ABSTRACT The increasing demand for pain management and limited resources available highlight the need to measure treatment effectiveness. We analysed data collected at 75 specialist persistent pain services located in Australia and New Zealand to calculate the overall treatment outcome for patients receiving care during 2014 to 2020. Sociodemographic and clinical information was provided for 23,915 patients, along with patient-reported measures assessing pain, pain interference, depression, anxiety, stress, pain catastrophizing, and pain self-efficacy. Latent class analysis identified 4 distinct outcomes based on patients' pattern of responses across the assessment tools at treatment end. Group 1 (n = 8369, 35%) reported low/mild severity across all clinical domains at the end of care, while group 4 (n= 7081, 30%) were more likely to report moderate/high severity on all domains. Group 2 (n = 1991, 8%) reported low/mild pain with moderate/high psychological distress at treatment end, and group 3 (n = 6474, 27%) reported moderate/high pain with low/mild psychological distress. Multivariable logistic regression identified those factors associated with the different groups. In particular, factors most predictive of a poor (group 4) vs good outcome (group 1) were unemployment (due to pain or other reasons), requiring an interpreter, widespread pain, pain of longer duration, and attributing the pain to an injury at work. The results may allow identification of those most likely to benefit from the services currently provided and inform development of alternative or enhanced services for those at risk of a poor outcome.

Background Very few measures are used successfully as part of routine care within national palliative care outcome programs. Only a handful of studies examine these measures. The aim of this study is to evaluate the validity of a measure used in a national outcomes program: the Palliative Care Outcomes Collaboration Symptom Assessment Scale (PCOC SAS). Methods A retrospective multi-site cohort study with secondary analysis of routinely collected patient-level data to assess PCOC SAS’s internal consistency, construct validity, reliability, interpretability, acceptability and sensitivity. The analyses used two sets, with data collected by inpatient and community palliative care services registered with the Australian national PCOC. Results Dataset one included 1,117 patients receiving palliative care from 21 services. Dataset two included 5,294 patients receiving palliative care from 119 PCOC services. PCOC SAS demonstrated the ability to detect and discriminate distress by palliative care phase, functional status and diagnosis. Excellent and good convergent and discriminant validity were demonstrated. Fair through to substantial inter-rater and intra-rater reliability levels were evidenced. Sufficient interpretability resulted along with necessary levels of acceptability and sensitivity. Conclusion PCOC SAS is a valid and reliable patient-reported outcome measure suitable for use in routine clinical care with patients requiring palliative and or end-of-life care, including in national outcomes programs.

Practitioners who prescribe opioid medications for people with chronic non-cancer pain must navigate increasingly stringent policy requirements,1 research findings questioning the benefit of opioids for such patients,2 and patients who fear uncontrolled pain if opioids are withdrawn.3 In Australia and New Zealand, people with chronic non-cancer pain may be referred to specialist pain management services, most of which participate in the electronic Persistent Pain Outcomes Collaboration (ePPOC; https://www.uow.edu.au/ahsri/eppoc), an initiative for collecting standardised information about their patients, the services they provide, and the outcomes of treatment. This information is used at point of care, and for reporting, benchmarking, and research. To explore the impact of changes in opioid use on outcomes for patients, we analysed ePPOC data collected at 67 pain services (online Supporting Information) during January 2015 – June 2020. We extracted data for all patients with completed episodes of care and who had answered questions about opioid use at referral and episode end. We summarised their characteristics and outcomes as means with standard deviations (SDs). All analyses were conducted in SAS 9.4. Our study was approved by the University of Wollongong and Illawarra and Shoalhaven Local Health District health and medical human research ethics committee; reference, 2019/ETH03804). The mean age of the 10 302 patients who provided information at both referral and at the end of their treatment episodes was 49.5 years (SD, 14.4 years); 5807 were women (56.4%), and 3490 had experienced their pain for more than five years (33.9%). The most frequent site of their main pain was the back (3936 patients; 38.2%). A total of 6340 patients (61.5%) were using opioid medications at referral (Box 1); their mean oral morphine equivalent daily dose4 was 56.3 mg (SD, 75.3 mg), the median daily dose was 31.0 mg (interquartile range [IQR], 15–75 mg). They reported higher mean pain scores than patients not using opioids at referral (6.2 [SD, 1.6] v 5.8 [SD, 1.7]) and greater interference in daily activities (7.2 [SD, 1.8] v 6.5 [SD, 2.0]; each measured with the Brief Pain Inventory5). Mean values for depression, anxiety, stress, pain catastrophising, and pain self-efficacy were also worse for people using opioid medications (data not shown). * Opioid therapy was initiated for 536 of patients who had not being using opioid medications at referral (13.5%). † Opioid use had been reduced by less than 50% for 1025 patients (30.3%), not changed for 878 patients (26.0%), and increased for 1479 patients (43.7%). The most frequent service events were individual appointments with medical and allied health staff (35 678 of 55 012 events, 65%) and group pain programs (18 841 events, 34%); there were 493 procedural interventions (1%). The median episode length was 175 days (IQR, 99–322 days). Opioid prescribing varies between pain services, including direct prescribing by the pain specialist and recommendations to patients’ general practitioners. However, a major focus of multidisciplinary care is supporting patients to reduce their opioid use, which typically involves collaboration between the patient, their GP, and the pain service. By the end of their treatment episodes, 1724 patients who reported using opioids at referral (27.2%) had stopped doing so, 1234 patients (19.5%) had reduced their dose by at least 50% and 3382 patients (53.3%) had either not changed, increased, or reduced opioid use by less than 50%. For each group, scores had improved in each clinical domain, and the changes were greatest for patients who had ceased opioid use, as were the proportions experiencing clinically significant improvement. Scores for measures specifically related to pain experience (pain severity, interference, catastrophising and self-efficacy) at the end of treatment were similar to or better than those of patients who had not been using opioids at referral, despite greater initial pain severity. Conversely, the smallest mean improvements were for the patients who had not reduced opioid use by at least 50% (Box 2). Although our study was limited by its retrospective nature, the lack of follow-up of patients who did not complete treatment, and its restriction to specialist pain practices, our findings are encouraging. We found that significant clinical improvements are possible for people with chronic non-cancer pain attending multidisciplinary pain management services in Australia and New Zealand, even as they discontinue opioid medications. The challenge is to extend these services and supported self-management skills to primary and community care. We thank the staff at the participating pain management services for collecting and collating the data we analysed. The electronic Persistent Pain Outcomes Collaboration (ePPOC) is funded by the participating services, NSW Health, the Victorian Department of Health and Human Services, the Victorian Transport Accident Commission, Worksafe Victoria, the Australian Department of Veterans’ Affairs, and the Accident Compensation Corporation (New Zealand). Hilarie Tardif and Samuel Allingham are employed by ePPOC. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.

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.

Context. Fatigue is the most commonly reported symptom in life-limiting illnesses, although not much is known about the distress it causes patients as they approach death. Objectives. To map the trajectory of distress from fatigue reported by an Australian palliative care population in the last 60 days leading up to death. Methods. A prospective, longitudinal, consecutive cohort study using national data from the Australian Palliative Care Outcomes Collaboration between July 1, 2013, and December 31, 2018. Patients were included if they had at least one measurement of fatigue on a 0-10 numerical rating scale in the 60 days before death. Descriptive statistics were used to analyse patients by diagnostic cohort and functional status. Results. A total of 116,604 patients from 203 specialist palliative care services were analyzed, providing 501,104 data points. Distress from fatigue affected up to 80% of patients referred to palliative care, with the majority experiencing moderate or severe distress. Malignant and nonmalignant diagnoses were equally affected, with the neurological cohort showing the greatest variability. The degree of distress correlated with a patient's functional level; it worsened as a patient's function declined until a patient became bedbound when the reporting of distress reduced. Conclusions. Distress from fatigue is high in this cohort of patients. Interventions to reduce this distress need to be a research priority. (C) 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Background: Understanding current patterns of functional decline will inform patient care and has health service and resource implications. Aim: This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis. Design: Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale. Segmented regression was used to identify time points prior to death associated with significant changes in the slope of functional decline for each diagnostic cohort. Sensitivity analyses explored the impact of severe symptoms and late referrals, age and sex. Setting/participants: In all, 115 specialist palliative care services submit prospectively collected patient data to the national Palliative Care Outcomes Collaboration across Australia. Data on 55,954 patients who died in the care of these services between 1 January 2013 and 31 December 2015 were included. Results: Two simplified functional decline trajectories were identified in the last 4 months of life. Trajectory 1 has an almost uniform slow decline until the last 14 days of life when function declines more rapidly. Trajectory 2 has a flatter more stable trajectory with greater functional impairment at 120 days before death, followed by a more rapid decline in the last 2 weeks of life. The most rapid rate of decline occurs in the last 2 weeks of life for all cohorts. Conclusions: Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.

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.

The Supportive and Palliative Care Unit (SPCU), Eastern Health is the largest in-patient palliative care unit in Victoria, with 32 beds and a diverse interdisciplinary team.

ABSTRACT 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 [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). 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 community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.

Context. Breathlessness is a major cause of suffering and distress, and little is known about the trajectory of breathlessness near death.Objectives. To determine the trajectory and clinical-demographic factors associated with breathlessness in the last week of life in patients receiving specialist palliative care.Methods. This was a prospective, longitudinal cohort study using national data on specialist palliative care from the Australian Palliative Care Outcomes Collaboration. We included patients in the Australian Palliative Care Outcomes Collaboration who died between July 1, 2013 and June 30, 2014 with at least one measurement of breathlessness on a 0-10 numerical rating scale in the week before death. The trajectory and factors associated with breathlessness were analyzed using multivariate random-effects linear regression.Results. A total 12,778 patients from 87 services (33,404 data points) were analyzed. The average observed breathlessness was 2.1 points and remained constant over time. Thirty-five percent reported moderate to severe distress (numerical rating scale >= 4) at some time in their last week. Factors associated with higher breathlessness were younger age, male gender, cardiopulmonary involvement, concurrent fatigue, nausea, pain, sleeping problems, higher Australia-modified Karnofsky Performance Status, and clinical instability in the multivariate analysis. Respiratory failure showed the largest association (mean adjusted difference 3.1 points; 95% confidence interval, 2.8-3.4).Conclusion. Although breathlessness has been reported to worsen in the last months, the mean severity remained stable in the final week of life. In specialized palliative care, one in three people experienced significant breathlessness especially in respiratory disease. (C) 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.