited any ED during the study period. Main outcome measure Frequent attendance was defined as seven or more visits to any ED in the region within a 12-month period. Temporary frequent attendance was defined as meeting this threshold only once, and ongoing more than once. Risk factors for temporary and ongoing frequent attenders were identified using logistic regression models for adults and children. Results Of 8577 frequent attenders, 80.1% were temporary and 19.9% ongoing (12.9% repeat, 7.1% persistent). Among adults, ongoing were more likely than temporary frequent attenders to be young to middle aged (aged 25-64 years), and less likely to be from a high socioeconomic area or be admitted. Ongoing frequent attenders had higher rates of non-injury presentations, in particular substance-related (OR=2.5, 99% CI 1.1 to 5.6) and psychiatric illness (OR=2.9, 99% CI 1.8 to 4.6). In comparison, children who were ongoing were more likely than temporary frequent attenders to be aged 5-15 years, and were not more likely to be admitted (OR=2.7, 99% CI 0.7 to 10.9). Conclusions Future intervention studies should distinguish between temporary and ongoing frequent attenders, develop specific interventions for each group and include rigorous evaluation.

Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families. Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services. Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE–2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire. Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81). While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as wel

Across the healthcare spectrum, patients and their families need evidence in order to make informed choices about their care needs. Palliative care is no exception, and Australia is in a unique position to provide such evidence. The aim of this national study was to compare the symptom outcomes of patients receiving hospital based palliative care to those receiving home based palliative care. The outcomes of 25,870 palliative of patients who died under the care of a hospital or home based palliative care service between January 2015 and December 2016 were included. Assessments using the Symptom Assessment Scale on admission and again just prior to death were analysed. The data demonstrate that those receiving palliative care in hospital have better pain and symptom outcomes than those receiving palliative care at home. Reasons for this difference are multi-factorial and must be considered in relation to the patient's right to choose their place of care, treatment preferences, family/carer supports at home and resources.

Objectives: To explore differences in severe symptom outcomes for palliative care patients receiving hospital care compared with those receiving care at home. Methods: Change in symptom distress from the start of an episode of palliative care to just prior to death was measured for 25 679 patients who died under the care of a hospital or home-based palliative care team between January 2015 and December 2016. Logistic regression models controlled for differences between hospital and home and enabled a comparison of the number of severe symptoms just prior to death. Results: All symptoms improved and over 85% of all patients had no severe symptoms prior to death. Pain control illustrates this with 7.4% of patients reporting severe pain distress at episode start and 2.5% just prior to death. When comparing all symptom outcomes by place of death, hospital patients are 3.7 times more likely than home patients to have no severe symptoms. Conclusion: Symptom outcomes are better for hospital patients. Patients at home have less improvement overall and some symptoms get worse. Reasons for the difference in outcomes by hospital and home are multifactorial and must be considered in relation to the patient's right to choose their place of care.

Objective To develop and examine a profile of the demographic, hospital admission and clinical characteristics of high users of hospital resources within a cohort of privately insured Australians.Methods Hospital admissions claims data from a group of private health insurance funds were analysed. The top 1% of hospital users were selected based on three measures of resource utilisation: number of admissions, total bed days and total insurance benefits paid. The demographic, hospital admission and clinical characteristics data were compared for these three measures of resource utilisation.Results Compared with the general insured population, the three high-use cohorts are older, have more public hospital admissions and have more same-day admissions. The three high-use cohorts have the same top five principal diagnosis categories. These five categories account for more than two-thirds of admissions. The top 1% of users is responsible for a large proportion of total resource utilisation, accounting for 13% of total costs and 21% of total bed days.Conclusions The highest users of hospital resources have a distinct profile, accounting for a large proportion of total resource utilisation for a narrow range of health conditions. The age and hospital admission profile of this group suggest both policy and service considerations for the targeting of interventions to support this high-needs group.What is known about this topic? Statistics are regularly published on the uptake and use of private health insurance in Australia but there is little detailed information on resource utilisation in specific subgroups, particularly those with the highest levels of hospitalisation.What does this paper add? This paper provides a profile of high resource utilisation among a privately insured cohort, describing demographic, hospital admission and clinical characteristics across three measures of resource utilisation. Patterns of use are detailed in this profile, for example the top 1% of

Introduction: Provision 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 analysis: Phase 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 dissemination: The 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 fo

Objective: To identify diagnostic groups and the form of the trajectory of functional decline that has the potential to enhance advance care planning (ACP) in a nursing home (NH) population. Methods: Retrospective, longitudinal study with dependent variable (function) derived from the Resident Classification Scale (RCS), 1997-2008. Trajectory modelling used linear and curvilinear terms. Results: The organ failure or other residents have a linear average functional decline. The organ failure residents had an average decline of 6.5 points per year and average function score at death of 68.6, CI [62.4, 74.8]. The cancer and frailty residents had significant curvilinear terms. The frailty residents had a slower rate of decline at 9.54 points per year and were most care dependent at death, with an average function score of 77.1, CI [73.8, 80.9] . Conclusion: Functional change is a measurable variable for a predictive tool to enhance ACP for NH residents based on their diagnosis.

Background: Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families. Objective: Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services. Method: Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire. Results: Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI 95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI 95% = 0.32, 0.98), and with family support (OR = 0.52; CI 95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI 95% = 0.97, 0.98) and carer payments (OR = 0.99; CI 95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI 95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI 95% = 0.45, 0.81). Significance of Results: While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in comm

The article by Kamal et al.,1 "Adherence to Measuring What Matters Measures Using Point-of-Care Data Collection Across Diverse Clinical Settings," is a valuable addition to the growing body of literature that details the importance of embedding objective measurements of quality into routine practice in hospice/palliative care. This is a significant paradigm shift given that, until quite recently, hospice/palliative care services have relied on process measures to evaluate their worth rather than patient-reported measures including people's actual clinical needs, outcomes, and experiences.

Context - In Australia, patients at the end of life with complex symptoms and needs are often referred to palliative care services (PCSs), but little is known about the symptoms of patients receiving palliative care in different settings. Objective - To explore patients’ levels of pain and other symptoms while receiving care from PCSs. Method - PCSs registered through Australia's national Palliative Care Outcomes Collaboration (PCOC) were invited to participate in a survey between 2008 and 2011. Patients (or if unable, a proxy) were invited to complete the Palliative Care Outcome Scale. Results - Questionnaires were completed for 1800 patients. One-quarter of participants reported severe pain, 20% reported severe ‘other symptoms’, 20% reported severe patient anxiety, 45% reported severe family anxiety, 66% experienced depressed feelings and 19% reported severe problems with self-worth. Participants receiving care in major cities reported higher levels of depressed feelings than participants in inner regional areas. Participants receiving care in community and combined service settings reported higher levels of need for information, more concerns about wasted time, and lower levels of family anxiety and depressed feelings when compared to inpatients. Participants in community settings had lower levels of concern about practical matters than inpatients. Conclusions - Patients receiving care from Australian PCSs have physical and psychosocial concerns that are often complex and rated as ‘severe’. Our findings highlight the importance of routine, comprehensive assessment of patients’ concerns and the need for Specialist Palliative Care clinicians to be vigilant in addressing pain and other symptoms in a timely, systematic and holistic manner, whatever the care setting.

Background The Palliative Care Problem Severity Score is a clinician-rated tool to assess problem severity in four palliative care domains (pain, other symptoms, psychological/spiritual, family/carer problems) using a 4-point categorical scale (absent, mild, moderate, severe). Aim To test the reliability and acceptability of the Palliative Care Problem Severity Score. Design: Multi-centre, cross-sectional study involving pairs of clinicians independently rating problem severity using the tool. Setting/participants Clinicians from 10 Australian palliative care services: 9 inpatient units and 1 mixed inpatient/community-based service. Results A total of 102 clinicians participated, with almost 600 paired assessments completed for each domain, involving 420 patients. A total of 91% of paired assessments were undertaken within 2 h. Strength of agreement for three of the four domains was moderate: pain (Kappa = 0.42, 95% confidence interval = 0.36 to 0.49); psychological/spiritual (Kappa = 0.48, 95% confidence interval = 0.42 to 0.54); family/carer (Kappa = 0.45, 95% confidence interval = 0.40 to 0.52). Strength of agreement for the remaining domain (other symptoms) was fair (Kappa = 0.38, 95% confidence interval = 0.32 to 0.45). Conclusion The Palliative Care Problem Severity Score is an acceptable measure, with moderate reliability across three domains. Variability in inter-rater reliability across sites and participant feedback indicate that ongoing education is required to ensure that clinicians understand the purpose of the tool and each of its domains. Raters familiar with the patient they were assessing found it easier to assign problem severity, but this did not improve inter-rater reliability.

Objective. Chronic pain is experienced by one in five Australians and is estimated to be the nation's third most costly health problem. In 2013, a chronic pain treatment outcomes registry was established, with the goals of evaluating treatment of chronic pain in multidisciplinary centers, establishing a benchmarking system to drive quality improvement and providing answers to important questions regarding types of treatment ("dose," intensity, and response) and which treatment is appropriate for different patients. This paper describes the development and the first-phase implementation of the registry. Methods. A minimum data set of primarily patient-rated measures was developed for use within pain management services. Governance structures and protocols for data collection were established, and software and resources created, to support pain management services. Results. Data collection commenced in 21 centers in Australia and is being implemented in over 20 others across Australia and New Zealand within the first two years. Feedback in the initial phase has already resulted in improvements to the software and reports, as well as minor changes to the data set. Centers have submitted high-quality data describing the demographic and clinical characteristics of patients referred to specialist pain services. Conclusions. The electronic Persistent Pain Outcomes Collaboration has been established for Australasia and is strongly supported by specialist societies and consumer groups. The next phase will increase the proportion of follow-up data in order to realize the registry's goals of evaluation, benchmarking, and research to improve outcomes and services for patients experiencing persistent pain.

Objective: The aim of this work was to analyze routine assessments recorded, when a patient was documented as likely to die in hours to days, to determine the prevalence, intensity, and associations of physical symptoms. Background: Although death inevitably occurs, very little prospective data describe at population level the physical symptoms confronting imminently dying people. Methods: Using prospectively collected data from participating palliative care services in the Australian Palliative Care Outcomes Collaboration between July 1, 2013, and December 31, 2014, factors associated with worse symptom experiences were explored using logistic regression modeling. Results: The experiences of 18,975 patients who died after being identified as imminently terminal were analyzed, with 75% (n = 14,238) of these being cancer deaths. Seventy percent (n = 13,051) occurred in a palliative care unit, 8.7% (n = 1657) in an acute hospital with palliative care support, and 22.5% (n = 4266) at home. More than half were assessed as experiencing acceptable symptom control especially those with nonmalignant disease. The notable exception was breathing problems, where compared to cancer patients, those with nonmalignant disease were 34% more likely to experience distressing breathlessness (odds ratio 1.34; 95% confidence interval 1.23–147). Regardless of the cause, deaths in a community setting were more likely to be complicated by more severe symptoms with the exception of breathlessness, where those dying in acute hospitals were most likely to be assessed as requiring further help. Discussion: The terminal phase is perceived as a time where the majority will experience distressing symptoms, but this work suggests a contrary view. However, there did seem to be a detrimental effect depending on place of care with more significant problems recorded when people were dying at home. More work is needed to clarify this given the current push for more home deaths.

Background: The Palliative Care Problem Severity Score is a clinician-rated tool to assess problem severity in four palliative care domains (pain, other symptoms, psychological/spiritual, family/carer problems) using a 4-point categorical scale (absent, mild, moderate, severe). Aim: To test the reliability and acceptability of the Palliative Care Problem Severity Score. Design: Multi-centre, cross-sectional study involving pairs of clinicians independently rating problem severity using the tool. Setting/participants: Clinicians from 10 Australian palliative care services: 9 inpatient units and 1 mixed inpatient/community-based service. Results: A total of 102 clinicians participated, with almost 600 paired assessments completed for each domain, involving 420 patients. A total of 91% of paired assessments were undertaken within 2 h. Strength of agreement for three of the four domains was moderate: pain (Kappa = 0.42, 95% confidence interval = 0.36 to 0.49); psychological/spiritual (Kappa = 0.48, 95% confidence interval = 0.42 to 0.54); family/carer (Kappa = 0.45, 95% confidence interval = 0.40 to 0.52). Strength of agreement for the remaining domain (other symptoms) was fair (Kappa = 0.38, 95% confidence interval = 0.32 to 0.45). Conclusion: The Palliative Care Problem Severity Score is an acceptable measure, with moderate reliability across three domains. Variability in inter-rater reliability across sites and participant feedback indicate that ongoing education is required to ensure that clinicians understand the purpose of the tool and each of its domains. Raters familiar with the patient they were assessing found it easier to assign problem severity, but this did not improve inter-rater reliability.

The Palliative Care Outcomes Collaboration (PCOC) aims to improve patient outcomes through:  routine clinical outcome measurement  periodic surveys and  benchmarking.

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.

The Centre for Health Service Development (CHSD), University of Wollongong was commissioned by the Independent Hospital Pricing Authority (IHPA) to develop Version 4 of the Australian National Subacute and Non‐acute Patient (AN‐SNAP) classification. This report outlines the objectives, approach and results of the study.

ePPOC is a program which aims to improve services and outcomes for people experiencing chronic pain. It involves specialist pain services collecting a standard set of information to measure outcomes for their patients as a result of treatment. Deidentified information is sent to ePPOC for analysis, and results are fed back to participating services every six months. The information collected by services will also be used to develop a national benchmarking system to set goals and identify best practice within the sector, and will allow a coordinated approach to research into the management of chronic pain in Australasia. ePPOC is an initiative of the Faculty of Pain Medicine, supported by the Australian Pain Society, PainAustralia and the wider pain sector. It was launched in 2013 with a small number of pain management services trialling the measures and processes, and is being progressively rolled out to other services throughout Australia and New Zealand.

Introduction: Pain management services currently collect a wealth of information about their patients, however this information often varies across services making it difficult to compare outcomes and identify best practice.

Context In Australia, patients at the end of life with complex symptoms and needs are often referred to palliative care services (PCSs), but little is known about the symptoms of patients receiving palliative care in different settings. Objective To explore patients' levels of pain and other symptoms while receiving care from PCSs. Method PCSs registered through Australia's national Palliative Care Outcomes Collaboration (PCOC) were invited to participate in a survey between 2008 and 2011. Patients (or if unable, a proxy) were invited to complete the Palliative Care Outcome Scale. Results Questionnaires were completed for 1800 patients. One-quarter of participants reported severe pain, 20% reported severe 'other symptoms', 20% reported severe patient anxiety, 45% reported severe family anxiety, 66% experienced depressed feelings and 19% reported severe problems with self-worth. Participants receiving care in major cities reported higher levels of depressed feelings than participants in inner regional areas. Participants receiving care in community and combined service settings reported higher levels of need for information, more concerns about wasted time, and lower levels of family anxiety and depressed feelings when compared to inpatients. Participants in community settings had lower levels of concern about practical matters than inpatients. Conclusions Patients receiving care from Australian PCSs have physical and psychosocial concerns that are often complex and rated as 'severe'. Our findings highlight the importance of routine, comprehensive assessment of patients' concerns and the need for Specialist Palliative Care clinicians to be vigilant in addressing pain and other symptoms in a timely, systematic and holistic manner, whatever the care setting.

Objective To describe and compare outcomes from in-patient rehabilitation (IPR) in working-aged adults across different groups of long-term neurological conditions, as defined by the UK National Service Framework. Design Analysis of a large Australian prospectively collected dataset for completed IPR episodes (n = 28,596) from 2003-2012. Methods De-identified data for adults (16–65 years) with specified neurological impairment codes were extracted, cleaned and divided into ‘Sudden-onset’ conditions: (Stroke (n = 12527), brain injury (n = 7565), spinal cord injury (SCI) (n = 3753), Guillain-Barré syndrome (GBS) (n = 805)) and ‘Progressive/stable’ conditions (Progressive (n = 3750) and Cerebral palsy (n = 196)). Key outcomes included Functional Independence Measure (FIM) scores, length of stay (LOS), and discharge destination. Results Mean LOS ranged from 21–57 days with significant group differences in gender, source of admission and discharge destination. All six groups showed significant change (p<0.001) between admission and discharge that was likely to be clinically important across a range of items. Significant between-group differences were observed for FIM Motor and Cognitive change scores (Kruskal-Wallis p<0.001), and item-by-item analysis confirmed distinct patterns for each of the six groups. SCI and GBS patients were generally at the ceiling of the cognitive subscale. The ‘Progressive/stable’ conditions made smaller improvements in FIM score than the ‘Sudden-onset conditions’, but also had shorter LOS. Conclusion All groups made gains in independence during admission, although pattern of change varied between conditions, and ceiling effects were observed in the FIM-cognitive subscale. Relative cost-efficiency between groups can only be indirectly inferred. Limitations of the current dataset are discussed, together with opportunities for expansion and further development.

The Palliative Care Outcomes Collaboration (PCOC), Australia, and the Outcome Assessment and Complexity Collaborative (OACC), UK, are initiatives that support the routine use of outcome measures in specialist palliative care. Both initiatives follow a sophisticated implementation approach, facilitating routine clinical assessment tools that can be used to measure and benchmark patient outcomes. Both projects also provide feedback to participating services and encourage the use of outcomes data for service development.