Successful employment outcomes are often beyond the reach of people with disabilities, but relatively little is known about the factors that best enable the achievement of this goal. Using survey data from 803 people with and without disabilities, we examine the association of eight factors with successful employment outcomes. Using regression tree analysis, five factors emerged as statistically significant predictors of successful employment outcomes for people with disabilities: corporate culture and climate, job characteristics, government support, employer attitudes, and societal attitudes. Key interrelationships between factors include: (1) government support linking with corporate culture and climate; and (2) job characteristics linking with corporate culture and climate. Findings are relevant to organisations and governments to inform policy and practice to improve employment outcomes for people with disabilities.
Abstract 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.
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.
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.
We were most interested to read the letter by Bull et al.1Bull J. Bonsignore L. Massie L. et al.Challenges in recruiting patients to a controlled feasibility study of a drug for opioid-induced constipation: lessons from the population with advanced cancer.J Pain Symptom Manage. 2019; 57: e5-e8Abstract Full Text Full Text PDF PubMed Scopus (3) Google Scholar As researchers, clinicians and academics in supportive and palliative care, the letter resonated with our own experiences when trying to recruit to studies exploring the problems of disordered bowel function in patients with advanced cancer. Although the authors of the published letter attribute this to the advanced cancer population, we would like to suggest an alternative opinion. In contrast, we submit that rather than this being an issue with the advanced illness stage of this patient cohort, the problems were related to the symptom they were investigating: constipation. There are two issues that support our contention that the problems were related to constipation symptoms rather than cohort in question. The first is the track record of the Australian national Palliative Care Clinical Studies Collaborative.2Shelby-James T.M. Hardy J. Agar M. et al.Designing and conducting randomized controlled trials in palliative care: a summary of discussions from the 2010 clinical research forum of the Australian Palliative Care Clinical Studies Collaborative.Palliat Med. 2012; 26: 1042-1047Crossref PubMed Scopus (28) Google Scholar This group based at the University of Technology Sydney (Australia) is multi-center palliative care research network with participating sites in each mainland state that conducts investigator-led clinical studies in palliative care. Established in 2006, Palliative Care Clinical Studies Collaborative is the first, largest, and most successful global palliative care trials group having successfully completed nine adequately powered Phase III controlled clinical trials, randomized more than 2000 participants; published more than 100 manuscripts; and secured $AU25M in competitive funding. This group has completed randomized control trials in difficult palliative care problems including pain,3Hardy J. Quinn S. Fazekas B. et al.Randomized, double-blind, placebo-controlled study to assess the efficacy and toxicity of subcutaneous ketamine in the management of cancer pain.J Clin Oncol. 2012; 30: 3611-3617Crossref PubMed Scopus (137) Google Scholar inoperable malignant bowel obstruction,4Currow D.C. Quinn S. Agar M. et al.Double-blind, placebo-controlled, randomized trial of octreotide in malignant bowel obstruction.J Pain Symptom Manage. 2015; 49: 814-821Abstract Full Text Full Text PDF PubMed Scopus (57) Google Scholar delirium at the end of life,5Agar M.R. Lawlor P.G. Quinn S. et al.Efficacy of oral risperidone, haloperidol, or placebo for symptoms of delirium among patients in palliative care: a randomized clinical trial.JAMA Intern Med. 2017; 177: 34-42Crossref PubMed Scopus (170) Google Scholar chronic breathlessness,6Abernethy A.P. McDonald C.F. Frith P.A. et al.Effect of palliative oxygen versus room air in relief of breathlessness in patients with refractory dyspnoea: a double-blind, randomised controlled trial.Lancet. 2010; 376: 784-793Abstract Full Text Full Text PDF PubMed Scopus (328) Google Scholar, 7Currow D.C. Ekstrom M. Louw S. et al.Sertraline in symptomatic chronic breathlessness: a double blind, randomised trial.Eur Respir J. 2019; 53Crossref Scopus (19) Google Scholar and nausea.8Hardy J. Skerman H. Glare P. et al.A randomized open-label study of guideline-driven antiemetic therapy versus single agent antiemetic therapy in patients with advanced cancer and nausea not related to anticancer treatment.BMC cancer. 2018; 18: 510Crossref PubMed Scopus (13) Google Scholar This group has demonstrated by recruitment that such trials are acceptable to frail patients, their families, and other health professionals. Furthermore, the group's track record summarized above confirms the feasibility of these trials. The second point is that the Collaborative has also tried to complete studies in constipation symptoms. When examining our own difficulties with recruiting, we turned to Australian national data with the aim of understanding at a population level the issues more clearly. To achieve this, we interrogated national data sets pertaining to specialist palliative care as entered into the Australian Palliative Care Outcomes Collaboration records. This resource contains point-of-care details for more than 85% of all people seen by specialist palliative care services nationally,9Currow D.C. Allingham S. Yates P. Johnson C. Clark K. Eagar K. Improving national hospice/palliative care service symptom outcomes systematically through point-of-care data collection, structured feedback and benchmarking.Support Care Cancer. 2015; 23: 307-315Crossref PubMed Scopus (65) Google Scholar of whom 80% have cancer as the reason for referral to palliative care. An analysis of consecutive referrals to participating palliative care services who had died between January 1, 2013 and December 31, 2015 was undertaken. There were 50,319 patients included on the basis that they had at least one measurement of distress (mean 3.27) from bowel symptoms on a 0–10 numerical rating scale in the last 55 days of life. According to national prescribing data in 2014, laxatives were the most commonly dispensed palliative care-related prescription10AnonSchedule of pharmaceutical benefits Canberra Australian Government.http://www.pbs.gov.au/publication/schedule/2015/04/2015-04-01-general-schedule.pdfDate: 2015Google Scholar suggesting that many of this group were likely to receiving laxatives and, by extrapolation, constipated. However, at the same time, distress from bowel symptom scores highlighted that most were less bothered by these issues than expected. There was, however, a small group (3.6%) who rated their distress as severe. These observations are consistent as an earlier interrogation of the Palliative Care Outcomes Collaboration data highlighting that at time of referral to palliative care, less than 5% were bothered by severe constipation symptoms.11Eagar K. Clapham S.P. Allingham S.F. Palliative care is effective: but hospital symptom outcomes superior.BMJ support. 2018; 31: 31Google Scholar To conclude, this letter's aim is not to minimize the fact that for some people, bowel symptoms are severe and distressing, and this group requires attention. The challenge is identifying the sub-group who is at most risk and start focusing our research attention to better understanding their unmet needs. This response was not externally funded. The authors declare no conflicts of interest. Authors' ResponseJournal of Pain and Symptom ManagementVol. 58Issue 3PreviewWe appreciate the response of Clark et al. to our article, Challenges in Recruiting Patients to a Controlled Feasibility Study of a Drug for Opioid-Induced Constipation: Lessons From the Population With Advanced Cancer (JPSM 2019;57(5):e5-e8), and their extensive experience from the Australian Palliative Care Outcomes Collaboration. Although we agree that distress from constipation may be limited to a small percentage of the cancer population and contribute to recruitment challenges, other factors we encountered included late referrals, rapid trajectory of disease, limited opioid use, and disinterest because of dealing with multiple issues during advanced illness. Full-Text PDF
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.
Using the results of Phase III studies in clinical practice depends on how representative study participants are of the clinical population to whom the results will be applied. The closer the characteristics between the subgroup who participate in a clinical trial and the whole population, the easier it is for clinicians to apply the results directly to the patient that he/she is treating. Trial participation is generally more happenstance than a systematic sampling of a population and is limited by eligibility criteria that do not reflect the entire clinical population.
63 Background: There are no agreed national nor international criteria for referral to palliative care. Key population characteristics have been defined to aid the generalizability of research findings in palliative care clinical studies. To codify differences in key demographic factors between patients with cancer participating in the Australian national Cancer Supportive Care Clinical Studies Collaborative (CSCCSC) phase III symptom control studies and the population referred to other Australian palliative care services. Methods: This study compares two contemporaneous consecutive cohorts generated through clinical trial participation and the national palliative care clinical quality improvement registry in Australia. Age, sex, cancer diagnosis, language, and socio-economic status were compared. Results: Cohorts were people with cancer: enrolled in CSCCSC phase III clinical studies (n=902; 17 sites); and registered by the Australian national Palliative Care Outcomes Collaboration (PCOC; n=75,240; 117 sites). Participants in CSCCSC studies were younger than those of PCOC (median 71 (IQR 62, 79) versus median 73 (IQR 63, 81); p=0.003 respectively). There was no significant difference in sex (p=0.483). Patients who spoke English accounted 95.0% of enrollees in the CSCCSC group and 92.2% in the PCOC group (p = 0.004). Clinical study participants had higher socioeconomic status that the PCOC group (p=0.022). Conclusions: Overall, the slightly different demographic patterns are reflective of the differences often seen between phase III trials and the populations to whom the results will be applied. Age differences particularly need to be taken into account when considering the best way to apply each study’s findings.
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.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.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.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.
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.
The variogram function is an important measure of the spatial dependencies of a geostatistical or other spatial dataset. It plays a central role in kriging, designing spatial studies, and in understanding the spatial properties of geological and environmental phenomena. It is therefore important to understand the variability attached to estimates of the variogram. Existing methods for constructing confidence intervals around the empirical variogram either rely on strong assumptions, such as normality or known variogram function, or are based on resampling blocks and subject to edge effect biases. This paper proposes two new procedures for addressing these concerns: a quasi-block-bootstrap and a quasi-block-jackknife. The new methods are based on transforming the data to decorrelate it based on a fitted variogram model, resampling blocks from the decorrelated data, and then recorrelating. The coverage properties of the new confidence intervals are compared by simulation to a number of existing resampling-based intervals. The proposed quasi-block-jackknife confidence interval is found to have the best properties of all of the methods considered across a range of scenarios, including normally and lognormally distributed data and misspecification of the variogram function used to decorrelate the data.