Patterns of patient outcomes following specialist pain management in Australasia: a latent class analysis using the electronic Persistent Pain Outcomes Collaboration database.

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.

Patient-reported outcome measurement of symptom distress is feasible in most clinical scenarios in palliative care: an observational study involving routinely collected data.

BACKGROUND: Implementation of routinely collected patient-reported outcome measures (PROMs) ensures patients' priorities are at the forefront of care planning and helps to standardize approaches to quality improvement. In palliative care, barriers to PROMs are widely known but what are not understood are the clinical and care settings in which patients are more likely to report and when proxy reporting is needed. OBJECTIVE: To examine the incidence of patient-reported symptom distress compared to the incidence of proxy reporting in palliative care and influencing factors. METHODS: A national observational study using routinely collected PROMs data with influencing factors investigated by logistic regression modelling. Participants were patients with an advanced life-limiting illness receiving palliative care in an inpatient or a community healthcare setting in Australia. RESULTS: Sixteen thousand one hundred and fifty-eight reports of symptom distress were collected from 1117 patients seen by 21 palliative care services. The majority of respondents were diagnosed with cancer (76%), were older (≥65 years, 72%) and had nominated English as their first language (88%). The majority of symptom distress reports were completed by patients (61%). The odds of a patient providing a self-report where grater when they were receiving community versus inpatient palliative care (odds ratio (OR): 3.0; 95% confidence interval (CI): 2.25-4.01), for patients diagnosed with malignant versus non-malignant disease (OR 1.7; 95% CI: 1.26-2.31), and for those who required an urgent change in their care plan versus those whose symptoms and problems were adequately managed (OR: 1.38; 95% CI: 1.04-1.83). CONCLUSION: Three factors are associated with an increased likelihood of patient versus proxy reporting in palliative care: healthcare setting, diagnosis, and the acuity and urgency of the patient's clinical needs. PROMs are feasible in most clinical scenarios in palliative care, including when an urgent clinical response is required.

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.

The Level of Distress From Fatigue Reported in the Final Two Months of Life by a Palliative Care Population: An Australian National Prospective, Consecutive Case Series.

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.

The trajectory of functional decline over the last 4 months of life in a palliative care population: A prospective, consecutive cohort study.

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.

Perceptions of the care received from Australian palliative care services: A caregiver perspective.

ABSTRACTBackground: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.

Breathlessness During the Last Week of Life in Palliative Care: An Australian Prospective, Longitudinal Study.

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.