ORCID Profile
0000-0002-6756-6119
Current Organisations
Royal Australasian College of Physicians
,
South Western Sydney Local Health District
,
University of Adelaide
,
University of New South Wales South Western Sydney Clinical School
,
University of Technology Sydney
,
Flinders University
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Publisher: Elsevier BV
Date: 02-2013
DOI: 10.1016/J.JPAINSYMMAN.2012.02.017
Abstract: Systematic reviews and meta-analyses suggest that community specialist palliative care services (SPCSs) can avoid hospitalizations and enable home deaths. But more information is needed regarding the relative efficacies of different models. Family caregivers highlight home nursing as the most important service, but it is also likely the most costly. To establish whether community SPCSs offering home nursing increase rates of home death compared with other models. We searched MEDLINE, AMED, Embase, CINAHL, the Cochrane Database of Systematic Reviews, and CENTRAL on March 2 and 3, 2011. To be eligible, articles had to be published in English-language peer-reviewed journals and report original research comparing the effect on home deaths of SPCSs providing home nursing vs. any alternative. Study quality was independently rated using Cochrane grades. Maximum likelihood estimation of heterogeneity was used to establish the method for meta-analysis (fixed or random effects). Potential biases were assessed. Of 1492 articles screened, 10 articles were found eligible, reporting nine studies that yielded data for 10 comparisons. Study quality was high in two cases, moderate in three and low in four. Meta-analysis indicated a significant effect for SPCSs with home nursing (odds ratio 4.45, 95% CI 3.24-6.11 P<0.001). However, the high-quality studies found no effect (odds ratio 1.40, 95% CI 0.97-2.02 P=0.071). Bias was minimal. A meta-analysis found evidence to be inconclusive that community SPCSs that offer home nursing increase home deaths without compromising symptoms or increasing costs. But a compelling trend warrants further confirmatory studies. Future trials should compare the relative efficacy of different models and intensities of SPCSs.
Publisher: Elsevier BV
Date: 2021
Publisher: Elsevier BV
Date: 09-2021
Publisher: Wiley
Date: 03-2015
DOI: 10.1111/IMJ.12677
Publisher: European Respiratory Society
Date: 2016
Publisher: Springer Science and Business Media LLC
Date: 31-10-2020
DOI: 10.1186/S12885-020-07549-Y
Abstract: This analysis aims to evaluate health-related quality of life (HrQoL) (primary outcome for this analysis), nausea and vomiting, and pain in patients with inoperable malignant bowel obstruction (IMBO) due to cancer or its treatments randomised to standardised therapies plus octreotide or placebo over a maximum of 72 h in a double-blind clinical trial. Adults with IMBO and vomiting recruited through 12 services spanning inpatient, consultative and community settings in Australia were randomised to subcutaneous octreotide infusion or saline. HrQoL was measured at baseline and treatment cessation (EORTC QLQ-C15-PAL). Mean within-group paired differences between baseline and post-treatment scores were analysed using Wilcoxon Signed Rank test and between group differences estimated using linear mixed models, adjusted for baseline score, sex, age, time, and study arm. One hundred six of the 112 randomised participants were included in the analysis ( n = 52 octreotide, n = 54 placebo) 6 participants were excluded due to major protocol violations. Mean baseline HrQoL scores were low (octreotide 22.1, 95% CI 14.3, 29.9 placebo 31.5, 95% CI 22.3, 40.7). There was no statistically significant within-group improvement in the mean HrQoL scores in the octreotide ( p = 0.21) or placebo groups ( p = 0.78), although both groups reported reductions in mean nausea and vomiting (octreotide p 0.01 placebo p = 0.02) and pain scores (octreotide p 0.01 placebo p = 0.03). Although no statistically significant difference in changes in HrQoL scores between octreotide and placebo were seen, an adequately powered study is required to fully assess any differences in HrQoL scores. The HrQoL of patients with IMBO and vomiting is poor. Further research to formally evaluate the effects of standard therapies for IMBO is therefore warranted. Australian New Zealand Clinical Trials Registry ACTRN12608000211369 (date registered 18/04/2008)
Publisher: American Medical Association (AMA)
Date: 07-2017
Publisher: Elsevier BV
Date: 09-2011
Publisher: SAGE Publications
Date: 10-11-2021
Abstract: This study aimed to describe Australian long-term care (LTC) personnel’s knowledge and attitudes concerning palliative care for residents with advanced dementia, and explore relationships with LTC facility ersonnel characteristics. An analysis was undertaken of baseline data from a cluster randomised controlled trial of facilitated family case conferencing for improving palliative care of LTC residents with advanced dementia (the ‘IDEAL Study’). Participants included any LTC personnel directly involved in residents’ care. Knowledge and attitudes concerning palliative care for people with advanced dementia were measured using the questionnaire on Palliative Care for Advanced Dementia. Univariate and multivariate analyses explored relationships between personnel knowledge/attitudes and facility ersonnel characteristics. Of 307 personnel in the IDEAL Study, 290 (94.5%) from 19/20 LTCFs provided sufficient data for inclusion. Participants included 9 (2.8%) nurse managers, 59 (20.5%) registered nurses, 25 (8.7%) enrolled nurses, 187 (64.9%) assistants in nursing ersonal care assistants and 9 (3.1%) care service employees. In multivariate analyses, a facility policy not to rotate personnel through dementia units was the only variable associated with more favourable overall personnel knowledge and attitudes. Other variables associated with favourable knowledge were a designation of nursing manager or registered or enrolled nurse, and having a preferred language of English. Other variables associated with favourable attitudes were tertiary level of education and greater experience in dementia care. Like previous international research, this study found Australian LTC personnel knowledge and attitudes regarding palliative care for people with advanced dementia to be associated with both facility and personnel characteristics. Future longitudinal research is needed to better understand the relationships between knowledge and attitudes, as well as between these attributes and quality of care.
Publisher: Elsevier BV
Date: 10-2023
Publisher: Springer Science and Business Media LLC
Date: 21-08-2016
DOI: 10.1007/S00520-015-2897-0
Abstract: In brain tumours, brain metastases or advanced cancer treatment with corticosteroids, side effects can add to symptoms. These are best assessed by patients, complementing clinical assessment. We assessed the feasibility and validity of the Dexamethasone Symptom Questionnaire-Chronic (DSQ-Chronic), patient and caregiver versions. A longitudinal cohort study was conducted, collecting clinician-rated toxicity, performance status, dexamethasone dose and DSQ-Chronic (patient and caregiver versions) at baseline, then 2, 4 and 8 weeks later. Patients had a primary malignant brain tumour, brain metastases, or advanced cancer Karnofsky Performance Status ≥40 and predicted survival ≥8 weeks. Analysis included questionnaire completion rates, frequency and severity of dexamethasone-attributable side effects, agreement between patient and caregiver ratings, comparison with clinician-rated toxicity and correlation with performance status. Sixty-six patients were recruited (mean age 60 years), with their caregivers. Completion of questionnaires was over 90% for the dyad at baseline but dropped over time, with caregiver completion rates higher at all timepoints. Agreement between patients and proxies was fair to moderate, and while proxies systematically overestimated symptom severity on DSQ-chronic total scores, the bias was less than 10 points. Patient and clinician agreement was higher for more objective symptoms. The DSQ-Chronic is feasible when the patient is relatively well. As capacity to complete the DSQ-Chronic diminishes, caregivers can be proxy-raters. Clinicians capture corticosteroid toxicities, which may not be obvious to the patient. The DSQ-Chronic, patient and caregiver versions, are useful tools to be used with clinician assessment.
Publisher: Oxford University Press (OUP)
Date: 24-06-2023
DOI: 10.1093/NOP/NPAD035
Abstract: People living with high-grade glioma (HGG) have erse and complex needs. Screening aims to detect patients with some level of unmet need requiring triaging and further assessment. However, most existing measures of unmet need are not suitable for screening in this population due to their length. We aimed to explore the clinical utility of a brief screening tool (SCNS-ST9) in people with HGG in detecting unmet needs. Secondary analysis of data collected in a prospective cohort study of 116 people with HGG who completed the Supportive Care Needs Survey (SCNS-SF34) and a brain cancer-specific needs survey (BrTSCNS) during chemoradiation (T1) and 6 months later (T2). The SCNS-ST9 contains a subset of 9 items from the SCNS-SF34. Data analysis determined the number of in iduals with unmet needs on the SCNS-SF34 and the BrTSCNS, not identified as having some level of need by the SCNS-ST9. Overall, 3 in iduals (T1: 2.6% [3/116] T2: 4.8% [3/63]) at each time point reported other unmet needs on the SCNS-SF34 that were missed by the SCNS-ST9. Domain-specific screening items missed a higher proportion of in iduals (3.2%–26%), particularly in the psychological and health systems domains. Only 1 in idual with brain cancer-specific needs was missed by SCNS-ST9 overall. Findings demonstrate the sensitivity and clinical utility of a brief screening tool (SCNS-ST9) of unmet needs in people with HGG. Routine use of this screening tool, supported by clinical pathways, may improve access to support services, potentially reducing the burden of disease for these patients.
Publisher: Wiley
Date: 30-07-2018
DOI: 10.1002/GPS.4759
Abstract: Prescribing of antipsychotic medications for patients with delirium remains controversial. Concerns exist that these vulnerable and frail patients may be prescribed antipsychotics inappropriately as a substitute for non-pharmacological approaches when identifiable causes are not found or they challenge ward processes. Moreover, recent evidence suggests that antipsychotics may cause more harm than good in the palliative care patient group with delirium. On the other hand, guidelines in the United Kingdom and the Netherlands support prescribing of antipsychotics in certain circumstances, and a large European survey has revealed that antipsychotics tend to be prescribed first line for hyperactive delirium. Never before, therefore, is there a greater need to examine whether indeed these medications are clinically useful for the treatment of delirium. With this in mind, evidence-based arguments for and against prescribing antipsychotics for the treatment of delirium are presented in this debate article. The paper concludes with a moderation piece to help guide clinical practice.
Publisher: BMJ
Date: 10-2021
DOI: 10.1136/BMJOPEN-2021-050765
Abstract: Delirium is one of the most common conditions diagnosed in hospitalised older people and is associated with numerous adverse outcomes, yet there are no proven pharmacological treatments. Recent research has identified cerebral glucose hypometabolism as a pathophysiological mechanism offering a therapeutic target in delirium. Insulin, delivered via the intranasal route, acts directly on the central nervous system and has been shown to enhance cerebral metabolism and improve cognition in patients with mild cognitive impairment and dementia. This trial will determine whether intranasal insulin can reduce the duration of delirium in older hospitalised patients. This is a prospective randomised, placebo-controlled, double-blind study with 6 months follow-up. One hundred patients aged 65 years or older presenting to hospital with delirium admitted under geriatric medicine will be recruited. Participants will be randomised to intranasal insulin detemir or placebo administered twice daily until delirium resolves, defined as Confusion Assessment Method (CAM) negative for 2 days, or discharge from hospital. The primary outcome measure will be duration of delirium using the CAM. Secondary outcome measures will include length of hospital stay, severity of delirium, adherence to treatment, hospital complications, new admission to nursing home, mortality, use of antipsychotic medications during hospital stay and cognitive and physical function at 6 months postdischarge. This trial has been approved by the South Eastern Sydney Human Research and Ethics Committee. Dissemination plans include submission to a peer-reviewed journal for publication and presentation at scientific conferences. ACTRN12618000318280.
Publisher: Wiley
Date: 30-10-2017
DOI: 10.1111/AJCO.12818
Publisher: Elsevier BV
Date: 2019
Publisher: Elsevier BV
Date: 05-2015
DOI: 10.1016/J.JPAINSYMMAN.2014.09.013
Abstract: Does octreotide reduce vomiting in cancer-associated bowel obstruction? To evaluate the net effect of adding octreotide or placebo to standardized therapies on the number of days free of vomiting for populations presenting with vomiting and inoperable bowel obstruction secondary to cancer or its treatment. Twelve services enrolled people with advanced cancer presenting with vomiting secondary to bowel obstruction where surgery or anti-cancer therapies were not indicated immediately. In a double-blind study, participants were randomized to placebo or octreotide (600 μg/24 hours by infusion). Both arms received standardized supportive therapy (infusion of ranitidine [200 mg/24 hours], dexamethasone [8 mg/24 hours], and parenteral hydration [10-20 mL/kg/24 hours]). The primary outcome was patient-reported days free of vomiting at 72 hours. In a study that recruited to the numbers identified in its power calculation, 87 participants provided data at 72 hours (45, octreotide arm). Seventeen people (octreotide) and 14 (placebo) were free of vomiting for 72 hours (P = 0.67). Mean days free of vomiting were 1.87 (SD 1.10 octreotide) and 1.69 (SD 1.15 placebo P = 0.47). An adjusted multivariate regression of the incidence of vomiting over the study showed a reduced number of episodes of vomiting in the octreotide group (incidence rate ratio = 0.40 95% CI: 0.19-0.86 P = 0.019) however, people in the octreotide arm were 2.02 times more likely to be administered hyoscine butylbromide (P = 0.004), potentially reflecting increased colicky pain. Although there was no reduction in the number of days free of vomiting, the multivariate analysis suggests that further study of somatostatin analogues in this setting is warranted.
Publisher: Elsevier BV
Date: 05-2020
Publisher: SAGE Publications
Date: 26-07-2019
Abstract: The provision of supported decision-making for people living with disabilities is an emerging area of practice and rights-based law reform, and is required under international law. This qualitative study aimed to understand how Australian health and legal professionals conceptualised their professional roles in the practice of providing decision-making support for people living with dementia. The methods were informed by grounded theory principles. In-depth, semi-structured interviews were conducted with 28 health and legal professionals involved in providing care or services for people with dementia. Interviews explored how professionals described their practice of providing support for decision-making and how they conceptualised their roles. The analysis was underpinned by the theoretical perspective of symbolic interactionism. Participants described providing support across a range of decision domains, some of which were specific to their professional role. Four key themes were identified: ‘establishing a basis for decision-making’, ‘the supportive toolbox’, ‘managing professional boundaries’ and ‘in idualist advocacy versus relational practice’. Participants identified a range of generic and specialised techniques they used to provide support for people with dementia. These techniques were applied subject to resource limitations and perceived professional obligations and boundaries. A continuum of professional practice, ranging from ‘in idualist advocacy’ to ‘relational practice’ describes the approaches adopted by different professionals. Professionals conceptualised their role in providing support for decision-making through the lens of their own profession. Differences in positioning on the continuum of ‘in idualist advocacy’ through to ‘relational practice’ had practical implications for capacity assessment, engaging with persons with impaired decision-making capacity, and the inclusion of supporters and family members in decision-making processes. Further progress in implementing supported decision-making (including through law and policy reform) will require an understanding of these inter-professional differences in perceived roles relating to the practice of providing decision-making support.
Publisher: Springer Science and Business Media LLC
Date: 21-10-2020
DOI: 10.1186/S12904-020-00669-Z
Abstract: Delirium is highly problematic in palliative care (PC). Preliminary data indicate a potential role for melatonin to prevent delirium, but no randomized controlled trials (RCTs) are reported in PC. Patients aged ≥18 years, with advanced cancer, admitted to an inpatient Palliative Care Unit (PCU), having a Palliative Performance Scale rating ≥ 30%, and for whom consent was obtained, were included in the study. Patients with delirium on admission were excluded. The main study objectives were to assess the feasibility issues of conducting a double-blind RCT of exogenous melatonin to prevent delirium in PC: recruitment, retention, procedural acceptability, appropriateness of outcome measures, and preliminary efficacy and safety data. Study participants were randomized in a double-blind, parallel designed study to receive daily melatonin 3 mg or placebo orally at 21:00 over 28 days or less if incident delirium, death, discharge or withdrawal occurred earlier. Delirium was diagnosed using the Confusion Assessment Method. Efficacy endpoints in the melatonin and placebo groups were compared using time-to-event analysis: days from study entry to onset of incident delirium. Over 16 months, 60/616 (9.7% 95% CI: 7.5–12.4%) screened subjects were enrolled. The respective melatonin ( n = 30) vs placebo ( n = 30) outcomes were: incident delirium in 11/30 (36.7% 95%CI: 19.9–56.1%) vs 10/30 (33% 95% CI: 17.3–52.8%) early discharge (6 vs 5) withdrawal (6 vs 3) death (0 vs 1) and 7 (23%) vs 11 (37%) reached the 28-day end point. The 25th percentile time-to-event were 9 and 18 days (log rank, χ 2 = 0.62, p = 0.43) in melatonin and placebo groups, respectively. No serious trial medication-related adverse effects occurred and the core study procedures were acceptable. Compared to those who remained delirium-free during their study participation, those who developed delirium ( n = 21) had poorer functional ( p = 0.036) and cognitive performance ( p = 0.013), and in particular, poorer attentional capacity ( p = 0.003) at study entry. A larger double-blind RCT is feasible, but both subject accrual and withdrawal rates signal a need for multisite collaboration. The apparent trend for shorter time to incident delirium in the melatonin group bodes for careful monitoring in a larger trial. Registered on July 21st 2014 with ClinicalTrials.gov : NCT02200172 .
Publisher: Mark Allen Group
Date: 02-2011
DOI: 10.12968/IJPN.2011.17.2.80
Abstract: Palliative care clients often have a reduced quality of life (QOL). The purpose of this study was to explore the QOL trajectory of clients and carers newly referred to a community palliative care service. A total of 49 clients and 43 carers respectively completed the McGill QOL scale (MQOL) and the caregiver QOL cancer scale (CQOLC) questionnaires. Baseline data relating to demographics, health status, and QOL are presented for the 49 participants and their 43 carers, and these are compared with follow-up data from 22 clients and 13 carers (matched pairs). On average, there were no significant differences between baseline and follow-up QOL scores in any respects for either clients or carers, including measures of burden, disruptiveness, positive adaptation, and financial concerns. Whether this indicates that the care administered succeeded in cancelling out the worsening of the clients' conditions or whether it indicates a shortcoming of the care was not assessed.
Publisher: SAGE Publications
Date: 10-11-2021
DOI: 10.1177/17423953211054033
Abstract: To examine sociodemographic characteristics and caring experiences associated with being an older rather than younger carer of an adult with a chronic health condition. The population-based cross-sectional South Australian Health Omnibus survey was administered in 2016. Multiple logistic regression was used to identify sociodemographic characteristics and caring experiences associated with being an older (≥65 years) versus younger ( years) carer of one or more adult(s) with a chronic health condition. Of 988 survey respondents who self-identified as carers, 198(20%) were 65 years or over. Characteristics associated with being an older carer included having a partner, having poor physical health, being born outside Australia, have no formal qualification, living in a household of 1–2 people, have an annual household income ≤$60,000, and owning one's home. Carer experiences associated with older carer status included providing ≥40 h of care per week, perceived control over caring, and caring for someone with a neurological condition, whereas caring for someone with a mental illness, reporting poor mental health of their own, and providing personal care were inversely associated. Interventions directed at older carers should consider the increased likelihood that they may be investing large amounts of time in caring for someone with a neurological condition, and be culturally and linguistically erse.
Publisher: American Society of Clinical Oncology (ASCO)
Date: 20-05-2012
DOI: 10.1200/JCO.2012.30.15_SUPPL.TPS9153
Abstract: TPS9153 Background: Bowel obstruction due to advanced cancer that is surgically inoperable is a major management problem. Studies to date have either been underpowered or have used comparators that may not draw on the best available evidence. Methods: This double-blind, block randomised, placebo controlled, set dose, parallel arm study was conducted across 12 sites in Australia. Eligibility included inoperable bowel obstruction secondary to cancer or its treatments. The intervention was the addition of infusional octreotide or placebo in addition to 200mg ranitidine per 24 hours parenterally and 4mg per 24 hours parenterally of dexamethasone. The primary outcome measure was the numbers of days free of vomiting up to 72 hours after all medications were administered the first time. Participants were also administered between 10-20mls per hour of subcutaneous isotonic fluid over the 72 hour period. Results: This study will close to recruitment in March 2012. To date 89 of 92 required participants have been randomised. Conclusions: This adequately powered study will define the additional net clinical benefit derived from octreotide over placebo in people who have an anti-secretary agent (ranitidine) and glucocorticoids (dexamethasone).
Publisher: Mary Ann Liebert Inc
Date: 10-2018
Abstract: Prescribing medications for nursing home residents with advanced dementia should focus on optimizing function and comfort, reducing unnecessary harms and aligning care goals with a palliative approach. The aim of the study was to estimate the proportion of Australian nursing home residents with advanced dementia receiving potentially inappropriate medications, and identify those most commonly prescribed and factors associated with their use. Data were collected through retrospective audit of medication charts. Two hundred eighteen nursing home residents with advanced dementia from 20 nursing homes participated in a cluster-randomized controlled trial of case conferencing (the IDEAL Study) from June 2013 to December 2014. Inappropriate drug use was defined as medications classified as "never appropriate" by the Palliative Excellence in Alzheimer Care Efforts (PEACE) program criteria. Generalized linear mixed models were used to identify variables predicting use of "never" appropriate medications. Over a quarter (n = 65, 30%) of residents received at least one medication classed as "never" appropriate, the most common being lipid-lowering agents (n = 38, 17.4%), antiplatelet agents (n = 18, 8.3%), and acetylcholinesterase inhibitors (n = 16, 7.3%). Residents who had been at the nursing home for ≤10 months (odds ratio [OR] 5.60, 95% confidence interval [CI] 1.74-18.06) and 11-21 months (OR 5.41, 95% CI 1.67-17.75) had significantly greater odds of receiving a never appropriate medication compared with residents who had been at the nursing home for >5 years. Use of potentially inappropriate medications in Australian nursing home residents with advanced dementia is common. A greater understanding of the rationale that underpins prescribing of medications is required.
Publisher: Mary Ann Liebert Inc
Date: 03-2011
Abstract: Continuous quality improvement is fundamental in all health care, including hospice and palliative care. Identifying and systematically reducing symptomatic adverse events is limited in hospice and palliative care because these events are mostly attributed to disease progression. The aim of this study was to assess the feasibility of symptomatic adverse events in hospice and palliative care and assessing their incidence. A retrospective, consecutive cohort of notes from a specialist palliative care inpatient service was surveyed by a clinical nurse consultant for symptomatic adverse events: falls, confusion, decreased consciousness, hypo- and hyperglycaemia, urinary retention, and hypotension. Demographic and clinical factors were explored for people at higher risk. Data were available on the most recent admissions of 65 people, generating >900 inpatient days. Fifty people (78%) had events precipitating admission, of whom 31 (62%) had at least one further event during admission. Eleven of 15 people who were admitted without an event experienced at least one during their admissions. Only 4 did not have an adverse event. During their stay, there were 0.13 (standard deviation [SD] = 0.19) events per patient per day. No drug-drug or drug-host events were noted. No clinical or demographic factors predicted groups at higher risk. This pilot highlights the feasibility of collecting, and ubiquity of, symptomatic adverse events, and forms a baseline against which future interventions to decrease the frequency or intensity can be measured. Given the frailty of hospice and palliative patients, any adverse event is likely to accelerate irreversibly their systemic decline.
Publisher: Elsevier BV
Date: 12-2020
Publisher: Scientific Research Publishing, Inc.
Date: 2022
Publisher: British Medical Journal Publishing Group
Date: 03-2018
Publisher: Mary Ann Liebert Inc
Date: 12-2011
Publisher: SAGE Publications
Date: 20-03-2009
Abstract: Palliative oxygen for refractory dyspnoea is frequently prescribed, even when the criteria for long-term home oxygen (based on survival, rather than the symptomatic relief of breathlessness) are not met. Little is known about how palliative home oxygen affects symptomatic breathlessness. A 4 -year consecutive cohort from a regional community palliative care service in Western Australia was used to compare baseline breathlessness before oxygen therapy with dyspnoea sub-scales on the symptom assessment scores (SAS 0–10) 1 and 2 weeks after the introduction of oxygen. Demographic and clinical characteristics of people who responded were included in a multi-variable logistic regression model. Of the study population ( n = 5862), 21.1% ( n = 1239) were prescribed oxygen of whom 413 had before and after data that could be included in this analysis. The mean breathlessness before home oxygen was 5.3 (SD 2.5 median 5 range 0–10). There were no significant differences overall at 1 or 2 weeks ( P = 0.28) nor for any diagnostic sub-groups. One hundred and fifty people (of 413) had more than a 20% improvement in mean dyspnoea scores. In multi-factor analysis, neither the underlying diagnosis causing breathlessness nor the demographic factors predicted responders at 1 week. Oxygen prescribed on the basis of breathlessness alone across a large population predominantly with cancer does not improve breathlessness for the majority of people. Prospective randomised trials in people with cancer and non-cancer are needed to determine whether oxygen can reduce the progression of breathlessness compared to a control arm.
Publisher: Wiley
Date: 05-2011
DOI: 10.1111/J.1445-5994.2011.02484.X
Abstract: The direct burden of people whose goal of care is a palliative approach has not been estimated in the acute care setting. Using a single time point, cross-sectional survey of all inpatient beds, an estimate was generated across a network of three South Australian public hospitals. One in three inpatients had a palliative approach as the goal of care and of these, only one in five had been referred to specialist palliative care services. Those referred were significantly more likely to have cancer and be younger men. Active recognition and documentation that a palliative approach frames the goals of care for this person needs to be incorporated more systematically into clinical practice in the acute care setting. At the same time, triggers for needs-based referral for specialist assessment should be implemented. Specialist palliative care services must also provide direct care for a wider range of patients than just those with cancer.
Publisher: American Society of Clinical Oncology (ASCO)
Date: 20-05-2012
DOI: 10.1200/JCO.2012.30.15_SUPPL.2604
Abstract: 2604 Background: The dissociative anaesthetic ketamine is widely used for cancer related pain. A Cochrane review concluded that insufficient evidence was available to support its use in this setting. Methods: This phase III, multisite, double-blind, dose escalation, placebo, randomised controlled study aimed to determine whether ketamine, delivered subcutaneously over three to five days is more effective than placebo, when used in conjunction with adjuvant therapy in the management of chronic uncontrolled cancer pain. Ketamine would be considered to be of net benefit if it provided a reduction in average pain scores by ≥2/10 points from baseline, with limited breakthrough analgesia and acceptable toxicity. Results: For the 185 participants, there was no significant difference between the proportion of positive outcomes (0.04 (-0.10, 0.18) p=0.55) in the placebo and intervention arms (response rates 27% (25/92) and 31% (29/93)). Pain type (nociceptive versus neuropathic) was not a predictor of response. There was almost twice the incidence of adverse events worse than baseline in the ketamine group after day 1 (IRR = 1.95 (1.46, 2.61), p .001) and throughout the study. Those receiving ketamine were more likely to experience a more severe grade of adverse event/day (OR=1.09 (1.00, 1.18), p=0.039). The number needed to treat for one additional patient to get a positive outcome from ketamine was 25 (6, ∞). The number needed to harm, because of toxicity-related withdrawal was 6 (4, 13). Conclusions: Ketamine does not have net clinical benefit when used as an adjunct to opioids and standard co-analgesics in cancer pain.
Publisher: Elsevier BV
Date: 07-2022
Publisher: Elsevier BV
Date: 04-2011
DOI: 10.1016/J.JPAINSYMMAN.2010.06.017
Abstract: Health and social services rely heavily on family and friends for caregiving at the end of life. This study sought to determine the prevalence and factors associated with an unwillingness to take on the caregiving role again by interviewing former caregivers of palliative care patients. The setting for this study was South Australia, with a population of 1.6 million people (7% of the Australian population) and used the South Australian Health Omnibus, an annual, face-to-face, cross-sectional, whole-of-population, multistage, systematic area s ling survey, which seeks a minimum of 3000 respondents each year statewide. One interview was conducted per household with the person over the age of 15 who most recently had a birthday. Using two years of data (n=8377 65.4% participation rate), comparisons between those who definitely would care again and those who would not was undertaken. One in 10 people across the community provided hands-on care for someone close to them dying an expected death in the five years before being interviewed. One in 13 (7.4%) former caregivers indicated that they would not provide such care again irrespective of time since the person's death and despite no reported differences identified in unmet needs between those who would and would not care again. A further one in six (16.5%) would only "probably care again." The regression model identified that increasing age lessens the willingness to care again (odds ratio [OR] 3.94 95% confidence interval [CI] 1.56, 9.95) and so does lower levels of education (OR 0.413 95% CI 0.18, 0.96) controlling for spousal relationship. These data suggest that assessment of willingness to care needs to be considered by clinical teams, especially in the elderly. Despite most active caregivers being willing to provide care again, a proportion would not.
Publisher: American Society of Clinical Oncology (ASCO)
Date: 12-2018
DOI: 10.1200/JCO.2018.36.34_SUPPL.63
Abstract: 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.
Publisher: Wiley
Date: 21-01-2021
DOI: 10.1002/ALZ.12262
Abstract: This review aims to systematically identify and appraise the methodological quality of claims on the cost of delirium and discuss challenges and opportunities for improvements in the precision of the estimates. Searches of scientific papers and gray literature were performed up until June 2020. The Larg and Moss checklist was used to assess the methodological quality of the included studies. After deduplication, the search identified 317 potentially relevant articles, of which 17 articles were eligible for inclusion. After adjusting for inflation and common currency, the cost of delirium ranged between $806 and $24,509 (in 2019 US$). This review found significant variation among the cost estimates and methodological quality. There has been limited focus on dementia as a sequela of delirium in terms of economic implications, but recent evidence suggests cost implications of delirium may be 52% higher when dementia is considered.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 19-04-2021
DOI: 10.1097/CCM.0000000000005028
Abstract: Delirium in critically ill adults is highly prevalent and has multiple negative consequences. To-date, trials of interventions to prevent or treat delirium report heterogenous outcomes. To develop international consensus among key stakeholders for a core outcome set for future trials of interventions to prevent and/or treat delirium in critically ill adults. Core outcome set development, as recommended by the Core Outcome Measures in Effectiveness Trials Handbook. Methods of generating items for the core outcome set included a systematic review and qualitative interviews with ICU survivors and family members. Consensus methods include a two-round web-based Delphi process and a face-to-face meeting using nominal group technique methods. International representatives from three stakeholder groups: 1) clinical researchers, 2) ICU interprofessional clinicians, and 3) ICU survivors and family members. Telephone interviews, web-based surveys, and a face-to-face consensus meeting held at the 2019 European Delirium Association’s annual meeting in Edinburgh, Scotland. None. Qualitative interviews with 24 ICU survivors and family members identified 36 potential outcomes six were additional to the 97 identified from the systematic review. After item reduction, 32 outcomes were presented in Delphi Round 1 179 experts participated, 38 ICU survivors/family members (21%), 100 clinicians (56%), 41 researchers (23%). Three additional outcomes were added to Round 2 134 Round 1 participants (75%) completed it. Upon conclusion of the consensus building processes, the final core outcome set comprised seven outcomes: delirium occurrence (including prevalence or incidence) delirium severity time to delirium resolution health-related quality of life emotional distress (i.e., anxiety, depression, acute and posttraumatic stress) cognition (including memory) and mortality. This core outcome set, endorsed by the American and Australian Delirium Societies and European Delirium Association, is recommended for future clinical trials evaluating delirium prevention or treatment interventions in critically ill adults.
Publisher: Elsevier BV
Date: 08-2014
Publisher: Wiley
Date: 17-12-2014
DOI: 10.1111/AJCO.12040
Abstract: Cancer pain continues to be undertreated in up to half of cases, despite the availability of evidence-based guidelines. This study aimed to: (i) identify barriers and facilitators to adult cancer pain assessment and management, as perceived by Australian health professionals (ii) establish the perceived need for new Australian guidelines and implementation strategy (iii) identify which guidelines are used (iv) identify barriers and facilitators to guideline use. This article focuses on the perceptions of responding oncologists. A cross-sectional survey was administered online. Invitations were circulated via peak bodies and clinical leaders. Comments were coded independently by two researchers. In all 76 oncologists self-reported high concordance with evidence-based recommendations, except validated pain scales. Perceived barriers to pain management included insufficient non-pharmacological interventions, access to /coordination between services, and time. Only 22 percent of respondents reported using pain guidelines. Perceived barriers to guideline use included lack of access, awareness and any single standard. Respondents were generally supportive of new Australian guidelines and especially an implementation strategy. Barriers to evidence-based practice and guideline use identified by our survey might be addressed via a clinical pathway that gives step-by-step guidance on evidence-based practice along with a framework for evaluation. Particular attention should be paid to promoting use of validated scales, patient education and non-pharmacological interventions, training of an appropriately skilled workforce and improving care coordination. Challenges are discussed.
Publisher: Elsevier BV
Date: 08-2014
Publisher: Mary Ann Liebert Inc
Date: 09-2010
Publisher: SAGE Publications
Date: 10-2019
Abstract: Treating chronic, uncontrolled, cancer pain with subcutaneous ketamine in patients unresponsive to opioids and co-analgesics remains controversial, especially in light of recent evidence demonstrating ketamine does not have net clinical benefit in this setting. To evaluate the cost-effectiveness of subcutaneous ketamine versus placebo in this patient population. A within-trial cost-effectiveness analysis of the Australian Palliative Care Clinical Studies Collaborative’s randomised, double-blind, placebo-controlled trial of ketamine was conducted from a healthcare provider perspective. Mean costs and outcomes were estimated from participant-level data over 5 days including positive response, health-related quality of life (HrQOL) measured with the Functional Assessment of Chronic Illness Therapy–Palliative Care (FACIT-Pal), ketamine costs, medication usage and in-patient stays. There was no statistically significant difference in responder rates, but higher toxicity and worse HrQOL for ketamine participants (mean change −3.10 (standard error (SE) 1.76), ketamine n = 93 4.53 (SE 1.38), placebo n = 92). Estimated total mean costs were AU$706 higher per ketamine participant (AU$6608) compared with placebo (AU$5902), attributable to the cost of higher in-patient costs as well as costs of ketamine administration. The results were robust to sensitivity analyses accounting for different medication use costing methods and removal of cost outliers. The findings suggest subcutaneous ketamine in conjunction with opioids and standard adjuvant therapy is neither an effective nor cost-effective treatment for refractory pain in advanced cancer patients.
Publisher: Springer Science and Business Media LLC
Date: 11-05-2022
DOI: 10.1007/S11864-022-00987-9
Abstract: Delirium is a common medical complication in people living with cancer, particularly with more advanced disease. Delirium is associated with significant symptom burden which causes distress and impacts quality of life. As recommended by international guidelines, a high degree of suspicion is needed to ensure delirium is detected early. Attention to collateral history can provide clues to changes in cognition and attention. Non-pharmacological approaches that can be considered essential elements of care are effective in reducing the risk of delirium. Delirium screening using a validated measure is recommended as even expert clinicians can underdiagnose or miss delirium. The diagnostic assessment requires consideration of the cancer diagnosis and comorbidities, in the context of potential reversibility, goals of care, and patient preferences. The gold standard approach based on expert consensus is to institute management for delirium precipitants supported by non-pharmacological essential care, with the support of an interdisciplinary team. Medication management should be used sparingly and for a limited period of time wherever possible for severe perceptual disturbance or agitation which has not improved with non-pharmacological approaches. Clinicians should be familiar with the registered indication for medications and seek informed consent for off-label use. All interventions put in place to manage delirium need to consider net clinical benefit, including harms such as sedation and loss of capacity for meaningful interaction. Clear communication and explanation are needed regularly, with the person with delirium as far as possible and with surrogate decision makers. Delirium can herald a poor prognosis and this needs to be considered and be discussed as appropriate in shared decision-making. Recall after delirium has resolved is common, and opportunity to talk about this experience and the related distress should be offered during the period after recovery.
Publisher: Springer Science and Business Media LLC
Date: 07-2023
DOI: 10.1007/S00520-023-07889-Y
Abstract: This study asked consumers (patients, carers) and healthcare professionals (HCPs) to identify the most important symptoms for adults with cancer and potential treatment interventions. A modified Delphi study was conducted involving two rounds of electronic surveys based on prevalent cancer symptoms identified from the literature. Round 1 gathered information on participant demographics, opinions and/or experience on cancer symptom frequency and impact, and suggestions for interventions and/or service delivery models for further research to improve management of cancer symptoms. In Round 2, respondents ranked the importance of the top ten interventions identified in Round 1. In Round 3, separate expert panels of consumers and healthcare professionals (HCPs) attempted to reach consensus on the symptoms and interventions previously identified. Consensus was reached for six symptoms across both groups: fatigue, constipation, diarrhoea, incontinence, and difficulty with urination. Notably, fatigue was the only symptom to reach consensus across both groups in Round 1. Similarly, consensus was reached for six interventions across both groups. These were the following: medicinal cannabis, physical activity, psychological therapies, non-opioid interventions for pain, opioids for breathlessness and cough, and other pharmacological interventions. Consumers and HCPs prioritise differently however, the symptoms and interventions that reached consensus provide a basis for future research. Fatigue should be considered a high priority given its prevalence and its influence on other symptoms. The lack of consumer consensus indicates the uniqueness of their experience and the need for a patient-centred approach. Understanding in idual consumer experience is important when planning research into better symptom management.
Publisher: Springer International Publishing
Date: 2019
Publisher: BMJ
Date: 10-2015
Publisher: Oxford University Press (OUP)
Date: 11-2020
DOI: 10.1093/NEUONC/NOAA215.748
Abstract: Symptoms of raised intracranial pressure (ICP) in recurrent or progressive high-grade glioma (HGG) generally require corticosteroid treatment, often causing toxicity with variable effects on reversing ICP symptoms. Acetazolamide reduces ICP in other clinical settings including case series in glioma. To explore whether addition of oral acetazolamide enables safe dexamethasone dose reduction in management of raised ICP in recurrent and/or progressive HGG. Participants had recurrent, progressive and/or persistent residual HGG requiring recommencement of dexamethasone, dose increase or dexamethasone dependency prior/current bevacizumab was an exclusion. Eligible participants were randomised 1:1 to acetazolamide 250mg twice daily or placebo for 8 weeks. Standardised protocols were used for dexamethasone dose changes in both arms, with planned dose decrease from day 5 once ICP symptoms were stable. The primary endpoint was a composite of dexamethasone dose reduction and stability of performance status. Secondary endpoints included toxicity and feasibility (accrual and compliance). Thirty participants of a planned s le of 84 were enrolled (mean age 58 y (32-89)) from 7 Australian sites. The mean baseline dexamethasone dose was 6.2mg (4-16mg). Mean duration on treatment was 38 days (4-57) in placebo group and 31 days (3-60) in acetazolamide group, with 9 participants (30%) completing all study treatment (6 placebo, 3 acetazolamide). Study withdrawal was due to adverse events (n=6 (1 placebo, 5 acetazolamide)) and disease progression (n=6 (3 per arm)). Four participants (13%) (2 per arm) were stable responders meeting the primary endpoint criteria (≥50% corticosteroid dose reduction from baseline by 28 days maintained for 7 days, and no deterioration in performance status). Ten participants experienced a total of 13 serious adverse events (acetazolamide arm: 5 participants (33%), 6 events, 2 related). The addition of acetazolamide did not facilitate dexamethasone reduction. The study closed early due to poor accrual and increasing availability of bevacizumab.
Publisher: Elsevier BV
Date: 08-2022
DOI: 10.1016/J.CRITREVONC.2022.103728
Abstract: Examining and addressing unmet care needs is integral to improving the provision and quality of cancer services. This review explored the prevalence of unmet supportive care needs, and factors associated with unmet need, in adults with advanced cancers (solid and hematological malignancies) and their caregivers. Electronic databases (PubMed, CINAHL, EMBASE) were searched, producing 85 papers representing 81 included studies. People with advanced cancer reported the highest unmet needs in financial, health system and information, psychological, and physical and daily living domains, whereas caregivers reported the highest unmet needs in psychological, and patient care and support domains. Distress, depression, and anxiety were associated with higher unmet needs across all unmet need domains for people with advanced cancer and their caregivers. Substantial heterogeneity in study populations and methods was observed. Findings from this review can inform targeted strategies and interventions to address these unmet needs in people with advanced cancer.
Publisher: BMJ
Date: 23-02-2016
DOI: 10.1136/BMJSPCARE-2014-000825
Abstract: Real-world effectiveness of many medications has been poorly researched, including in hospice alliative care. Directly extrapolating findings from other clinical settings may not yield robust clinical advice. Pharmacovigilance studies provide an opportunity to understand better the net impact of medications. The study aimed to examine immediate and short-term benefits and harms of pregabalin in routine practice for neuropathic pain in hospice alliative care. A consecutive cohort of 155 patients from 62 centres in 5 countries was started on pregabalin and studied prospectively. Data were collected at three time points: baseline day 7 (immediate, short-term harms) ad hoc reports of any harms ≤21 days and day 21 (short-term benefits). Median dose for 155 patients at day 21 was 150 mg/24 h. Benefits were reported by 61 patients (39%), of whom 11 (7%) experienced complete pain resolution. Harms were reported by 51 (35%) patients at or before 7 days, the most frequent of which were somnolence, fatigue, cognitive disturbance and dizziness. 10 patients (6%) ceased pregabalin due to harms, but 82 patients (53%) were being treated at 21 days. In regression modelling, people with worse baseline pain derived more benefit (OR=8.5 (95% CI 2.5 to 28.68). Pregabalin delivered benefit to many patients, with 4 of 10 experiencing pain reductions by 21 days. Harms, occurring in 1 in 3 patients, may be difficult to detect in clinical practice, as they mostly involve worsening of symptoms prevalent at baseline.
Publisher: BMJ
Date: 26-08-2018
DOI: 10.1136/BMJSPCARE-2015-000908
Abstract: Non-invasive ventilation (NIV) is widely used in the management of acute and acute-on-chronic respiratory failure. Understanding the experiences of patients treated with NIV is critical to person-centred care. We describe the subjective experiences of in iduals treated with NIV for acute hypercapnic respiratory failure. Qualitative face-to-face interviews analysed using thematic analysis. Australian tertiary teaching hospital. In iduals with acute hypercapnic respiratory failure treated with NIV outside the intensive care unit. In iduals who did not speak English or were unable or unwilling to consent were excluded. 13 participants were interviewed. Thematic saturation was achieved. Participants described NIV providing substantial relief from symptoms and causing discomfort. They described enduring NIV to facilitate another chance at life. Although participants sometimes appeared passive, others expressed a strong conviction that they knew which behaviours and treatments relieved their distress. Most participants described gaps in their recollection of acute hospitalisation and placed a great amount of trust in healthcare providers. All participants indicated that they would accept NIV in the future, if clinically indicated, and often expressed a sense of compulsion to accept NIV. Participants' description of their experience of NIV was intertwined with their experience of chronic disease. Participants described balancing the benefits and burdens of NIV, with the goal of achieving another chance at life. Gaps in recall of their treatment with NIV were frequent, potentially suggesting underlying delirium. The findings of this study inform patient-centred care, have implications for the care of patients requiring NIV and for advance care planning discussions.
Publisher: BMJ
Date: 2019
DOI: 10.1136/BMJOPEN-2018-026177
Abstract: Delirium is a significant medical complication for hospitalised patients. Up to one-third of delirium episodes are preventable in older inpatients through non-pharmacological strategies that support essential human needs, such as physical and cognitive activity, sleep, hydration, vision and hearing. We hypothesised that a multicomponent intervention similarly may decrease delirium incidence, and/or its duration and severity, in inpatients with advanced cancer. Prior to a phase III trial, we aimed to determine if a multicomponent non-pharmacological delirium prevention intervention is feasible and acceptable for this specific inpatient group. The study is a phase II cluster randomised wait-listed controlled trial involving inpatients with advanced cancer at four Australian palliative care inpatient units. Intervention sites will introduce delirium screening, diagnostic assessment and a multicomponent delirium prevention intervention with six domains of care: preserving natural sleep maintaining optimal vision and hearing optimising hydration promoting communication, orientation and cognition optimising mobility and promoting family partnership. Interdisciplinary teams will tailor intervention delivery to each site and to patient need. Control sites will first introduce only delirium screening and diagnosis, later implementing the intervention, modified according to initial results. The primary outcome is adherence to the intervention during the first seven days of admission, measured for 40 consecutively admitted eligible patients. Secondary outcomes relate to fidelity and feasibility, acceptability and sustainability of the study intervention, processes and measures in this patient population, using quantitative and qualitative measures. Delirium incidence and severity will be measured to inform power calculations for a future phase III trial. Ethical approval was obtained for all four sites. Trial results, qualitative substudy findings and implementation of the intervention will be submitted for publication in peer-reviewed journals, and reported at conferences, to study sites and key peak bodies. ACTRN12617001070325 Pre-results.
Publisher: BMJ
Date: 03-2017
Publisher: Springer Science and Business Media LLC
Date: 16-01-2022
DOI: 10.1186/S12904-022-00901-Y
Abstract: Depression is prevalent in people with very poor prognoses (days to weeks). Clinical practices and perceptions of palliative physicians towards depression care have not been characterised in this setting. The objective of this study was to characterise current palliative clinicians’ reported practices and perceptions in depression screening, assessment and management in the very poor prognosis setting. In this cross-sectional cohort study, 72 palliative physicians and 32 psychiatrists were recruited from Australian and New Zealand Society of Palliative Medicine and Royal Australian and New Zealand College of Psychiatrists between February and July 2020 using a 23-item anonymous online survey. Only palliative physicians results were reported due to poor psychiatry representation. Palliative physicians perceived depression care in this setting to be complex and challenging. 40.0% reported screening for depression. All experienced uncertainty when assessing depression aetiology. Approaches to somatic symptom assessment varied. Physicians were generally less likely to intervene for depression than in the better prognosis setting. Most reported barriers to care included the perceived lack of rapidly effective therapeutic options (77.3%), concerns of patient burden and intolerance (71.2%), and the complexity in diagnostic differentiation (53.0%). 66.7% desired better collaboration between palliative care and psychiatry. Palliative physicians perceived depression care in patients with very poor prognoses to be complex and challenging. The lack of screening, variations in assessment approaches, and the reduced likelihood of intervening in comparison to the better prognosis setting necessitate better collaboration between palliative care and psychiatry in service delivery, training and research.
Publisher: European Respiratory Society
Date: 15-09-2018
Publisher: SAGE Publications
Date: 2020
Abstract: Acupuncture has been proved effective for cancer related pain (CRP) in China, America and some other countries. However, there is relative lack of evidence to support the use of acupuncture for CRP in Australia. To assess the effectiveness and safety of acupuncture for management of CRP in a real-world setting and to understand cancer patients’ experience of undergoing acupuncture for CRP. A pragmatic randomised controlled trial will be conducted in South Western Sydney Local Health District (SWSLHD) in NSW, Australia. Adults with cancer related pain (n = 106) will be randomised in a 1:1 ratio to receive the acupuncture intervention up front versus after a wait list period of 4 weeks. Pain level (by Numerical Rating Scale), analgesic use, auricular acupressure frequency and adverse events will be assessed at baseline, mid-treatment and post-treatment. Expectancy on trial outcome (by Credibility and Expectancy questionnaire) will be assessed at baseline. The perspective of the participants (by an interview) will be recorded after the last intervention. We hypothesise that acupuncture will relieve cancer related pain at mid-treatment and post-treatment. We also hypothesise that few adverse events will be provoked by acupuncture. Australia New-Zealand Clinical Trial Registry (ACTRN12620000325909).
Publisher: Mary Ann Liebert Inc
Date: 02-2023
Publisher: Elsevier BV
Date: 04-2019
DOI: 10.1016/J.PMN.2018.05.004
Abstract: Pain in people with cancer is common but often under-recognized and under-treated. Guidelines can improve the quality of pain care, but need targeted strategies to support implementation. To test the feasibility of two service-level strategies for supporting guideline implementation: a screening system and medical record audit. Multimethods. One oncology outpatient service, and one palliative care outpatient and inpatient service. Patients with advanced cancer. Patients were screened in the waiting room with a modified version of the Edmonton Symptom Assessment System-revised either electronically or in paper-based format. Feasibility indicated the percentage of patients successfully screened from the total number attending the services. An audit assessed adherence to key indicators of pain assessment and management. Feasibility thresholds were set at 75% incidence for screening and a median of 30 minutes per patient for audit. Of 452 patient visits, 95% (n = 429) were successfully screened, 34% (n = 155) electronically and 61% (n = 274) paper-based. Electronic pain screening was technically challenging and time-intensive for nurses. Thirty-one patients consented to have their records audited. The median audit time was 37.5 minutes (range 10-120 minutes). Variability arose from the number and type of record (outpatient or inpatient). Adherence to indicators varied from 63% (pain assessment at first presentation) to 94% (regular pain assessment and medication prescribed at regular intervals). This study confirmed the need to implement evidence-based guidelines for cancer pain and generated useful insights into the feasibility of pain screening and audit.
Publisher: Elsevier BV
Date: 10-2017
DOI: 10.1016/J.IJNURSTU.2017.07.007
Abstract: Delirium is a serious acute neurocognitive condition frequently occurring for hospitalized patients, including those receiving care in specialist palliative care units. There are many delirium evidence-practice gaps in palliative care, including that the condition is under-recognized and challenging to assess. To report the meta-synthesis of a research project investigating delirium epidemiology, systems and nursing practice in palliative care units. The Delirium in Palliative Care (DePAC) project was a two-phase sequential transformative mixed methods design with knowledge translation as the theoretical framework. The project answered five different research questions about delirium epidemiology, systems of care and nursing practice in palliative care units. Data integration and metasynthesis occurred at project conclusion. There was a moderate to high rate of delirium occurrence in palliative care unit populations and palliative care nurses had unmet delirium knowledge needs and worked within systems and team processes that were inadequate for delirium recognition and assessment. The meta-inference of the DePAC project was that a widely-held but paradoxical view that palliative care and dying patients are different from the wider hospital population has separated them from the overall generation of delirium evidence, and contributed to the extent of practice deficiencies in palliative care units. Improving palliative care nurses' capabilities to recognize and assess delirium will require action at the patient and family, nurse, team and system levels. A broader, hospital-wide perspective would accelerate implementation of evidence-based delirium care for people receiving palliative care, both in specialist units, and the wider hospital setting.
Publisher: Springer International Publishing
Date: 2018
Publisher: American Medical Association (AMA)
Date: 08-11-2021
Publisher: Mary Ann Liebert Inc
Date: 12-10-2023
Publisher: Springer Science and Business Media LLC
Date: 28-01-2021
DOI: 10.1038/S41598-021-82120-8
Abstract: This multi-site, double blind, parallel arm, fixed dose, randomised placebo controlled phase III study compared megestrol acetate 480 mg/day with dexamethasone 4 mg/day for their net effects on appetite in people with cancer anorexia. Patients with advanced cancer and anorexia for ≥ 2 weeks with a score ≤ 4 (0–10 numeric rating scale (NRS) 0 = no appetite, 10 = best possible appetite) were recruited. Participants received megestrol 480 mg or dexamethasone 4 mg or placebo daily for up to 4 weeks. Primary outcomes were at day 7. Responders were defined as having a ≥ 25% improvement in NRS over baseline. There were 190 people randomised (megestrol acetate n = 61 dexamethasone n = 67, placebo n = 62). At week 1 (primary endpoint), 79·3% in the megestrol group, 65·5% in the dexamethasone group and 58·5% in the placebo group ( p = 0.067) were responders. No differences in performance status or quality of life were reported. Treatment emergent adverse events were frequent (90·4% of participants), and included altered mood and insomnia. Hyperglycemia and deep vein thromboses were more frequent when on dexamethasone than the other two arms. There was no difference in groups between the three arms, with no benefit seen over placebo with anorexia improving in all arms. Trail registration: The trial was registered on 19/08/2008 with the Australian New Zealand Clinical Trials Registry (ACTRN12608000405314).
Publisher: AME Publishing Company
Date: 03-2021
DOI: 10.21037/APM-20-1760
Publisher: Public Library of Science (PLoS)
Date: 07-04-2021
DOI: 10.1371/JOURNAL.PONE.0243254
Abstract: Despite the prevalence and impact of delirium, its pathophysiology remains unclear. In order to advance this field of research, robust scientific methodology is required, yet quality of reporting in this field of research has been highly inconsistent. Delirium biomarker research poses several challenges, none of which have been documented in the literature before. The aim of this study was to explore the perspectives of delirium researchers about key methodological issues in delirium biomarker research. Following a Delphi study with delirium experts resulting in 60 recommendations for reporting delirium biomarker studies, semi-structured interviews with international delirium researchers were conducted. Interviews were audio-taped and transcribed verbatim, followed by thematic analysis of the qualitative data. Fifteen participants were interviewed between August and November 2019. Most were male (n = 12 75%), clinician researchers (n = 13 86%), and had more than ten years’ experience in conducting delirium research (n = 9 60%). Analysis revealed two major themes and ten sub-themes, outlining key considerations to advance the field of delirium biomarker research. The major themes were: 1) Practical and scientific challenges of delirium biomarker research: stagnation versus driving improved methods and reporting and 2) Valuing delirium research through investment and collaboration. Findings identified a range of factors that contribute to the practical and ethical challenges of conducting delirium biomarker research, which have not previously been explicitly acknowledged or reported. A clear vision for collaborative efforts to enhance research quality for improved impact was also presented by the delirium researchers. This work complements the preceding Delphi and together these studies provide an in-depth understanding of what is needed in the field to inform and improve methods and reporting of delirium biomarker research.
Publisher: John Wiley & Sons, Ltd
Date: 11-11-2013
Publisher: Springer Science and Business Media LLC
Date: 09-04-2022
DOI: 10.1007/S11060-022-03991-Z
Abstract: This study aimed to: determine the supportive care available for Australian patients with High Grade Glioma (HGG) and their carers identify service gaps and inform changes needed to implement guidelines and Optimal Care Pathways. This cross-sectional online survey recruited multidisciplinary health professionals (HPs) who were members of the Cooperative Trials Group for Neuro-Oncology involved in management of patients diagnosed with HGG in Australian hospitals. Descriptive statistics were calculated. Fisher's exact test was used to explore differences between groups. 42 complete responses were received. A majority of MDT meetings were attended by a: neurosurgeon, radiation oncologist, medical oncologist, radiologist, and care coordinator. Less than 10% reported attendance by a palliative care nurse physiotherapist neuropsychologist or speech therapist. Most could access referral pathways to a cancer care coordinator (76%), neuropsychologist (78%), radiation oncology nurse (77%), or psycho-oncologist (73%), palliative care (93–100%) and mental health professionals (60–85%). However, few routinely referred to an exercise physiologist (10%), rehabilitation physician (22%), dietitian (22%) or speech therapist (28%). Similarly, routine referrals to specialist mental health services were not standard practice. Nearly all HPs (94%) reported HGG patients were advised to present to their GP for pre-existing conditions/comorbidities however, most HPs took responsibility (≤ 36% referred to GP) for social issues, mental health, symptoms, cancer complications, and treatment side-effects. While certain services are accessible to HGG patients nationally, improvements are needed. Psychosocial support, specialist allied health, and primary care providers are not yet routinely integrated into the care of HGG patients and their carers despite these services being considered essential in clinical practice guidelines and optimal care pathways.
Publisher: Springer Science and Business Media LLC
Date: 12-2017
Publisher: Mark Allen Group
Date: 02-01-2016
DOI: 10.12968/IJPN.2016.22.1.13
Abstract: Internationally, delirium prevalence in palliative care is reported to range between 26–88%, yet little is known about the occurrence of delirium in Australian palliative care inpatient populations. To: 1) ascertain 24-hour delirium point-prevalence in an Australian palliative care inpatient population 2) test the feasibility and acceptability of the delirium measurement methodology. This was a prospective cross-sectional study. Delirium was measured in patients of two palliative care units using the Nursing Delirium Screening Scale, Memorial Delirium Assessment Scale and DSM-5 diagnostic criteria. Descriptive statistics were used to report patient demographics, palliative care phase, function, delirium measure completion, and proportion of patients with a positive screen and diagnosis. Patients (n=47) had a mean age of 74 years (SD+10) and mostly malignant diagnoses (96%). All patients were screened for delirium, but few were capable of completing the Memorial Delirium Assessment Scale (n=2). One-third of patients (34%) screened positive for delirium and 19% were diagnosed as delirious according to the DSM-5. The Nursing Delirium Screening Scale and physician application of DSM-5 proved feasible and acceptable, while the Memorial Delirium Assessment Scale did not. Patients' advanced age and proportions screening positive for delirium and diagnosed as delirious attest to the need to rapidly recognise, assess and respond to patients experiencing this distressing disorder while being cared for in palliative care inpatient settings.
Publisher: Springer Science and Business Media LLC
Date: 22-04-2020
DOI: 10.1186/S12888-020-02584-2
Abstract: Delirium is a serious and distressing neurocognitive disorder of physiological aetiology that is common in advanced cancer. Understanding of delirium pathophysiology is largely hypothetical, with some evidence for involvement of inflammatory systems, neurotransmitter alterations and glucose metabolism. To date, there has been limited empirical consideration of the distinction between delirium pathophysiology and that of the underlying disease, for ex le, cancer where these mechanisms are also common in advanced cancer syndromes such as pain and fatigue. This systematic review explores biomarker overlap in delirium, specific advanced cancer-related syndromes and prediction of cancer prognosis. A systematic review (PROSPERO CRD42017068662) was conducted, using MEDLINE, PubMed, Embase, CINAHL, CENTRAL and Web of Science, to identify body fluid biomarkers in delirium, cancer prognosis and advanced cancer-related syndromes of interest. Studies were excluded if they reported delirium tremens only did not measure delirium using a validated tool the s le had less than 75% of participants with advanced cancer measured tissue, genetic or animal biomarkers, or were conducted post-mortem. Articles were screened for inclusion independently by two authors, and data extraction and an in-depth quality assessment conducted by one author, and checked by two others. The 151 included studies were conducted in erse settings in 32 countries between 1985 and 2017, involving 28130 participants with a mean age of 69.3 years. Seventy-one studies investigated delirium biomarkers, and 80 studies investigated biomarkers of an advanced cancer-related syndrome or cancer prognosis. Overall, 41 biomarkers were studied in relation to both delirium and either an advanced cancer-related syndrome or prognosis and of these, 24 biomarkers were positively associated with either delirium or advanced cancer syndromes rognosis in at least one study. The quality assessment showed large inconsistency in reporting. There is considerable overlap in the biomarkers in delirium and advanced cancer-related syndromes. Improving the design of delirium biomarker studies and considering appropriate comparator/controls will help to better understanding the discrete pathophysiology of delirium in the context of co-existing illness.
Publisher: Elsevier BV
Date: 10-2022
Publisher: SAGE Publications
Date: 06-06-2021
DOI: 10.1177/02692163211022183
Abstract: Recent studies cast doubt on the net effect of antipsychotics for delirium. To investigate the influence of these studies and other factors on clinicians’ delirium treatment practice and practice change in palliative care and other specialties using the Theoretical Domains Framework. Australia-wide online survey of relevant clinicians. Registered nurses (72%), doctors (16%), nurse practitioners (6%) and pharmacists (5%) who cared for patients with delirium in erse settings, recruited through health professionals’ organisations. Most of the s le ( n = 475): worked in geriatrics/aged (31%) or palliative care (30%) in hospitals (64%) and saw a new patient with delirium at least weekly (61%). More (59%) reported delirium practice change since 2016, mostly by increased non-pharmacological interventions (53%). Fifty-five percent reported current antipsychotic use for delirium, primarily for patient distress (79%) and unsafe behaviour (67%). Common Theoretical Domains Framework categories of influences on respondents’ delirium practice were: emotion (54%) knowledge (53%) and physical (43%) and social (21%) opportunities. Palliative care respondents more often reported: awareness of any named key study of antipsychotics for delirium (73% vs 39%, p 0.001) changed delirium treatment (73% vs 53%, p = 0.017) decreased pharmacological interventions (60% vs 15%, p 0.001) off-label medication use (86% vs 51%, p 0.001: antipsychotics 79% vs 44%, p 0.001 benzodiazepines 61% vs 26%, p 0.001) and emotion as an influence (82% vs 39%, p 0.001). Clinicians’ use of antipsychotic during delirium remains common and is primarily motivated by distress and safety concerns for the patient and others nearby. Supporting clinicians to achieve evidence-based delirium practice requires further work.
Publisher: Informa UK Limited
Date: 2008
DOI: 10.1080/15360280801992058
Abstract: Noisy breathing at the end of life (noisy breathing ("NB") occurs in up to 90% of people. Interventions have not been systematically evaluated. There has been clinical observation coupled with a proposed mechanism of effect that supports a role for octreotide in management of NB. The aim of this phase II study was to assess ten completed participants for the feasibility of an adequately powered phase III study. This randomized, double-blind, crossover pilot trial recruited participants from an inpatient palliative unit. Participants while well and their proxies simultaneously provided written informed consent. If NB were encountered, people were randomized to 200 mcg octreotide or 400 mcg hyoscine hydrobromide subcutaneously. If subsequent treatment was needed, the other medication was administered. A five point categorical scale documented the nurses' assessment of secretions over six hours. Eighty participants were consented of whom 10 (3 females, 7 males median age 79, all with advanced cancer) received medication, five in each arm. There was no difference in the median time to administration of the second medication (3 hours). Two participants in each arm had a 2 category reduction of intensity after the second medication. Although feasible to consent and study this population in a way that respects autonomy and dignity even in the terminal hours of life, this pilot study suggests reconsideration of the pharmacological interventions (choice of agents, dosing, timing of dosing and pharmacokinetic profiles), standardizing of non-pharmacological care and ways to measure directly family distress before further randomized studies for this symptom.
Publisher: European Delirium Association
Date: 21-12-2022
DOI: 10.56392/001C.57389
Abstract: Despite many studies of potential delirium biomarkers, delirium pathophysiology remains unclear. Evidence shows that the quality of reporting delirium biomarker studies is sub-optimal. Better reporting of delirium biomarker studies is needed to understand delirium pathophysiology better. To improve robustness, transparency and uniformity of delirium biomarker study reports, the REDEEMS (Reporting Essentials for DElirium bioMarker Studies) guideline was developed by an international group of delirium researchers through a three-stage process, including a systematic review, a three-round Delphi study, and a follow-up consensus meeting. This process resulted in a 9-item guideline to inform delirium fluid biomarker studies. To enhance implementation of the REDEEMS guideline, this Explanation and Elaboration paper provides a detailed explanation of each item. We anticipate that the REDEEMS guideline will help to accelerate our understanding of delirium pathophysiology by improving the reporting of delirium biomarker research and, consequently the capacity to synthesise results across studies.
Publisher: Elsevier BV
Date: 11-2023
Publisher: Elsevier BV
Date: 10-2020
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 12-2012
Publisher: Wiley
Date: 20-03-2020
DOI: 10.1002/GPS.5292
Publisher: JMIR Publications Inc.
Date: 25-04-2023
Abstract: he routine measurement of patient-reported outcomes in clinical cancer care using electronic patient-reported outcomes measures (ePROM) is gaining momentum worldwide. However, a deeper understanding of the mechanisms underpinning ePROM interventions that could inform their optimal design to improve health outcomes is needed. his study aimed to identify the implicit mechanisms that underpin the effectiveness of ePROM interventions and develop program theories about how and when ePROM interventions improve health outcomes. realist synthesis of the literature on ePROM interventions in clinical cancer care was performed. A conceptual framework of ePROM intervention was constructed to define the scope of the review and frame initial program theories. Literature searches of Ovid MEDLINE, Ovid Embase, Scopus and CINAHL, supplemented by citation tracking, were performed to identify relevant literature to develop, refine and test program theories. Quality appraisal of relevant studies was performed using the Mixed Methods Appraisal Tool (MMAT). ixty-one studies were included in the realist synthesis: 15 mixed-method studies, 9 qualitative studies, 13 descriptive studies, 21 randomised controlled trials and 3 quasi-experimental studies. Three initial program theories were developed concerning the salient components of ePROM interventions - remote self-reporting, real-time feedback to clinicians and clinician-patient telecommunication. The refined theories posit that: remote self-reporting enables patients to recognise and report symptoms accurately and empowers them to communicate these to clinicians real-time feedback prompts clinicians to manage symptoms proactively clinician-patient telephone and e-interactions between clinic encounters improve symptom management by reshaping how clinicians and patients communicate. However, the intervention may not achieve the intended benefit if ePROMs become a reminder to patients of their illness and are not meaningful to them, and when real-time feedback to clinicians lacks relevance and increases workload. he key to improving health outcomes through ePROM interventions is enabling better symptom reporting and communication through remote symptom self-reporting, promoting proactive management of symptoms through real-time clinician feedback, and facilitating clinician-patient interactions. Patient engagement with self-reporting and clinician engagement in responding to feedback is vital and may reinforce each other in improving outcomes. Effective ePROM interventions might fundamentally alter how clinicians and patients interact between clinic encounters. ROSPERO CRD42020221238
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 12-2017
Publisher: Elsevier BV
Date: 08-2022
DOI: 10.1016/J.IJROBP.2022.04.030
Abstract: The management of older adults with cancer is rapidly becoming a significant challenge in radiation oncology (RO) practice. The education of future radiation oncologists in geriatric oncology is fundamental to ensuring that older adults receive high-quality care. Currently RO trainees receive little training and education in geriatric oncology. The objective of this study was to define core geriatric RO curriculum learning outcomes relevant to RO trainees worldwide. A 2-stage modified Delphi consensus was conducted. Stage 1 involved the formation of an expert reference panel (ERP) of multiprofessional experts in geriatric oncology and/or RO and the compilation of a potential geriatric RO learning outcomes set. Stage 2 involved 3 iterative rounds: round 1 and round 2 (both online surveys), and an intervening ERP round. These aimed at identifying and refining ideal geriatric RO learning outcomes. Invited participants for round 1 and 2 included oncology health care professionals with expertise across RO, geriatric oncology, and/or education and consumers. Predefined Delphi consensus definitions were applied to the results of rounds 1 and 2. An ERP of 11 experts in geriatric oncology and/or RO was formed. Seventy potential knowledge- and skill-based learning outcomes were identified. In round 1, 103 of 179 invited eligible Delphi participants completed the survey (58% response rate). The ERP round was conducted, resulting in the exclusion of 28 learning outcomes. In round 2, 54 of 103 completed the survey (52% response rate). This identified a final total of 33 geriatric RO learning outcomes. The geriatric RO learning outcomes described in this study form an international consensus that can inform RO training bodies worldwide. This represents the first fundamental step in developing a global educational framework aimed at improving RO trainee knowledge and skills in geriatric oncology.
Publisher: Mark Allen Group
Date: 02-10-2016
Publisher: Mary Ann Liebert Inc
Date: 11-2013
Publisher: Wiley
Date: 14-04-2020
DOI: 10.1002/ALZ.12076
Publisher: Wiley
Date: 30-10-2007
Publisher: SAGE Publications
Date: 22-05-2015
Abstract: Dry mouth is a common and troublesome symptom in palliative care. Pilocarpine is a cholinergic agent that promotes salivation. This study aimed to test the feasibility of using n-of-1 trials to test pilocarpine drops compared to placebo, for patients of palliative care units with advanced cancer, who experienced dry mouth. This was an N-of-1 study, in which each participant was offered three cycles of pilocarpine drops 4% (6 mg tds) (3 days) and placebo drops (3 days) in random order. Participants were patients of specialist palliative care services with advanced cancer assessed as having a dry mouth, defined as having a score of ⩾3 on an 11-point self-rated xerostomia numerical rating scale, from any cause. Patients self-completed a diary using validated symptom and quality-of-life scores. The randomisation order was unmasked at the end of each person’s trial by a clinician independent of the trial to allow a treatment decisions for in idual patients to be made. Nine patients completed at least 1 cycle 33 cycles of data were completed in total, comprising 438 doses of pilocarpine. Four patients completed the trial: two responded and two did not. Most withdrawals related to deteriorating condition, unacceptable toxicity, non-compliance with study procedures or withdrawal of consent. Many issues contributed to slow recruitment and high withdrawal rate. The formulation of pilocarpine drops proved unacceptable to most participants. More work is required to determine an appropriate formulation, dose and method of delivery and then a retest of pilocarpine drops for this symptom.
Publisher: MDPI AG
Date: 02-03-2023
DOI: 10.3390/SU15054508
Abstract: This study maps the conceptual structure of the body of knowledge concerning bank risk to understand this research strand better. A bibliometric analysis including 671 publications from January 1978 to October 2022 was conducted to achieve the aim of the study. The analysis of descriptive indicators identifies the main traits of scholars debating bank risk in terms of the annual production of publications most productive authors, countries, affiliations, and journals and most cited articles in the dataset. This study performs a co-word analysis by adopting social network analysis tools to analyze the conceptual structure of the dataset. The results highlight growing academic interest in bank risk research topics, especially following the global financial crisis. The bibliometric analysis reveals three main topics concerning the consideration of bank risk: (1) the adoption of risk management and bank risk, (2) the use of bank risk during the financial crisis, and (3) the interrelations between corporate governance and bank risk.
Publisher: Springer Science and Business Media LLC
Date: 23-05-2019
DOI: 10.1007/S11096-019-00821-7
Abstract: Background Medication reviews by pharmacists have been shown to identify and reduce drug-related problems in long-term care residents. Objective To explore pharmacist perspectives of the Australian Government funded pharmacist-conducted residential medication management review and its role improving the quality and safety of prescribing in long-term care, in particular for those living with advanced dementia. Setting Australian Long-term care pharmacists. Method A qualitative research methodology approach using semi-structured interviews was used, with participants pharmacists with Residential Medication Management Review experience. Interviews were recorded, transcribed and coded utilising a meta-model of Physician-Community Pharmacy Collaboration in medication review. Main outcome measure Pharmacists' perspectives on the Residential Medication Management Review and how to improve the quality of reviews for residents with advanced dementia. Results Fifteen accredited pharmacists participated. The majority believed that the Residential Medication Management Review had the potential to improve the quality and safety of medicines but highlighted systemic issues that worked against collaborative practice. Participants emphasised the importance of three-way collaboration between general practitioners, pharmacists and nursing staff and highlighted key strategies for its optimisation. Conclusion Incorporating avenues for greater communication between team members can improve collaboration between health professionals and ultimately the quality of medication reviews.
Publisher: Springer Science and Business Media LLC
Date: 04-09-2016
DOI: 10.1007/S00520-015-2913-4
Abstract: Patients with advanced cancer typically experience multiple concurrent symptoms, which have a detrimental impact on patient outcomes. No studies to date have qualitatively explored advanced cancer patients' perceptions of multiple symptoms in oncology and palliative care settings. Understanding the experience of multiple symptoms can inform integrated clinical pathways for treating, assessing and reducing symptom burden. This study aims to describe the beliefs, attitudes and experiences of patients with multiple symptoms in advanced cancer. Semi-structured interviews were conducted with 58 advanced cancer patients (23 inpatients and 35 outpatients), recruited purposively from two palliative care centres and two hospital-based oncology departments in Sydney, Australia. Transcripts were analysed thematically. Six major themes were identified: imminence of death and deterioration (impending death, anticipatory fear) overwhelming loss of control (symptom volatility, debilitating exhaustion, demoralisation, isolation) impinging on autonomy and identity (losing independence, refusal to a diminished self, self-advocacy, reluctance to burden others) psychological adaptation (accepting the impossibility of recovery, seeking distractions, maintaining hope, mindfulness, accommodating self-limitations), burden of self-management responsibility (perpetual self-monitoring, ambiguity in self-report, urgency of decision making, optimising management) and valuing security and empowerment (safety in coordinated care, compassionate care, fear of medical abandonment, dependence on social support). Patients transitioning from oncology to palliative care settings were more vulnerable to self-management burden. Multiple symptoms have a profound impact on patients' autonomy, function and psychological state. Multiple symptom management and integrated care is needed to empower advanced cancer patients and reduce their struggles with self-management burden, hopelessness, isolation, fear of abandonment and mortality anxieties.
Publisher: Elsevier BV
Date: 06-2010
DOI: 10.1111/J.1753-6405.2010.00519.X
Abstract: The prevalence of chronic pain in Australia has only been previously estimated for the state of New South Wales. The aim of this study was to focus estimates on pain severe enough to interfere markedly with daily function irrespective of contact with health services in another region, South Australia. A whole of population random face-to-face survey method (n=2,973) was used, directly standardised against the whole population for age, gender, country of birth and rurality. Respondents were asked about chronic pain and the degree to which it interfered with daily activities. The prevalence of chronic pain was 17.9%, and pain that interfered extremely with activity 5.0%. Chronic pain was associated with older age, living alone, lower income, not being in full-time work and lower educational levels in bivariate analyses, however in multifactor analyses the only significant associations were not currently working (p<0.001) and lower levels of educational achievement (p=0.042). Pain that interfered extremely with activity in multifactor analysis was associated with work status where the odds ratio for work-related injury compared to those in full time work was 19.3 (95% CI 7.30-51.3 p<0.001). This study highlights the high levels of pain with extreme effects on day-to-day life (one in 20 people), the complex inter-relationships of the factors (educational achievement, work status) associated with chronic pain and the impacts that these factors have on the people experiencing such disabling pain in the long-term.
Publisher: Wiley
Date: 14-12-2022
DOI: 10.1111/JPC.15851
Abstract: Following the establishment of paediatric palliative care services over recent decades, this study sought to identify information to inform future policy and practice. A rapid review using thematic synthesis was conducted to synthesise existing information about improving paediatric palliative care. Information was extracted in relation to key areas for investment and change: quality, access, advance care planning, skills, research, collaboration and community awareness. A total of 2228 literature sources were screened, with 369 included. Synthesised information identified clear ways to improve quality of care, access to care, advance care planning, and research and data collection. The synthesis identified knowledge gaps in understanding how to improve skills in paediatric palliative care, collaboration across Australian jurisdictions and community awareness. The findings of this review bring together information from a vast range of sources to provide action-oriented information to target investment and change in paediatric palliative care over the coming decades.
Publisher: Mary Ann Liebert Inc
Date: 11-2016
Abstract: Delirium has a high mortality rate. Understanding predictors of prognosis in patients with delirium will aid treatment decisions and communication. This study aimed to explore variables associated with death during an established episode of delirium in palliative care when haloperidol treatment had been commenced. A consecutive cohort of palliative care patients, from 14 centers across four countries, is reported. The outcome of interest was death within 14 days from commencement of haloperidol treatment for delirium. Clinicodemographic variables explored were delirium severity, age, gender, primary life limiting illness, body mass index (BMI), total daily haloperidol dose at baseline (mg), functional status, and comorbidities. One hundred and sixteen palliative care patients where vital status was known were included in the analysis 45% (n = 52) died within 10 days, and 56% (n = 65) died within 14 days. In multivariate analyses no clinical or demographic variables predicted death, apart from lower BMI in noncancer patients. This study has shown a very high mortality rate within two weeks of commencing haloperidol for delirium in palliative care, with no clear clinical predictors for those with a higher chance of dying. Having a higher BMI offered some benefit in survival, but only in noncancer patients. When delirium occurs in advanced illness, discussion should be initiated about the gravity of the clinical situation.
Publisher: Springer Science and Business Media LLC
Date: 16-07-2018
Publisher: SAGE Publications
Date: 05-11-2012
Abstract: Regulatory bodies including the European Medicines Agency register medications (formulation, route of administration) for specific clinical indications. Once registered, prescription is at clinicians’ discretion. Off-label use is beyond the registered use. While off-label prescribing may, at times, be appropriate, efficacy and toxicity data are often lacking. The aim of this study was to document off-label use policies (including disclosure and consent) in Australian palliative care units and current practices by palliative care clinicians. A national, cross-sectional survey was conducted online following an invitation letter. The survey asked clinicians their most frequent off-label medication/indication dyads and unit policies. Dyads were classified into unregistered, off-label and on-label, and for the latter, whether medications were nationally subsidised. All Australian palliative medicine Fellows and advanced trainees. Overall, 105 clinicians responded (53% response rate). The majority did not have policies on off-label medications, and documented consent rarely. In all, 236 medication/indication dyads for 36 medications were noted: 45 dyads (19%) were for two unregistered medications, 118 dyads (50%) were for 26 off-label medications and 73 dyads (31%) were for 12 on-label medications. Off-label prescribing with its clinical, legal and ethical implications is common yet poorly recognised by clinicians. A distinction needs to be made between where quality evidence exists but registration has not been updated by the pharmaceutical sponsor and the evidence has not been generated. Further research is required to quantify any iatrogenic harm from off-label prescribing in palliative care.
Publisher: Oxford University Press
Date: 03-2015
DOI: 10.1093/MED/9780199656097.003.0175
Abstract: Delirium is the most common and serious neuropsychiatric complication in palliative care settings. It is a source of significant morbidity in patients, and often distresses family members and staff. Delirium is often a harbinger of impending death and can significantly interfere with pain and symptom control. Unfortunately delirium is often under-recognized or misdiagnosed in the terminally ill, and even when recognized, it frequently goes untreated or is inappropriately treated. Clinicians who care for patients with advanced illness must be able to diagnose delirium accurately, undertake appropriate assessment of aetiologies, and understand the risks and benefits of the pharmacological and non-pharmacological interventions currently available for managing delirium. Symptomatic treatment with antipsychotics or sedative medications is often necessary for the delirious patient with advanced illness to minimize distress to patients, families, and staff.
Publisher: American Medical Association (AMA)
Date: 02-2017
Publisher: Mary Ann Liebert Inc
Date: 06-2010
Abstract: Anti-cholinergic medications have been associated with increased risks of cognitive impairment, premature mortality and increased risk of hospitalisation. Anti-cholinergic load associated with medication increases as death approaches in those with advanced cancer, yet little is known about associated adverse outcomes in this setting. A substudy of 112 participants in a randomised control trial who had cancer and an Australia modified Karnofsky Performance Scale (AKPS) score (AKPS) of 60 or above, explored survival and health service utilisation with anti-cholinergic load calculated using the Clinician Rated Anti-cholinergic Scale (modified version) longitudinally to death. A standardised starting point for prospectively calculating survival was an AKPS of 60 or above. Baseline entry to the sub-study was a mean 62 +/- 81 days (median 37, range 1-588) days before death (survival), with mean of 4.8 (median 3, SD 4.18, range 1 - 24) study assessments in this time period. Participants spent 22% of time as an inpatient. There was no significant association between anti-cholinergic score and time spent as an inpatient (adjusted for survival time) (p = 0.94) or survival time. No association between anti-cholinergic load and survival or time spent as an inpatient was seen. Future studies need to include cognitively impaired populations where the risks of symptomatic deterioration may be more substantial.
Publisher: Mary Ann Liebert Inc
Date: 07-2013
Abstract: Breathlessness at rest or on minimal exertion despite optimal treatment of underlying cause(s) is distressing and prevalent. Opioids can reduce the intensity of chronic refractory breathlessness and an anxiolytic may be of benefit. This pilot aimed to determine the safety and feasibility of conducting a phase III study on the intensity of breathlessness by adding regular benzodiazepine to low-dose opioid. This is a single site, open label phase II study of the addition of regular clonazepam 0.5 mg nocte orally to Kapanol(R) 10 mg (sustained release morphine sulphate) orally mane together with docusate/sennosides in people with modified Medical Research Council Scale ≥2. Breathlessness intensity on day four was the efficacy outcome. Participants could extend for another 10 days if they achieved >15% reduction over their own baseline breathlessness intensity. Eleven people had trial medication (eight males, median age 78 years (68 to 89) all had COPD median Karnofsky 70 (50 to 80) six were on long-term home oxygen. Ten people completed day four. One person withdrew because of unsteadiness on day four. Five participants reached the 15% reduction, but only three went on to the extension study, all completing without toxicity. This study was safe, feasible and there appears to be a group who derive benefits comparable to titrated opioids. Given the widespread use of benzodiazepines for the symptomatic treatment of chronic refractory breathlessness and its poor evidence base, there is justification for a definitive phase III study.
Publisher: Elsevier BV
Date: 2018
Publisher: Georg Thieme Verlag KG
Date: 17-09-2022
DOI: 10.1055/A-1946-5592
Abstract: Early palliative and supportive care referral is the standard of care for many malignancies. This paradigm results in improvements in patients' symptoms and quality of life and decreases the costs of medical care and unnecessary procedures. Leading oncology guidelines have recommended the integration of early referral to palliative and supportive services to care pathways for advanced malignancies. Currently, early referral to palliative care within the hepatocellular carcinoma (HCC) population is not utilized, with gastroenterology guidelines recommending referral of patients with Barcelona Clinic Liver Cancer stage D to these services. This review addresses this topic through analysis of the existing data within the oncology field as well as literature surrounding palliative care intervention in HCC. Early palliative and supportive care in HCC and its impact on patients, caregivers, and health services allow clinicians and researchers to identify management options that improve outcomes within existing service provisions.
Publisher: Scientific Scholar
Date: 12-08-2021
DOI: 10.25259/IJPC_415_20
Abstract: The article collates the narratives of experiences of the international faculty who mentored the quality improvement teams from India since 2017.
Publisher: SAGE Publications
Date: 26-03-2010
Abstract: Definitive risk factors for constipation in palliative care remain poorly defined. A retrospective analysis of 211 admissions to a palliative care unit was undertaken, with the main aim being to identify some factors, which influence laxative prescription. On univariate analysis, significant unadjusted associations were found between two or more prescribed laxatives and a diagnosis of malignancy, morphine equivalent dose, type of illness phase and the subsequent phase type, length of phase, anticholinergic load imposed by medications, symptom severity and functional status. Multiple ordinal logistic regressions revealed the prescription of one laxative to be significantly associated with oral morphine-equivalent dose, total anticholinergic load (odds ratio [OR] 1.4, 95% CI = 1.0—2.0), disease progression to terminal phase and death (OR 0.1, 95% CI = 0.0—0.3), and length of phase (OR 1.1, 95% CI = 1.0—1.2). Similar results were obtained for the prescription of two or more laxatives. Two additional measures of function, toileting (OR 3.6, 95% CI = 1.6—8.2) and transfer (OR 0.4 95% CI = 0.2—0.9), also became significant. Total anticholinergic load was significantly associated with the prescription of a single laxative (OR 1.4, 95% CI = 1.0—2.0) and two or more laxatives (OR 1.8, 95% CI = 1.3—2.5) for each unit increase in anticholinergic load. Opioids and in particular opioids prescribed at higher doses, the total anticholinergic load associated with prescribed medications, the degree of impaired physical function of a person, their length of stay in a palliative care unit and their proximity to death were all strongly related to the prescription of laxatives.
Publisher: Elsevier BV
Date: 06-2014
Publisher: Wiley
Date: 10-08-2020
DOI: 10.1111/AJCO.13388
Publisher: Cambridge University Press (CUP)
Date: 25-05-2018
DOI: 10.1017/S1041610218000741
Abstract: Recent research has demonstrated the challenges to self-identity associated with dementia, and the importance of maintaining involvement in decision-making while adjusting to changes in role and lifestyle. This study aimed to understand the lived experiences of couples living with dementia, with respect to healthcare, lifestyle, and “everyday” decision-making. Semi-structured qualitative interviews using Interpretative Phenomenological Analysis as the methodological approach. Community and residential care settings in Australia. Twenty eight participants who self-identified as being in a close and continuing relationship ( N = 13 people with dementia, N = 15 spouse partners). Nine couples were interviewed together. Participants described a spectrum of decision-making approaches (independent, joint, supported, and substituted), with these approaches often intertwining in everyday life. Couples’ approaches to decision-making were influenced by “decisional,” “in idual,” “relational,” and “external” factors. The overarching themes of “knowing and being known,” “maintaining and re-defining couplehood” and “relational decision-making,” are used to interpret these experiences. The spousal relationship provided an important context for decision-making, with couples expressing a history and ongoing preference for joint decision-making, as an integral part of their experience of couplehood. However, the progressive impairments associated with dementia presented challenges to maintaining joint decision-making and mutuality in the relationship. This study illustrates relational perspectives on decision-making in couples with dementia. Post-diagnostic support, education resources, proactive dyadic interventions, and assistance for spouse care partners may facilitate more productive attempts at joint decision-making by couples living with dementia.
Publisher: Wiley
Date: 12-08-2018
DOI: 10.1111/BCP.13671
Publisher: Mary Ann Liebert Inc
Date: 11-2013
Publisher: Public Library of Science (PLoS)
Date: 07-08-2017
Publisher: Elsevier BV
Date: 11-2014
DOI: 10.1016/J.JPAINSYMMAN.2014.01.008
Abstract: Delirium is underrecognized by nurses, including those working in palliative care settings where the syndrome occurs frequently. Identifying contextual factors that support and/or hinder palliative care nurses' delirium recognition and assessment capabilities is crucial, to inform development of clinical practice and systems aimed at improving patients' delirium outcomes. The aim of the study was to identify nurses' perceptions of the barriers and enablers to recognizing and assessing delirium symptoms in palliative care inpatient settings. A series of semistructured interviews, guided by critical incident technique, were conducted with nurses working in Australian palliative care inpatient settings. A hypoactive delirium vignette prompted participants' recall of delirium and identification of the perceived factors (barriers and enablers) that impacted on their delirium recognition and assessment capabilities. Thematic content analysis was used to analyze the qualitative data. Thirty participants from nine palliative care services provided insights into the barriers and enablers of delirium recognition and assessment in the inpatient setting that were categorized as patient and family, health professional, and system level factors. Analysis revealed five themes, each reflecting both identified barriers and current and/or potential enablers: 1) value in listening to patients and engaging families, 2) assessment is integrated with care delivery, 3) respecting and integrating nurses' observations, 4) addressing nurses' delirium knowledge needs, and 5) integrating delirium recognition and assessment processes. Supporting the development of palliative care nursing delirium recognition and assessment practice requires attending to a range of barriers and enablers at the patient and family, health professional, and system levels.
Publisher: Springer Science and Business Media LLC
Date: 10-01-2019
Publisher: Springer Science and Business Media LLC
Date: 15-01-2022
DOI: 10.1007/S41999-021-00586-1
Abstract: Delirium leads to poor outcomes for patients and careers and has negative impacts on staff and service provision. Cancer rates in elderly populations are increasing and frequently, cancer diagnoses are a co-morbidity in the context of frailty. Data relating to the epidemiology of delirium in hospitalised cancer patients are limited. With the overarching purpose of improving delirium detection and reducing the morbidity and mortality of delirium in cancer patients, we reviewed the epidemiological data and approach to delirium detection in hospitalised, adult oncology patients. MEDLINE, EMBASE, CINAHL, PsycINFO, and SCOPUS databases were searched from January 1996 to August 2017. Key concepts were delirium, cancer, inpatient oncology and delirium screening/detection. Of 896 unique studies identified 91 met full-text review criteria. Of 12 eligible studies, four applied recommended case ascertainment methods to all patients, three used delirium screening tools alone or with case ascertainment tools sub-optimally applied, four used tools not recommended for delirium screening or case ascertainment, one used the Confusion Assessment Method with insufficient information to determine if it met case ascertainment status. Two studies presented delirium incidence rates: 7.8%, and 17% respectively. Prevalence rates ranged from 18–33% for general medical or oncology wards 42–58% for Acute Palliative Care Units (APCU) and for older cancer patients: 22% and 57%. Three studies reported reversibility 26% and 49% respectively (APCUs) and 30% (older patients with cancer). Six studies had a low risk of bias according to QUADAS-2 criteria all studies in the APCU setting were rated at higher risk of bias. Tool selection, study flow and recruitment bias reduced study quality. The knowledge base for improved interventions and clinical care for adults with cancer and delirium is limited by the low number of studies. A clear distinction between screening tools and diagnostic tools is required to provide an improved understanding of the rates of delirium and its reversibility in this population.
Publisher: Springer Science and Business Media LLC
Date: 20-04-2021
DOI: 10.1007/S40271-021-00517-Z
Abstract: Most health care systems are facing the challenge of providing health services to support the increasing numbers of older people with chronic life-limiting conditions at the end of life. Many policies focus primarily on increasing the proportion of deaths at home. This study aims to investigate preferences for care throughout the latter stages of a life-limiting illness, particularly the importance of location of care, location of death, and the use of life-sustaining measures. It focuses on preferences for the care of an older person with advanced cancer in the last 3 weeks of life. A survey using discrete choice experiment (DCE) methods was completed online by a general population s le of 1548 Australians aged 45 years and over. The experiment included 12 attributes, and each respondent completed 11 choice sets. Analysis was by a mixed logit model and latent class analysis (LCA). The most important attributes influencing care preferences were cost, patient anxiety, pain control, and carer stress (relative importance scores 0.21, 0.19, 0.14, and 0.14, respectively), with less importance given to place of care and place of death (relative importance scores 0.03 and 0.01). The model predicted that 42% would consider receiving most care in hospital better than at home (58%) holding the levels of other attributes constant across the alternatives, while 42% would consider death in hospital better than at home (58%). Three population segments with different preferences were identified by the LCA, the largest (46.5%) prioritised how the patient and carer felt as well as the pain control achieved, the next largest (28.1%) prioritised cost, and the smallest segment (25.4%) prioritised a single room when an inpatient. This study shows that investment in services to support people at the end of life would be better targeted toward programmes that improve patient and carer wellbeing irrespective of the location of care and death.
Publisher: BMJ
Date: 12-02-2021
DOI: 10.1136/BMJSPCARE-2020-002294
Abstract: In December 2013, a partnership between five local health districts and a non-governmental organisation implemented the Palliative Care Home Support Packages (PEACH) Program. The PEACH Program aims to support palliative care clients in their last days of life at their own home. This study sought to evaluate the quality of care delivered by the service from the perspective of clients’ primary carers. A letter was sent to carers of clients 6–10 weeks after the client’s death, inviting them to participate in an anonymous survey. The survey measured the level of satisfaction on various aspects of the service using FAMCARE and Likert scales, and invited for comments about the care received and suggestions for improvement. Out of 17 aspects of care provided by the PEACH Program, 13 were scored with ‘exceptional’ or ‘acceptable performance’. The highest satisfaction was observed in meeting clients’ physical needs and providing pain relief. The most dissatisfaction was observed in addressing spiritual matters, family conferences and information about treatment side effects. Ninety-five per cent of responses were either ‘satisfied’ or ‘very satisfied’ with the overall care provided at home during the last week of the client’s life. The results of this research provide further evidence to the field of what constitutes a good home death and the support mechanisms required to enable this. The results also have strong implications on how local services provided by the PEACH Program are delivered in the future.
Publisher: SAGE Publications
Date: 04-02-2020
Abstract: People with dementia requiring palliative care have multiple needs, which are lified in long-term care settings. The European Association for Palliative Care White Paper offers recommendations for optimal palliative care in dementia integral for this population, providing useful guidance to inform interventions addressing their specific needs. The aim of this study is to describe the components of palliative care interventions for people with dementia in long-term care focusing on shared decision-making and examine their alignment to the European Association for Palliative Care domains of care. Systematic review with narrative synthesis (PROSPERO ID: CRD42018095649). Four databases (MEDLINE, CINAHL, PsycINFO and CENTRAL) were searched (earliest records – July 2019) for peer-reviewed articles and protocols in English, reporting on palliative care interventions for people with dementia in long-term care, addressing European Association for Palliative Care Domains 2 (person-centred) or 3 (setting care goals) and ⩾1 other domain. Fifty-one papers were included, reporting on 32 studies. For each domain (1–10), there were interventions found aiming to address its goal, although no single intervention addressed all domains. Domain 7 (symptom management n = 19), 6 (avoiding overly aggressive treatment n = 18) and 10 (education n = 17) were the most commonly addressed Domain 5 (prognostication n = 7) and 4 (continuity of care n = 2) were the least addressed. Almost all domains were addressed across all interventions currently offered for this population to various degrees, but not within a singular intervention. Future research optimally needs to be theory driven when developing dementia-specific interventions at the end of life, with the European Association for Palliative Care domains serving as a foundation to inform the best care for this population.
Publisher: Elsevier BV
Date: 12-2019
Publisher: American Medical Association (AMA)
Date: 04-2021
DOI: 10.1001/JAMAONCOL.2020.6736
Abstract: Older adults with cancer are at risk of overtreatment or undertreatment when decision-making is based solely on chronological age. Although a geriatric assessment is recommended to inform care, the time and expertise required limit its feasibility for all patients. Screening tools offer the potential to identify those who will benefit most from a geriatric assessment. Consensus about the optimal tool to use is lacking. To appraise the evidence on screening tools used for older adults with cancer and identify an optimal screening tool for older adults with cancer who may benefit from geriatric assessment. Systematic review of 4 databases (MEDLINE, Embase, CINAHL [Cumulative Index to Nursing and Allied Health Literature], and PubMed) with narrative synthesis from January 1, 2000, to March 14, 2019. Studies reporting on the diagnostic accuracy and use of validated screening tools to identify older adults with cancer who need a geriatric assessment were eligible for inclusion. Data were analyzed from March 14, 2019, to March 23, 2020. Seventeen unique studies were included, reporting on the use of 12 screening tools. Most studies were prospective cohort studies (n = 11) with only 1 randomized clinical trial. Not all studies reported time taken to administer the screening tools. The Geriatric-8 (G8) (n = 12) and the Vulnerable Elders Survey-13 (VES-13) (n = 9) were the most frequently evaluated screening tools. The G8 scored better in sensitivity and the VES-13 in specificity. Other screening tools evaluated include the Groningen Frailty Index, abbreviated comprehensive geriatric assessment, and Physical Performance Test in 2 studies each. All other screening tools were evaluated in 1 study each. To date, the G8 and VES-13 have the most evidence to recommend their use to inform the need for geriatric assessment. When choosing a screening tool, clinicians will need to weigh the tradeoffs between sensitivity and specificity. Future research needs to further validate or improve current screening tools and explore other factors that can influence their use, such as ease of use and resourcing.
Publisher: Wiley
Date: 11-2016
DOI: 10.1111/IMJ.13224
Abstract: Australian clinical trials are planned to evaluate medicinal cannabis in a range of clinical contexts. To explore the preferences, attitudes and beliefs of patients eligible and willing to consider participation in a clinical trial of medicinal cannabis for poor appetite and appetite-related symptoms from advanced cancer. A cross-sectional anonymous survey was administered from July to December 2015 online and in eight adult outpatient palliative care and/or cancer services. Respondents were eligible if they were ≥18 years, had advanced cancer and poor appetite/taste problems/weight loss and might consider participating in a medicinal cannabis trial. Survey items focused on medicinal rather than recreational cannabis use and did not specify botanical or pharmaceutical products. Items asked about previous medicinal cannabis use and preferences for delivery route and invited comments and concerns. There were 204 survey respondents, of whom 26 (13%) reported prior medicinal cannabis use. Tablets/capsules were the preferred delivery mode (n = 144, 71%), followed by mouth spray (n = 84, 42%) and vaporiser (n = 83, 41%). Explanations for preferences (n = 134) most commonly cited convenience (n = 66 49%). A total of 82% (n = 168) of respondents indicated that they had no trial-related concerns, but a small number volunteered concerns about adverse effects (n = 14) or wanted more information/advice (n = 8). Six respondents volunteered a belief that cannabis might cure cancer, while two wanted assurance of efficacy before participating in a trial. Justification of modes other than tablets/capsules and variable understanding about cannabis and trials will need addressing in trial-related information to optimise recruitment and ensure that consent is properly informed.
Publisher: European Respiratory Society
Date: 09-2016
Publisher: European Respiratory Society (ERS)
Date: 2019
Publisher: CSIRO Publishing
Date: 2019
DOI: 10.1071/AH17289
Abstract: Objective The aim of the present study was to compare the health status of South Australians with recent experience of caring for an adult with chronic disease with non-carers drawn from the same population. Methods Data were collected via the South Australian Health Omnibus, an annual population-based, cross-sectional survey. Respondents were asked whether they had provided care or support in the last 5 years to someone with cancer, heart disease, respiratory disease, mental illness, neurological disease or dementia. Health status was measured using the Short Form-12 version 1 (SF-12) physical and mental component scale summary scores (PCS and MCS respectively), with poor health status defined as ≥0.5 standard deviation below the normative mean. Logistic regression explored characteristics associated with poor health status. Results Of 3033 respondents analysed, 987 (32.5%) reported caring experience. Poor PCS and MCS were associated with carer status, lower-than-degree-level education, employment status other than employed and annual household income less than A$60000. Being Australian born was a protective factor for PCS, whereas factors protective for MCS were being married or in a de facto relationship and age ≥65 years. Conclusions Providing care or support in the last 5 years is independently associated with poorer health status, but not with the magnitude found in studies of current carers. Future research should explore health status recovery after completion of the caring role, and investigate whether relationships between health and socioeconomic status differ for carers versus non-carers. What is known about the topic? Population-based survey studies in Australia and overseas have consistently found that informal carers have worse health status than non-carers. What does this paper add? Including recent as well as current carers in a population-based s le was associated with less effect on health status compared with studies focused on current carers only. This finding is consistent with the possibility that health status recovers during the 5 years after caring. What are the implications for practitioners? Support for Australian carers is warranted to ensure their continuing contributions to society and return to productivity after their caring role is completed.
Publisher: SAGE Publications
Date: 27-02-2009
Abstract: Although there is an understandable emphasis on the side effects of in idual medications, the cumulative effects of medications have received little attention in palliative care prescribing. Anticholinergic load reflects a cumulative effect of medications that may account for several symptoms and adverse health outcomes frequently encountered in palliative care. A secondary analysis of 304 participants in a randomised controlled trial had their cholinergic load calculated using the Clinician-Rated Anticholinergic Scale (modified version) longitudinally as death approached from medication data collected prospectively by study nurses on each visit. Mean time from referral to death was 107 days, and mean 4.8 visits were conducted in which data were collected. Relationships to key factors were explored. Data showed that anticholinergic load rose as death approached because of increasing use of medications for symptom control. Symptoms significantly associated with increasing anticholinergic load included dry mouth and difficulty concentrating ( P 0.05). There were also significant associations with increasing anticholinergic load and decreasing functional status (Australia-modified Karnofsky Performance Scale and quality of life ( P 0.05). This study has documented in detail the longitudinal anticholinergic load associated with medications used in a palliative care population between referral and death, demonstrating the biggest contributor to anticholinergic load in a palliative care population is from symptom-specific medications, which increased as death approached.
Publisher: Springer Science and Business Media LLC
Date: 18-01-2021
DOI: 10.1186/S12885-020-07504-X
Abstract: A serious syndrome for cancer in-patients, delirium risk increases with age and medical acuity. Screening tools exist but detection is frequently delayed or missed. We test the ‘Single Question in Delirium’ (SQiD), in comparison to psychiatrist clinical interview. Inpatients in two comprehensive cancer centres were prospectively screened. Clinical staff asked informants to respond to the SQiD: “Do you feel that [patient’s name] has been more confused lately?”. The primary endpoint was negative predictive value (NPV) of the SQiD versus psychiatrist diagnosis (Diagnostic and Statistics Manual criteria). Secondary endpoints included: NPV of the Confusion Assessment Method (CAM), sensitivity, specificity and Cohen’s Kappa coefficient. Between May 2012 and July 2015, the SQiD plus CAM was applied to 122 patients 73 had the SQiD and psychiatrist interview. Median age was 65 yrs. (interquartile range 54–74), 46% were female median length of hospital stay was 12 days (5–18 days). Major cancer types were lung (19%), gastric or other upper GI (15%) and breast (14%). 70% of participants had stage 4 cancer. Diagnostic values were similar between the SQiD (NPV = 74, 95% CI 67–81 kappa = 0.32) and CAM (NPV = 72, 95% CI 67–77, kappa = 0.32), compared with psychiatrist interview. Overall the CAM identified only a small number of delirious cases but all were true positives. The specificity of the SQiD was 87% (74–95) The SQiD had higher sensitivity than CAM (44% [95% CI 41–80] vs 26% [10–48]). The SQiD, administered by bedside clinical staff, was feasible and its psychometric properties are now better understood. The SQiD can contribute to delirium detection and clinical care for hospitalised cancer patients.
Publisher: Elsevier BV
Date: 08-2014
DOI: 10.1016/J.JPAINSYMMAN.2014.05.009
Abstract: In end-of-life care, delirium is often not recognized and poses unique management challenges, especially in the case of refractory delirium in the terminal phase. To review delirium in the terminal phase context, specifically in relation to recognition issues the decision-making processes and management strategies regarding its reversibility the potential refractoriness of delirium to symptomatic treatment and the role of sedation in refractory delirium. We combined multidisciplinary input from delirium researchers and knowledge users at an international delirium study planning meeting and relevant electronic database literature searches (Ovid Medline, Embase, PsycINFO, and CINAHL) to inform this narrative review. The overall management strategy for delirium at the end of life is directed by the patient's prognosis in association with the patient's goals of care. As symptoms of delirium are often refractory in the terminal phase, especially in the case of agitated delirium, the judicious use of palliative sedation is frequently required. However, there remains a lack of high-level evidence for the management of delirium in the terminal phase, including the role of antipsychotics and optimal sedation strategies. For the family and health-care staff, clear communication, education, and emotional support are vital components to assist with decision making and direct the treatment care plan. Further research on the effectiveness of delirium management strategies in the terminal phase for patients and their families is required. Further validation of assessment tools for diagnostic screening and severity measurement is needed in this patient population.
Publisher: Wiley
Date: 09-06-2021
DOI: 10.1111/JOCN.15885
Abstract: Older adults living with dementia frequently transition between healthcare settings. Care transitions increase vulnerability and risk of iatrogenic harm. To examine the quality of transitional care arrangements within discharge documentation for older people living with dementia. Secondary analysis of cohort study data. A secondary analysis of the IDEAL Study [ACTRN12612001164886] discharge documents, following the STROBE guidelines. Participants had a confirmed diagnosis of dementia and were discharged from hospital to a nursing home. An audit tool was used to extract the data. This was developed through a synthesis of existing tools and finalised by an expert panel. The analysis assessed the quality of discharge documentation, in the context of transitional care needs, and presented results using descriptive statistics. Functional ability physical health cognition and mental health medications and socio environmental factors were assessed. Sixty participants were included in analyses, and half were male (52%), with a total participant mean age of 83 (SD 8.7) years. There was wide variability in the quality of core discharge information, ranging from excellent (37%), adequate (43%) to poor (20%). A sub‐group of these core discharge documentation elements that detailed the participants transitional care needs were rated as follows: excellent (17%), adequate (46%) and poor (37%). Discharge documentation fails to meet needs of people living with dementia. Improving the quality of discharge documentation for people living with dementia transitioning from hospital to nursing home is critical to provide safe and quality care. There is a need for safe, timely, accurate and comprehensive discharge information to ensure the safety of people living with dementia and prevent adverse harm.
Publisher: SAGE Publications
Date: 27-08-2021
DOI: 10.1177/02692163211040186
Abstract: Trials of interventions for delirium in various patient populations report disparate outcomes and measures but little is known about those used in palliative care trials. A core outcome set promotes consistency of outcome selection and measurement. To inform core outcome set development by examining outcomes, their definitions, measures and time-points in published palliative care studies of delirium prevention or treatment delirium interventions. Prospectively registered systematic review adhering to Preferred Reporting Items for Systematic Reviews and Meta-Analyses. We searched six electronic databases (1980-November 2020) for original studies, three for relevant reviews and the International Clinical Trials Registry Platform for unpublished studies and ongoing trials. We included randomised, quasi-randomised and non-randomised intervention studies of pharmacological and non-pharmacological delirium prevention and/or treatment interventions. From 13/3244 studies (2863 adult participants), we identified 9 delirium-specific and 13 non-delirium specific outcome domains within eight Core Outcome Measures in Effectiveness Trials (COMET) taxonomy categories. There were multiple and varied outcomes and time points in each domain. The commonest delirium specific outcome was delirium severity ( The review identified few delirium interventions with heterogeneity in outcomes, their definition and measurement, highlighting the need for a uniform approach. Findings will inform the next stage to develop consensus for a core outcome set to inform delirium interventional palliative care research.
Publisher: Cambridge University Press (CUP)
Date: 27-06-2017
DOI: 10.1017/S1041610217000977
Abstract: Palliative care for nursing home residents with advanced dementia is often sub-optimal due to poor communication and limited care planning. In a cluster randomized controlled trial, registered nurses (RNs) from 10 nursing homes were trained and funded to work as Palliative Care Planning Coordinators (PCPCs) to organize family case conferences and mentor staff. This qualitative sub-study aimed to explore PCPC and health professional perceptions of the benefits of facilitated case conferencing and identify factors influencing implementation. Semi-structured interviews were conducted with the RNs in the PCPC role, other members of nursing home staff, and physicians who participated in case conferences. Analysis was conducted by two researchers using a thematic framework approach. Interviews were conducted with 11 PCPCs, 18 other nurses, eight allied health workers, and three physicians. Perceived benefits of facilitated case conferencing included better communication between staff and families, greater multi-disciplinary involvement in case conferences and care planning, and improved staff attitudes and capabilities for dementia palliative care. Key factors influencing implementation included: staffing levels and time support from management, staff and physicians and positive family feedback. The facilitated approach explored in this study addressed known barriers to case conferencing. However, current business models in the sector make it difficult for case conferencing to receive the required levels of nursing qualification, training, and time. A collaborative nursing home culture and ongoing relationships with health professionals are also prerequisites for success. Further studies should document resident and family perceptions to harness consumer advocacy.
Publisher: BMJ
Date: 11-2016
Publisher: SAGE Publications
Date: 28-06-2019
Abstract: Delirium is common, distressing, serious and under-researched in specialist palliative care settings. To examine whether people requiring palliative care were included in non-pharmacological delirium intervention studies in inpatient settings, how they were characterised and what their outcomes were. Systematic review (PROSPERO 2017 CRD42017062178). Systematic search in March 2017 for non-pharmacological delirium intervention studies in adult inpatients. Database search terms were ‘delirium’, ‘hospitalisation’, ‘inpatient’, ‘palliative care’, ‘hospice’, ‘critical care’ and ‘geriatrics’. Scottish Intercollegiate Guidelines Network methodological checklists guided risk of bias assessment. The 29 included studies were conducted between 1994 and 2015 in erse settings in 15 countries (9136 participants, mean age = 76.5 years ( SD = 8.1), 56% women). Most studies tested multicomponent interventions ( n = 26) to prevent delirium ( n = 19). Three-quarters of the 29 included studies ( n = 22) excluded various groups of people requiring palliative care however, inclusion criteria, participant diagnoses, illness severity and mortality indicated their presence in almost all studies ( n = 26). Of these, 21 studies did not characterise participants requiring palliative care or report their specific outcomes (72%), four reported outcomes for older people with frailty, dementia, cancer and comorbidities, and one was explicitly focused on people receiving palliative care. Study heterogeneity and limitations precluded definitive determination of intervention effectiveness and only allowed interpretations of feasibility for people requiring palliative care. Acceptability outcomes (intervention adverse events and patients’ subjective experience) were rarely reported overall. Non-pharmacological delirium interventions have frequently excluded and under-characterised people requiring palliative care and infrequently reported their outcomes.
Publisher: Cambridge University Press (CUP)
Date: 19-10-2013
DOI: 10.1017/S1478951512000260
Abstract: This study aimed to investigate health-related quality of life of palliative care (PC) clients and their caregivers, at baseline and follow-up, following a referral to a community PC service. Quality of life of clients and their caregivers was respectively measured using the McGill Quality of Life instrument (MQoL) and the Caregiver Quality of Life Cancer Index (CQoLC) instruments. Participants were recruited from June 8 to October 27, 2006. This study was undertaken in one zone of an Area Health Service in New South Wales, which has a erse socioeconomic population. The zone covers an area of 6237 km 2 and is ided into five sectors, each with a PC service, all of which participated in this study. Data were obtained from 49 clients and 43 caregivers at baseline, and 22 clients and 12 caregivers at 8 week follow-up. Twenty-one participants died and six moved out of the area during the study. At baseline, clients reported a low mean score for physical symptoms (3.3 ± 1.9) and a high score for support (8.7 ± 1.0). Caregivers scored a total CQoLC of 63.9 ± 21.4 and clients had a total QOL of 6.1 ± 1.3. At follow up, matched data for 22 clients and 13 caregivers demonstrated no statistical differences in quality of life. This study has provided evidence that health-related quality of life questionnaires show lower scores for physical health and higher scores for support, which can directly inform specific interventions targeted at the physical and support domains.
Publisher: BMJ
Date: 07-2017
Publisher: Elsevier BV
Date: 08-2014
DOI: 10.1016/J.JPAINSYMMAN.2013.10.024
Abstract: Delirium is a common, distressing neuropsychiatric complication for patients in palliative care settings, where the need to minimize burden yet accurately assess delirium is hugely challenging. This review focused on the optimal clinical and research application of delirium assessment tools and methods in palliative care settings. In addition to multidisciplinary input from delirium researchers and other relevant stakeholders at an international meeting, we searched PubMed (1990-2012) and relevant reference lists to identify delirium assessment tools used either exclusively or partly in the context of palliative care. Of the 26 delirium scales identified, we selected six for in-depth review: three screening tools, two severity measures, and one research tool for neuropsychological assessment of delirium. These tools differed regarding intended use, ease of use, training requirements, psychometric properties, and validation in or suitability for palliative care populations. The Nursing Delirium Screening Scale, Single Question in Delirium, or Confusion Assessment Method, ideally with a brief attention test, can effectively screen for delirium. Favoring inclusivity, use of Diagnostic and Statistical Manual of Mental Disorders-IV criteria gives the best results for delirium diagnosis. The Revised Delirium Rating Scale and the Memorial Delirium Assessment Scale are the best available options for monitoring severity, and the Cognitive Test for Delirium provides detailed neuropsychological assessment for research purposes. Given the unique characteristics of patients in palliative care settings, further contextually sensitive studies of delirium assessment are required in this population.
Publisher: Springer Science and Business Media LLC
Date: 21-11-2015
Publisher: ACM
Date: 19-04-2023
Publisher: American Medical Association (AMA)
Date: 2017
DOI: 10.1001/JAMAINTERNMED.2016.7491
Abstract: Antipsychotics are widely used for distressing symptoms of delirium, but efficacy has not been established in placebo-controlled trials in palliative care. To determine efficacy of risperidone or haloperidol relative to placebo in relieving target symptoms of delirium associated with distress among patients receiving palliative care. A double-blind, parallel-arm, dose-titrated randomized clinical trial was conducted at 11 Australian inpatient hospice or hospital palliative care services between August 13, 2008, and April 2, 2014, among participants with life-limiting illness, delirium, and a delirium symptoms score (sum of Nursing Delirium Screening Scale behavioral, communication, and perceptual items) of 1 or more. Age-adjusted titrated doses of oral risperidone, haloperidol, or placebo solution were administered every 12 hours for 72 hours, based on symptoms of delirium. Patients also received supportive care, in idualized treatment of delirium precipitants, and subcutaneous midazolam hydrochloride as required for severe distress or safety. Improvement in mean group difference of delirium symptom score (severity range, 0-6) between baseline and day 3. Five a priori secondary outcomes: delirium severity, midazolam use, extrapyramidal effects, sedation, and survival. Two hundred forty-seven participants (mean [SD] age, 74.9 [9.8] years 85 women [34.4%] 218 with cancer [88.3%]) were included in intention-to-treat analysis (82 receiving risperidone, 81 receiving haloperidol, and 84 receiving placebo). In the primary intention-to-treat analysis, participants in the risperidone arm had delirium symptom scores that were significantly higher than those among participants in the placebo arm (on average 0.48 Units higher 95% CI, 0.09-0.86 P = .02) at study end. Similarly, for those in the haloperidol arm, delirium symptom scores were on average 0.24 Units higher (95% CI, 0.06-0.42 P = .009) than in the placebo arm. Compared with placebo, patients in both active arms had more extrapyramidal effects (risperidone, 0.73 95% CI, 0.09-1.37 P = .03 and haloperidol, 0.79 95% CI, 0.17-1.41 P = .01). Participants in the placebo group had better overall survival than those receiving haloperidol (hazard ratio, 1.73 95% CI, 1.20-2.50 P = .003), but this was not significant for placebo vs risperidone (hazard ratio, 1.29 95% CI, 0.91-1.84 P = .14). In patients receiving palliative care, in idualized management of delirium precipitants and supportive strategies result in lower scores and shorter duration of target distressing delirium symptoms than when risperidone or haloperidol are added. anzctr.org.au Identifier: ACTRN12607000562471.
Publisher: Public Library of Science (PLoS)
Date: 02-12-2209
DOI: 10.1371/JOURNAL.PONE.0285850
Abstract: Anorexia is experienced by most people with lung cancer during the course of their disease and treatment. Anorexia reduces response to chemotherapy and the ability of patients to cope with, and complete their treatment leading to greater morbidity, poorer prognosis and outcomes. Despite the significant importance of cancer-related anorexia, current therapies are limited, have marginal benefits and unwarranted side effects. In this multi-site, randomised, double blind, placebo controlled, phase II trial, participants will be randomly assigned (1:1) to receive once-daily oral dosing of 100mg of anamorelin HCl or matched placebo for 12 weeks. Participants can then opt into an extension phase to receive blinded intervention for another 12 weeks (weeks 13–24) at the same dose and frequency. Adults (≥18 years) with small cell lung cancer (SCLC) newly diagnosed with planned systemic therapy OR with first recurrence of disease following a documented disease-free interval ≥6 months, AND with anorexia (i.e., ≤ 37 points on the 12-item Functional Assessment of Anorexia Cachexia Treatment (FAACT A/CS) scale) will be invited to participate. Primary outcomes are safety, desirability and feasibility outcomes related to participant recruitment, adherence to interventions, and completion of study tools to inform the design of a robust Phase III effectiveness trial. Secondary outcomes are the effects of study interventions on body weight and composition, functional status, nutritional intake, biochemistry, fatigue, harms, survival and quality of life. Primary and secondary efficacy analysis will be conducted at 12 weeks. Additional exploratory efficacy and safety analyses will also be conducted at 24 weeks to collect data over longer treatment duration. The feasibility of economic evaluations in Phase III trial will be assessed, including the indicative costs and benefits of anamorelin for SCLC to the healthcare system and society, the choice of methods for data collection and the future evaluation design. Trial registration. The trial has been registered with the Australian New Zealand Clinical Trials Registry [ACTRN12622000129785] and approved by the South Western Sydney Local Health District Human Research Ethics Committee [2021/ETH11339]. rial-detail/ACTRN12622000129785 .
Publisher: BMJ
Date: 07-2015
Abstract: Implications for practice and research: Peanut or tree nut avoidance during pregnancy is not recommended for non-allergic mothers. Maternal nut consumption does not appear to increase the risk of nut allergy in offspring and may even be protective. Further research is required to clarify the role of maternal nut consumption during pregnancy and lactation research should consider potential differential effects of the genetic risk of peanut allergy in children.
Publisher: Wiley
Date: 07-08-2015
DOI: 10.1111/JOCN.12925
Abstract: To explore nurse perceptions of the feasibility of integrating the Nursing Delirium Screening Scale into practice within the inpatient palliative care setting. Delirium occurs frequently in palliative care inpatient populations, yet is under-recognised. Exploring feasibility of delirium screening tools in this setting can provide insights into how recognition can be improved. This was a qualitative study using a focus group methodology. Four semi-structured focus groups were conducted with 21 nurses working in two Australian palliative care units. Focus groups were digitally recorded and transcribed verbatim. Thematic content analysis was used to analyse the data. Three major themes were identified: (1) Delirium screening using the Nursing Delirium Screening Scale is feasible, but then what? (2) Nuances, ambiguity and clinical complexity and (3) Implementing structured processes requires firmer foundations. Themes describe how nurses perceived the Nursing Delirium Screening Scale to be an easy and brief screening tool which raised their awareness of delirium. They were largely willing to adopt it into practice, yet had uncertainty and misunderstandings of the tool specifically and delirium screening generally, application in a palliative care context, interventions for delirium and impact of screening on medical practice. The Nursing Delirium Screening Scale is feasible for use in a palliative care inpatient setting, but requires investigation of its psychometric properties before routine use in this patient population. Nurses require understanding of delirium, tailored guidance and a united approach with doctors to support their effective use of a delirium screening tool in the palliative care unit. Delirium practice change in this setting will also require nurses to become more active leaders and collaborators within their interdisciplinary teams.
Publisher: Wiley
Date: 21-04-2016
DOI: 10.1111/AJAG.12330
Publisher: SAGE Publications
Date: 31-03-2021
Publisher: Oxford University Press (OUP)
Date: 23-07-2020
Publisher: Elsevier BV
Date: 09-2014
DOI: 10.1016/J.JPAINSYMMAN.2013.10.027
Abstract: Advanced cancer patients typically experience multiple symptoms, which may influence patient outcomes synergistically. The composition of these symptom clusters (SCs) differs depending on various clinical variables and the timing and method of their assessment. The objective of this systematic review was to examine the composition, longitudinal stability, and consistency across methodologies of common SCs, as well as their common predictors and outcomes. A search of MEDLINE, CINAHL, Embase, Web of Science, and PsycINFO was conducted using variants of symptom clusters, cancer, and palliative care. Thirty-three articles were identified and reviewed. Many SCs were identified, with four common groupings being anxiety-depression, nausea-vomiting, nausea-appetite loss, and fatigue-dyspnea-drowsiness-pain. SCs in most cases were not stable longitudinally. The various statistical methods used (most commonly principal component analysis, exploratory factor analysis, and hierarchical cluster analysis) tended to reveal different SCs. Different measurement tools were used in different studies, each containing a different array of symptoms. The predictors and outcomes of SCs were also inconsistent across studies. No studies of patient experiences of SCs were identified. Although the articles reviewed revealed four groups of symptoms that tended to cluster, there is limited consistency in the way in which SCs and variables associated with them are identified. This is largely due to a lack of agreement about a robust, clinically relevant definition of SCs. Future research should focus on patients' subjective experience of SCs to inform a clinically relevant definition of SCs and how they are managed over time.
Publisher: Wiley
Date: 06-2012
Publisher: Cambridge University Press (CUP)
Date: 23-04-2019
DOI: 10.1017/S1478951518000792
Abstract: The majority of self-management interventions are designed with a narrow focus on patient skills and fail to consider their potential as “catalysts” for improving care delivery. A project was undertaken to develop a patient self-management resource to support evidence-based, person-centered care for cancer pain and overcome barriers at the levels of the patient, provider, and health system. The project used a mixed-method design with concurrent triangulation, including the following: a national online survey of current practice two systematic reviews of cancer pain needs and education a desktop review of online patient pain diaries and other related resources consultation with stakeholders and interviews with patients regarding acceptability and usefulness of a draft resource. Findings suggested that an optimal self-management resource should encourage pain reporting, build patients’ sense of control, and support communication with providers and coordination between services. Each of these characteristics was identified as important in overcoming established barriers to cancer pain care. A pain self-management resource was developed to include: (1) a template for setting specific, measureable, achievable, relevant and time-bound goals of care, as well as identifying potential obstacles and ways to overcome these and (2) a pain management plan detailing exacerbating and alleviating factors, current strategies for management, and contacts for support. Self-management resources have the potential for addressing barriers not only at the patient level, but also at provider and health system levels. A cluster randomized controlled trial is under way to test effectiveness of the resource designed in this project in combination with pain screening, audit and feedback, and provider education. More research of this kind is needed to understand how interventions at different levels can be optimally combined to overcome barriers and improve care.
Publisher: Mary Ann Liebert Inc
Date: 09-2012
Publisher: Springer Science and Business Media LLC
Date: 25-07-2020
Publisher: Springer Science and Business Media LLC
Date: 11-08-2016
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 07-2008
Publisher: Public Library of Science (PLoS)
Date: 28-02-2023
DOI: 10.1371/JOURNAL.PONE.0282465
Abstract: About 70% of patients with advanced cancer experience pain. Few studies have investigated the use of healthcare in this population and the relationship between pain intensity and costs. Adults with advanced cancer and scored worst pain ≥ 2/10 on a numeric rating scale (NRS) were recruited from 6 Australian oncology alliative care outpatient services to the Stop Cancer PAIN trial (08/15-06/19). Out-of-hospital, publicly funded services, prescriptions and costs were estimated for the three months before pain screening. Descriptive statistics summarize the clinico-demographic variables, health services and costs, treatments and pain scores. Relationships with costs were explored using Spearman correlations, Mann-Whitney U and Kruskal-Wallis tests, and a gamma log-link generalized linear model. Overall, 212 participants had median worst pain scores of five (inter-quartile range 4). The most frequently prescribed medications were opioids (60.1%) and peptic ulcer/gastro-oesophageal reflux disease (GORD) drugs (51.6%). The total average healthcare cost in the three months before the census date was A$6,742 (95% CI $5,637, $7,847), approximately $27,000 annually. Men had higher mean healthcare costs than women, adjusting for age, cancer type and pain levels (men $7,872, women $4,493, p .01) and higher expenditure on prescriptions (men $5,559, women $2,034, p .01). In this population with pain and cancer, there was no clear relationship between healthcare costs and pain severity. These treatment patterns requiring further exploration including the prevalence of peptic ulcer/GORD drugs, and lipid lowering agents and the higher healthcare costs for men. ACTRN12615000064505 . World Health Organisation unique trial number U1111–1164–4649 . Registered 23 January 2015.
Publisher: Cambridge University Press (CUP)
Date: 06-02-2015
DOI: 10.1017/S1478951514001333
Abstract: Psychosocial interventions directed to couples where one has advanced cancer can reduce distress, enhance communication, and provide an opportunity for relational growth. The present study aimed to develop an intervention to facilitate communication about living with advanced cancer using the Patient Dignity Inventory (PDI) as the focus of a clinical interview with couples toward the end of life. Couples were recruited from oncology and palliative care services at a Sydney hospital. After the PDI was developed and manualized as an intervention for couples, the PDI–Couple Interview (PDI–CI) was delivered by a clinical psychologist and comprised the following: (1) the patient completed the PDI (2) the patient's identified partner completed the PDI about how they thought the patient was feeling and (3) the clinician reviewed the results with the couple, summarizing areas of concurrence and discordance and facilitating discussion. Some 34 couples were referred, of which 12 consented, 9 of whom completed the clinical interview. Reported benefits included enabling couples to express their concerns together, identifying differences in understanding, and giving “permission to speak” with each other. The focus of the interview around the PDI provided a structure that was particularly acceptable for men. Most couples confirmed that they were “on the same page,” and where differences were identified, it provided a forum for discussion and a mutual understanding of the challenges in managing advanced cancer within a supportive context. Participant couples' experiences of the PDI–CI provide valuable insight into the benefits of this intervention. This preliminary study indicates that the intervention is a relatively simple means of enhancing closer communication and connection between couples where one has advanced cancer and may be an important adjunct in helping prepare couples for the challenges inherent toward the end of life. Further investigation of feasibility with a larger s le is recommended.
Publisher: Springer Science and Business Media LLC
Date: 17-11-2020
DOI: 10.1186/S13063-020-04862-6
Abstract: With cannabis medicines now obtaining legal status in many international jurisdictions (generally on the authorisation of a medical professional), a rapid increase in consumer demand for access to cannabis as a therapeutic option in the treatment and management of a range of indications is being noted. Despite this accessibility, knowledge on optimal use is lacking. Further drug development and clinical trials at regulatory standards are necessary both if a better understanding of the efficacy of cannabis medicines, optimal product formulation and indication-specific dosing is needed and to ensure the broader quality and safety of cannabis medicines in the clinical setting. To enable this, clinical, academic and public calls for the undertaking of rigorous clinical trials to establish an evidence base for the therapeutic use of cannabis medicines have been made internationally. While this commitment to undertake human studies with cannabis medicines is welcomed, it has highlighted unique challenges, notably in the review stages of ethics and governance. This often results in lengthy delays to approval by Human Research Ethics Committees (herein ‘HREC’, Australia’s nomenclature for Institutional Review Boards) and trial commencement. A principal concern in these cases is that in contrast to clinical trials using other more conventional pharmaceutical products, trials of cannabis medicines in humans often involve the use of an investigational product prior to some (or any) of the preclinical and pharmaceutical safety issues being established. This paucity of data around product safety, potential drug interactions, continuity of supply, shelf life and product storage results in apprehension by HRECs and governance bodies to endorse trials using cannabis medicines. This manuscript draws from the experiences of Australian researchers and staff involved in clinical trials of cannabis medicines to describe some of the common difficulties that may be faced in the HREC approval process. It also presents practical advice aimed to assist researchers, HRECs and governance officers navigate this complex terrain. While the authors’ experiences are situated within the Australian setting, many of the barriers described are applicable within the international context and thus, the solutions that have been proposed are typically adaptive for use within other jurisdictions.
Publisher: American Society of Clinical Oncology (ASCO)
Date: 06-2014
Abstract: The WHO analgesic ladder for the treatment of cancer pain provides a three-step sequential approach for analgesic administration based on pain severity that has global applicability. Nonopioids were recommended for mild pain, with the addition of mild opioids for moderate pain and strong opioids for severe pain. Here, we review the evidence for the use of nonopioid analgesic agents in patients with cancer and describe the mode of action of the main drug classes. Evidence supports the use of anti-inflammatory drugs such as acetaminophen aracetamol and nonsteroidal anti-inflammatory drugs (NSAIDs) for mild cancer pain. Adding an NSAID to an opioid for stronger cancer pain is efficacious, but the risk of long-term adverse effects has not been quantified. There is limited evidence to support using acetaminophen with stronger opioids. Corticosteroids have a specific role in spinal cord compression and brain metastases, where improved analgesia is a secondary benefit. There is limited evidence for adding corticosteroids to stronger opioids when pain control is the primary objective. Systematic reviews suggest a role for antidepressant and anticonvulsant medications for neuropathic pain, but there are methodologic issues with the available studies. Bisphosphonates improve pain in patients with bony metastases in some tumor types. Denosumab may delay worsening of pain compared with bisphosphonates. Larger studies of longer duration are required to address outstanding questions concerning the use of nonopioid analgesia for stronger cancer pain.
Publisher: Hindawi Limited
Date: 2016
DOI: 10.1111/JONM.12353
Publisher: Elsevier BV
Date: 09-2019
DOI: 10.1016/J.JPAINSYMMAN.2019.05.020
Abstract: Pain and delirium are highly prevalent in the same patient groups. Disturbances in attention, awareness, and cognition are characteristics for delirium and can compromise pain assessment. The aim of this review was to examine and map models and understandings of pain and delirium as well as pain assessment instruments and strategies for adult patients with delirium. A scoping review of all publications that reported on pain assessment in adult patients with delirium was conducted with no time and language constraints, searching Medline, CINAHL, Scopus, Embase, and PsycINFO and systematically assessing for inclusion. Standardized data extraction and a narrative synthesis followed. A total of 90 publications were included in the final analysis. Despite being recommended for practice, no evidence for the use of self-report or behavioral pain assessment instruments in patients with delirium was identified, with the exception of limited evidence for the validity of the Critical Care Pain Observation Tool and Behavioral Pain Scale in delirious intensive care patients. Proxy ratings of pain and comprehensive pain assessment hierarchies were also recommended, but not supported by evidence. Current models and/or understandings of pain and delirium were not applied in most publications. The current literature is insufficient to guide clinical practice in pain assessment in patients with delirium. Future research will be needed to address the validity of existing pain assessment instruments, apply theoretical and conceptual understandings of pain and delirium, and build on prior studies to close evidence gaps.
Publisher: Mary Ann Liebert Inc
Date: 10-2017
Abstract: Red Blood Cell (RBC) transfusions are commonly used in palliative care. RBCs are a finite resource, transfusions carry risks, and the net effect (benefits and harms) is poorly defined for people with life-limiting illnesses. To examine the indications and effects of RBC transfusion in palliative care patients. This international, multisite, prospective consecutive cohort study. Palliative care patients undergoing RBC transfusion. Target symptoms (fatigue, breathlessness, generalized weakness, or dizziness) were assessed before transfusion and at day 7 by treating clinicians, using National Cancer Center Institute Common Terminology Criteria for Adverse Events. Assessment of harms was made at day 2. One hundred and one transfusions with day 7 follow-up were collected. Median age was 72.0 (interquartile range 61.5-83.0) years, 58% men, and mean Australia-modified Karnofsky Performance Status (AKPS) of 48 (standard deviation [SD] 17). A mean 2.1 (SD 0.6) unit was tranfused. The target symptoms were fatigue (61%), breathlessness (16%), generalized weakness (12%), dizziness (6%), or other (5%). Forty-nine percent of transfusions improved the primary target symptom, and 78% of transfusions improved at least one of the target symptoms. Harms were infrequent and mild. An AKPS of 40%-50% was associated with higher chances of symptomatic benefit in the target symptom however, no other predictors of response were identified. In the largest prospective consecutive case series to date, clinicians generally reported benefit, with minimal harms. Ongoing work is required to define the optimal patient- and clinician-reported hematological and functional outcome measures to optimize the use of donor blood and to minimize transfusion-associated risk.
Publisher: Springer Science and Business Media LLC
Date: 19-01-2023
DOI: 10.1007/S11060-023-04239-0
Abstract: High-grade glioma (HGG) is a rapidly progressing and debilitating disease. Family carers take on multiple responsibilities and experience high levels of distress. We aimed to deliver a nurse-led intervention (Care-IS) to carers to improve their preparedness to care and reduce distress. We conducted a randomised controlled trial (ACTRN:12612001147875). Carers of HGG patients were recruited during patients’ combined chemoradiation treatment. The complex intervention comprised four components: (1) initial telephone assessment of carer unmet needs (2) tailored hard-copy resource folder (3) home visit and, (4) monthly telephone support for up to 12 months. Primary outcomes included preparedness for caregiving and distress at 2, 4, 6 and 12 months. Intervention effects were estimated using linear mixed models which included a time by group interaction. Secondary outcomes included anxiety, depression, quality of life, carer competence and strain. We randomised 188 carers (n = 98 intervention, n = 90 control). The intervention group reported significantly higher preparedness for caregiving at 4 months (model β = 2.85, 95% CI 0.76–4.93) and all follow-up timepoints including 12 months (model β = 4.35, 95% CI 2.08–6.62), compared to the control group. However, there was no difference between groups in carer distress or any secondary outcomes. This intervention was effective in improving carer preparedness. However, carer distress was not reduced, potentially due to the debilitating rogressive nature of HGG and ongoing caring responsibilities. Future research must explore whether carer interventions can improve carer adjustment, self-efficacy and coping and how we support carers after bereavement. Additionally, research is needed to determine how to implement carer support into practice.
Publisher: Oxford University Press (OUP)
Date: 11-2017
Publisher: John Wiley & Sons, Ltd
Date: 17-02-1996
Publisher: Springer Science and Business Media LLC
Date: 22-09-2023
Publisher: Mary Ann Liebert Inc
Date: 09-2020
Publisher: Elsevier BV
Date: 03-2020
DOI: 10.1016/J.JPAINSYMMAN.2019.10.017
Abstract: Chronic breathlessness is a clinical syndrome that results in significant distress and disability. Morphine can reduce chronic breathlessness when the contributing etiologies are optimally treated. Does oxycodone reduce chronic breathlessness compared with placebo? A multisite, randomized, placebo-controlled, double-blind, parallel-arm, fixed-dose trial of oral controlled-release oxycodone 15 mg (5 mg, eight hourly) or placebo (ACTRN12609000806268 at www.anzctr.org.au). As-needed immediate-release morphine (2.5 mg per dose six and less doses/day) was available for both arms as required by one ethics committee overseeing the trial. Recruitment occurred from 2010 to 2014 in 14 inpatient and outpatient respiratory, cardiology, and palliative care services across Australia. Participants were adults, with chronic breathlessness (modified Medical Research Council Scale 3 or 4), who were opioid naive. The primary end point was the proportion of people with greater than 15% reduction from baseline in the intensity of breathlessness now (0-100 mm visual analogue scale) comparing arms Days 5-7. Secondary end points were average and worst breathlessness, quality of life, function, and harms. Of 157 participants randomized, 155 were included (74 oxycodone and 81 placebo), but the study did not reach target recruitment. There was difference in neither between groups for the primary outcome (P = 0.489) nor any of the prespecified secondary outcomes. Placebo participants used more as-needed morphine (mean 7.0 vs. 4.2 doses P ≤ 0.001). Oxycodone participants reported more nausea (P < 0.001). There was no signal of benefit from oxycodone over placebo. Future research should focus on investigating the existence of an opioid class effect on the reduction of chronic breathlessness.
Publisher: American Society of Clinical Oncology (ASCO)
Date: 10-02-2013
Publisher: Elsevier BV
Date: 08-2013
DOI: 10.1016/J.IJNURSTU.2012.11.001
Abstract: This integrative review aimed to appraise the evidence for case conferencing as an intervention to improve palliative care outcomes for older people living with advanced dementia in nursing homes. An integrative review of English language citations from CINHAL, MEDLINE, PSYCHINFO and CareSearch using a palliative care filter was undertaken. Two reviewers screened 238 titles to find 77 relevant articles which were reviewed in detail to identify nine studies that addressed the specific review questions. The analysis process allowed study characteristics, process and outcome measures along with implementation barriers and facilitators to be identified and the results synthesised. The highest level of evidence (Level II) was generated by two randomised controlled case conferencing trials which demonstrated enhance medication management for people with dementia living in a nursing home. Several pre-post test studies suggest that case conferencing enhances palliative symptom management and care outcomes in nursing homes. Qualitative evidence suggests that case conferencing is feasible and worthwhile if the identified barriers are addressed and the facilitators optimised. Case conferencing provides opportunities to improve care palliative care outcomes for older people with dementia by engaging family and all relevant internal and external health providers in prospective care planning. More evidence is needed to determine the efficacy and cost-effectiveness of case conferencing as a strategy for improving care outcomes for older people living with advanced dementia in nursing homes. The evidence generated by this integrative review will be of interest to policy makers, aged care organisations and clinicians alike, especially as services endeavour to meet the increasingly complex care needs of older people admitted to nursing homes with advanced dementia, and the needs of their families.
Publisher: MDPI AG
Date: 08-10-2021
DOI: 10.3390/CURRONCOL28050339
Abstract: Cognitive assessment is a cornerstone of geriatric care. Cognitive impairment has the potential to significantly impact multiple phases of a person’s cancer care experience. Accurately identifying this vulnerability is a challenge for many cancer care clinicians, thus the use of validated cognitive assessment tools are recommended. As international cancer guidelines for older adults recommend Geriatric Assessment (GA) which includes an evaluation of cognition, clinicians need to be familiar with the overall interpretation of the commonly used cognitive assessment tools. This rapid review investigated the cognitive assessment tools that were most frequently recommended by Geriatric Oncology guidelines: Blessed Orientation-Memory-Concentration test (BOMC), Clock Drawing Test (CDT), Mini-Cog, Mini-Mental State Examination (MMSE), Montreal Cognitive Assessment (MoCA), and Short Portable Mental Status Questionnaire (SPMSQ). A detailed appraisal of the strengths and limitations of each tool was conducted, with a focus on practical aspects of implementing cognitive assessment tools into real-world clinical settings. Finally, recommendations on choosing an assessment tool and the additional considerations beyond screening are discussed.
Publisher: Rural and Remote Health
Date: 06-05-2022
DOI: 10.22605/RRH7000
Publisher: SAGE Publications
Date: 05-2022
DOI: 10.1177/02692163221082245
Abstract: Palliative populations are at risk for dehydration which can cause discomfort, distress and cognitive symptoms. Subcutaneous hydration (‘hypodermoclysis’) has been used as an alternative administration route to the more invasive intravenous route, but research is lacking on its net clinical effects (harms and benefits) for palliative populations, particularly in real world settings. To quantify prospectively the net clinical effects of hypodermoclysis in palliative patients with advanced disease who required supplementary fluids. Multisite, multinational consecutive cohort study. Patients receiving hypodermoclysis in an inpatient palliative care setting. Twenty sites contributed data for 99 patients, of which 88 had complete benefits and harms data. The most common primary target symptom for infusion was generalised weakness (18.2%), and the most common non-symptom indication was supplemental hydration (31.8%). Benefits were experienced in 33% of patients in their primary target symptom, and in any symptom in 56.8%. Harms were experienced in 38.7% of patients (42% at Grade 1). Benefits increased with higher performance status, while harms were more frequent in patients with lower performance status (Australia-modified Karnofsky performance status ⩽40). Patients in the terminal phase of their illness experienced the least benefit (15.4% in any indication only) and had more frequent harms (38%). Hypodermoclysis may improve certain symptoms in patients in palliative care but frequency of harms and benefits may differ at certain timepoints in the illness trajectory. Further research is needed to better delineate which patients will derive the most net clinical benefit from hypodermoclysis.
Publisher: SAGE Publications
Date: 28-08-2008
Abstract: Place of death is at times suggested as an outcome for palliative care services. This study aimed to describe longitudinal preferences for place of care and place of death over time for patients and their caregivers. Longitudinal paired data of patient/caregiver dyads from a prospective unblinded cluster randomised control trial were used. Patients and caregivers were separately asked by the palliative care nurse their preference at that time for place of care and place of death. Longitudinal changes over time for both questions were mapped patterns of agreement (patient and caregiver and preference for place of death when last asked and actual placed of death) were analysed with kappa statistics. Seventy-one patient/caregiver dyads were analysed. In longitudinal preferences, preferences for both the place of care (asked a mean of times) and place of death (asked a mean of times) changed for patients (28% and 30% respectively) and caregivers (31% and 30%, respectively). In agreement between patients and caregivers, agreement between preference of place of care and preferred place of death when asked contemporaneously for patients and caregivers was low [56% (κ 0.33) and 36% (κ 0.35) respectively]. In preference versus actual place of death, preferences were met for 37.5% of participants for home death 62.5% for hospital 76.9% for hospice and 63.6% for aged care facility. This study suggests that there are two conversations: preference for current place of care and preference for care at the time of death. Place of care is not a euphemism for place of death and further research is needed to delineate these. Patient and caregiver preferences may not change simultaneously. Implications of any mismatch between actual events and preferences need to be explored.
Publisher: Wiley
Date: 31-05-2022
DOI: 10.1111/ACPS.13457
Abstract: Little is known about the economic value of clinical interventions for delirium. This review aims to synthesise and appraise available economic evidence, including resource use, costs, and cost‐effectiveness of interventions for reducing, preventing, and treating delirium. Systematic review of published and grey literature on full and partial economic evaluations. Study quality was assessed using the Consolidated Health Economic Evaluation Reporting Standards (CHEERS). Fourteen economic evaluations (43% full, 57% partial) across nine multicomponent and nonpharmacological intervention types met inclusion criteria. The intervention costs ranged between US$386 and $553 per person in inpatient settings. Multicomponent delirium prevention intervention and the Hospital Elder Life Program (HELP) reported statistically significant cost savings or cost offsets somewhere else in the health system. Cost savings related to inpatient, outpatient, and out‐of‐pocket costs ranged between $194 and $6022 per person. The average CHEERS score was 74% (±SD 10%). Evidence on a joint distribution of costs and outcomes of delirium interventions was limited, varied and of generally low quality. Directed expansion of health economics towards the evaluation of delirium care is necessary to ensure effective implementation that meets patients' needs and is cost‐effective in achieving similar or better outcomes for the same or lower cost.
Publisher: Mary Ann Liebert Inc
Date: 07-2023
Publisher: American Society of Clinical Oncology (ASCO)
Date: 20-05-2018
Publisher: Mary Ann Liebert Inc
Date: 06-2015
Abstract: Many people in our communities live with symptoms for years or decades, something of relevance to hospice alliative care clinicians and researchers. The proportion of people in the community at large who have a chronic symptom is likely to approximate the proportion of people referred to hospice alliative care services with that same chronic symptom that pre-dates their life-limiting illness. Such patients may have different responsiveness to, and expectations from, symptomatic therapies, thus requiring more advanced approaches to symptom control. For researchers evaluating the impact of hospice alliative care services, failing to account for people with long-term refractory symptoms pre-dating their life-limiting illness may systematically underestimate services' benefits. Observational symptom prevalence studies reported in hospice alliative care to date have not accounted for people with long-term refractory symptoms, potentially systematically overestimating symptoms attributed to life-limiting illnesses. Cross-sectional community prevalence rates of key chronic refractory symptoms largely unrelated to their life-limiting illness reflect the likely prevalence on referral to hospice alliative care: fatigue (up to 35%) pain (12%-31%) pain with neuropathic characteristics (9%) constipation (2%-29%) dyspnea (4%-9%) cognitive impairment (>10% of people >65 years old >30% of people >85 years old) anxiety (4%) and depression (lifetime incidence 2%-15% one year prevalence 3%). Prospective research is needed to establish (1) the prevalence and severity of chronic symptoms that pre-date the diagnosis of a life-limiting illness in people referred to hospice alliative care services, comparing this to whole-of-population estimates and (2) whether this group is disproportionately represented in people with refractory symptoms.
Publisher: American Society of Clinical Oncology (ASCO)
Date: 06-2023
DOI: 10.1200/JCO.2023.41.16_SUPPL.TPS12146
Abstract: TPS12146 Background: Management of neuropathic cancer pain (NCP) refractory to regular opioids remains an important challenge. The efficacy of pregabalin for NCP except chemotherapy-induced peripheral neuropathy has already been confirmed in two randomised controlled trials (RCTs) compared with placebo. Duloxetine offers the potential of analgesia in opioid refractory NCP. However, there are no RCT of duloxetine for the management of opioid-refractory NCP as a first line treatment. Both classes of drugs have the potential to reduce NCP, but there has been no head-to-head comparison for the efficacy and safety, especially given differing side effect profiles. Methods: An international, multicentre, double-blind, dose increment, parallel-arm, RCT. Eligibility criteria include: adult cancer patients experiencing NCP refractory to opioids Brief Pain Inventory (BPI)-item 3 (worst pain) ≥4 Neuropathic Pain on the Leeds Assessment of Neuropathic Symptoms and Signs Pain Scale ≥12 despite of an adequate trial of regular opioid medication (≥60mg/day oral morphine equivalent dose). The study will recruit inpatients and outpatients in Japan and Australia. Participants will be randomised (1:1 allocation ratio) to duloxetine or pregabalin. Dose escalation is to day 14 and from day 14 to 21 is a dose de-escalation period to avoid withdrawal effects. Dose escalation schedule in each-arm is shown in Table 1. The primary endpoint is the mean difference in BPI item 3 over the previous 24 hours on day 14 between groups. Null hypothesis is there is no difference in BPI item 3 in the previous 24 hours on day 14 between both groups for patients with opioid refractory NCP. Comparison of the BPI item 3 on day 14 between duloxetine groups and pregabalin groups will be conducted using a two-sided Student’s t-test at a significance level of 5% according to the intention-to-treat principle. Point estimates and 95% CIs for the difference between two groups will be calculated. A s le size of 160 participants is required with 67 subjects enrolled to date. The DSMC last reviewed the trial in December 2022 and case accumulation expected to be completed by the end of 2024. Table 1:Dose escalation schedule in each-arm. Duloxetine Arm Stage 1 (Day 1-3): Duloxetine (30 mg) 1 capsule (morning) and Placebo 1 capsule (bedtime) Stage 2 (Day 4-7): Same as Stage 1 Stage 3 (Day 8-14): Duloxetine (30 mg) 1 capsule twice a day (morning and bedtime). Pregabalin Arm Stage 1 (Day 1-3): Pregabalin (25 mg) 1 capsule twice a day (morning and bedtime). Stage 2 (Day 4-7): Pregabalin (75 mg) 1 capsule twice a day (morning and bedtime). Stage 3 (Day 8-14): Pregabalin (75 mg) 2 capsules (150 mg) twice a day (morning and bedtime). Clinical trial information: ACTRN12620000656932 , jRCTs051190087.
Publisher: Oxford University Press (OUP)
Date: 09-10-2019
DOI: 10.1002/BJS.11326
Abstract: Ileus is common after elective colorectal surgery, and is associated with increased adverse events and prolonged hospital stay. The aim was to assess the role of non-steroidal anti-inflammatory drugs (NSAIDs) for reducing ileus after surgery. A prospective multicentre cohort study was delivered by an international, student- and trainee-led collaborative group. Adult patients undergoing elective colorectal resection between January and April 2018 were included. The primary outcome was time to gastrointestinal recovery, measured using a composite measure of bowel function and tolerance to oral intake. The impact of NSAIDs was explored using Cox regression analyses, including the results of a centre-specific survey of compliance to enhanced recovery principles. Secondary safety outcomes included anastomotic leak rate and acute kidney injury. A total of 4164 patients were included, with a median age of 68 (i.q.r. 57–75) years (54·9 per cent men). Some 1153 (27·7 per cent) received NSAIDs on postoperative days 1–3, of whom 1061 (92·0 per cent) received non-selective cyclo-oxygenase inhibitors. After adjustment for baseline differences, the mean time to gastrointestinal recovery did not differ significantly between patients who received NSAIDs and those who did not (4·6 versus 4·8 days hazard ratio 1·04, 95 per cent c.i. 0·96 to 1·12 P = 0·360). There were no significant differences in anastomotic leak rate (5·4 versus 4·6 per cent P = 0·349) or acute kidney injury (14·3 versus 13·8 per cent P = 0·666) between the groups. Significantly fewer patients receiving NSAIDs required strong opioid analgesia (35·3 versus 56·7 per cent P & 0·001). NSAIDs did not reduce the time for gastrointestinal recovery after colorectal surgery, but they were safe and associated with reduced postoperative opioid requirement.
Publisher: Elsevier BV
Date: 03-2015
DOI: 10.1016/J.COLEGN.2013.11.002
Abstract: Cancer pain remains a major public health concern. Despite effective treatments being available to manage the majority of cancer pain, this debilitating symptom is frequently under treated. As cancer has becomes a chronic disease a range of health professionals, including community nurses in Australia are increasingly caring for people living with cancer related pain. Yet, little is known about community nurses capacity to assess and manage cancer pain in accordance with best available evidence. This study aimed to: identify the barriers and facilitators to adult cancer pain assessment and management as perceived by Australian health professionals identify if cancer pain guidelines are currently used identify barriers and facilitators to guideline use and establish the need for Australian cancer pain guidelines. This article reports on community nurses' perceptions of managing cancer pain in the community setting. A cross-sectional survey was administered online. Invitations were circulated via peak bodies and clinical leaders seeking the views and experiences of health professionals involved in caring for people living with cancer pain. Descriptive statistics were used to summarise the quantitative data, and thematic content analysis were used to describe the qualitative data. Sixty-two community nurses responded to the survey, representing 29% of the total s le. These participants reported high levels of adherence to accepted cancer pain management practices in their workplace, with 71% nominating the Palliative Care Therapeutic Guideline V.3 as being most frequently used to manage community patients' cancer related pain. Key barriers to effective cancer pain management in the community were: difficulties accessing non-pharmacological interventions (89%), lack of coordination by multiple providers (89%), and impact of distance on ability to access pain-related services for patients (86%). A range of system, health professional and consumer barriers limit access to best available treatment in the community setting for people with cancer pain. A clinical pathway that gives step-by-step guidance on evidence-based practice along with an evaluation framework may be the best way of enabling community nurses to ensure their patients with cancer related pain have access to best available care.
Publisher: American Medical Association (AMA)
Date: 22-11-2022
Abstract: Chronic breathlessness is common in people with chronic obstructive pulmonary disease (COPD). Regular, low-dose, extended-release morphine may relieve breathlessness, but evidence about its efficacy and dosing is needed. To determine the effect of different doses of extended-release morphine on worst breathlessness in people with COPD after 1 week of treatment. Multicenter, double-blind, placebo-controlled randomized clinical trial including people with COPD and chronic breathlessness (defined as a modified Medical Research Council score of 3 to 4) conducted at 20 centers in Australia. People were enrolled between September 1, 2016, and November 20, 2019, and followed up through December 26, 2019. People were randomized 1:1:1 to 8 mg/d or 16 mg/d of oral extended-release morphine or placebo during week 1. At the start of weeks 2 and 3, people were randomized 1:1 to 8 mg/d of extended-release morphine, which was added to the prior week’s dose, or placebo. The primary outcome was change in the intensity of worst breathlessness on a numerical rating scale (score range, 0 [none] to 10 [being worst or most intense]) using the mean score at baseline (from days −3 to −1) to the mean score after week 1 of treatment (from days 5 to 7) in the 8 mg/d and 16 mg/d of extended-release morphine groups vs the placebo group. Secondary outcomes included change in daily step count measured using an actigraphy device from baseline (day −1) to the mean step count from week 3 (from days 19 to 21). Among the 160 people randomized, 156 were included in the primary analyses (median age, 72 years [IQR, 67 to 78 years] 48% were women) and 138 (88%) completed treatment at week 1 (48 in the 8 mg/d of morphine group, 43 in the 16 mg/d of morphine group, and 47 in the placebo group). The change in the intensity of worst breathlessness at week 1 was not significantly different between the 8 mg/d of morphine group and the placebo group (mean difference, −0.3 [95% CI, −0.9 to 0.4]) or between the 16 mg/d of morphine group and the placebo group (mean difference, −0.3 [95%, CI, −1.0 to 0.4]). At week 3, the secondary outcome of change in mean daily step count was not significantly different between the 8 mg/d of morphine group and the placebo group (mean difference, −1453 [95% CI, −3310 to 405]), between the 16 mg/d of morphine group and the placebo group (mean difference, −1312 [95% CI, −3220 to 596]), between the 24 mg/d of morphine group and the placebo group (mean difference, −692 [95% CI, −2553 to 1170]), or between the 32 mg/d of morphine group and the placebo group (mean difference, −1924 [95% CI, −47 699 to 921]). Among people with COPD and severe chronic breathlessness, daily low-dose, extended-release morphine did not significantly reduce the intensity of worst breathlessness after 1 week of treatment. These findings do not support the use of these doses of extended-release morphine to relieve breathlessness. ClinicalTrials.gov Identifier: NCT02720822
Publisher: BMJ
Date: 16-10-2014
Publisher: Elsevier BV
Date: 12-2004
Publisher: SAGE Publications
Date: 06-2018
Abstract: Translating research evidence into clinical practice often has a long lag time. To determine the impact of a phase III randomised controlled trial on palliative care clinicians’ self-reported practice change. Online survey about use of octreotide in managing inoperable malignant bowel obstruction due to cancer or its treatments distributed in November 2016, 2 years after the first publication of the study in a peer-reviewed journal. Demographic, self-reported practice and the reasons underpinning this were collected. Responses were aggregated to ‘practice modified’ or ‘practice not modified’. A multinomial regression model explored predictors of practice change. Members of the Australian New Zealand Society of Palliative Medicine. Response rate was 20.8% (106/509): 55.6% were aged years, 56.5% were female and 77% had previously prescribed octreotide for this clinical indication. Out of 106 respondents, 52 (49.1%) indicated modified practice (60.9% of those who had previously prescribed octreotide in this setting). In those who reported practice change, most frequently octreotide was now used when other therapies failed for not changing practice, ‘more confirmatory evidence was needed’ was most often cited. In the regression model, older age (clinician age = 50–59 years relative risk = 0.147 95% confidence interval = 0.024–0.918 p = 0.04) and having practices with lower proportions of people treated with octreotide (0%–20% relative risk = 0.039 95% confidence interval = 0.002–0.768 p = 0.033) predicted greater self-reported practice change. Clinician-reported change in practice in the survey is seen in the majority of respondents. This suggests that there is a cohort of ‘early adopters’ within palliative care practice as new evidence becomes available.
Publisher: European Respiratory Society (ERS)
Date: 25-10-2019
DOI: 10.1183/13993003.01270-2018
Abstract: Does sertraline provide symptomatic relief for chronic breathlessness in people with advanced disease whose underlying cause(s) are optimally treated? 223 participants with chronic breathlessness (modified Medical Research Council breathlessness scale ≥2) who had optimal treatment of underlying cause(s) were randomised 1:1 to sertraline 25–100 mg (titrated upwards over 9 days) or placebo for 4 weeks. The primary outcome was the proportion who had an improvement in intensity of current breathlessness % from baseline on a 100-mm visual analogue scale. The proportion of people responding to sertraline was similar to placebo for current breathlessness on days 26–28 (OR 1.00, 95% CI 0.71–1.40) and for other measures of breathlessness. Quality of life in the sertraline arm had a higher likelihood of improving than in the placebo arm over the 4 weeks (OR 0.21, 95% CI 0.01–0.41 p=0.044). No differences in performance status, anxiety and depression, or survival were observed. Adverse event rates were similar between arms. Sertraline does not appear to provide any benefit over placebo in the symptomatic relief of chronic breathlessness in this patient population.
Publisher: Wiley
Date: 30-08-2019
DOI: 10.1002/PON.5200
Abstract: To compare physical and mental health status between cancer carers versus non-carers in a population-based s le and explore sociodemographic and caring characteristics associated with poor carer health status. The South Australian Health Omnibus is a population-based cross-sectional survey. Carer status was self-defined by participants as having cared for someone with cancer in the last 5 years. Health status was considered poor if it was 0.5 standard deviation lower than Australian norms on the Medical Outcomes Study 12-Item Short-Form (SF-12) physical and mental component summary scores (PCS and MCS). Regression analyses compared mean PCS/MCS between carers versus non-carers, controlling for sociodemographic variables, and explored associations between poor health status and caring and support among carers. The weighted s le included 2962 people, of whom 374 (12.6%) were cancer carers and 1993 (67.3%) non-carers. Carers had significantly worse PCS/MCS, controlling for sociodemographic variables, but did not differ significantly regarding proportions with poor health status. Carer characteristics associated with poor PCS and MCS included socio-economic indicators and involvement in medication management. Assisting with household tasks was protective. This population-based study followed those previous ones in finding cancer carers to have poorer mean health status than non-carers. However, differences were less pronounced than previously reported, likely because of the s le being drawn from a general rather than cancer service population and including past as well as current carers, as well as all cancer types and stages. Future longitudinal research is needed to identify factors that predict recovery post caring.
Publisher: Mary Ann Liebert Inc
Date: 09-2011
Publisher: Elsevier BV
Date: 2023
DOI: 10.1016/J.JPAINSYMMAN.2022.09.015
Abstract: Delirium commonly occurs in the palliative care setting and impacts many aspects of patient care, such as symptom assessment, patient-clinician communication, and medical decision-making. One controversial topic regarding the management of delirium in the palliative care setting is whether neuroleptics should be used. In this "Controversies in Palliative Care" article, 3 expert clinicians independently answer this question. Specifically, each group provides a synopsis of the key studies that inform their thought processes, share practical advice on their clinical approach, and highlight the opportunities for future research. Interestingly, all 3 experts arrived at similar conclusions-they underscored the importance of identification and treatment of any reversible causes of delirium and endorsed a trial of non-pharmacologic measures. They also agreed that neuroleptics should be considered for patients with hyperactive or mixed delirium when the conservative measures fail to control delirium symptoms and for delirious patients with days of life expectancy and thus limited time to try other measures. Risk of adverse effects such as extrapyramidal symptoms and seizures should be considered as part of the treatment decision. There is also a need to conduct high quality research to examine both neuroleptics and neuroleptic-sparing strategies for the management of delirium.
Publisher: CSIRO Publishing
Date: 2016
DOI: 10.1071/AH15012
Abstract: Objective The aim of the present study was to estimate the potential healthcare cost savings associated with reduced prescribing of subcutaneous ketamine for the treatment of chronic cancer pain after publication of the Palliative Care Clinical Studies Collaborative (PaCCSC) ketamine randomised controlled trial (RCT), to provide further reasons to modify ketamine prescribing practice in this setting. Methods Potential cost savings in this setting were estimated from a health system perspective using a 1-year impact model. The model was populated with estimates derived using an epidemiological approach informed by morbidity and prevalence data, the PaCCSC feasibility study, ketamine RCT and national ketamine utilisation survey results, as well as clinical opinion. Results The total estimated annual hospitalisation costs associated with subcutaneous ketamine prescribing were A$3 899 600 (2605 bed-days). A 17% reduction in ketamine prescribing lowered hospitalisation costs to A$3 236 668 (2162 bed-days), a reduction of A$662 932 (443 bed-days) because of reduced in-patient stays associated with ketamine toxicity and prescribing process. Conclusions The findings from the modelled impact analysis suggest that dissemination of the PaCCSC ketamine RCT results may have saved the Australian healthcare system approximately A$663 000 in annual hospitalisation costs and freed up 443 in-patient bed-days, although there was high uncertainty within the study. Wider dissemination over time and targeted, local de-adoption strategies could result in further savings.
Publisher: Mary Ann Liebert Inc
Date: 03-2022
Publisher: Mary Ann Liebert Inc
Date: 10-2020
Publisher: Elsevier BV
Date: 09-2004
Publisher: Springer Science and Business Media LLC
Date: 05-09-2019
DOI: 10.1007/S11136-018-1987-0
Abstract: Assessing health-related quality of life (HRQOL) in people with advanced dementia is challenging but important for informed decision-making. Proxy measurement of this construct is difficult and is often rated lower than self-report. Accurate proxy rating of quality of life in dementia is related to identification of concepts important to the person themselves, as well as the sensitivity of the measures used. The main aim of this study was to compare the performance of two instruments-QUALID and EQ-5D-5L-on measuring HRQOL in people with advanced dementia. In a sub-study nested within a cluster-RCT we collected proxy(nurse)-completed EQ-5D-5L and QUALID measures at baseline, 3, 6, 9 and 12 months' follow-up for people with advanced dementia, residing in 20 nursing homes across Australia. Spearman's rank correlations, partial correlations and linear regressions were used to assess the relationship between the HRQOL instrument scores and their changes over time. The mean weight from 284 people for the EQ-5D-5L and QUALID at baseline were 0.004 (95% CI - 0.026, 0.033) and 24.98 (95% CI 24.13, 25.82), respectively. At 12 months' follow-up, 115 participants remained alive. EQ-5D-5L weights and QUALID scores at baseline and at follow-up were moderately correlated (r = - 0.437 p < 0.001 at 12 months). Changes within QUALID and EQ-5D-5L across the same follow-up periods were also correlated (r = - 0.266 p = 0.005). The regression analyses support these findings. Whilst these quality of life instruments demonstrated moderate correlation, the EQ-5D-5L does not appear to capture all aspects of quality of life that are relevant to people with advanced dementia and we cannot recommend the use of this instrument for use within this population. The QUALID appears to be a more suitable instrument for measuring HRQOL in people with severe dementia, but is not preference-based, which limits its application in economic evaluations of dementia care.
Publisher: SAGE Publications
Date: 07-2008
Abstract: Introduction: Delirium in advanced cancer is prevalent, with limited prospective data to guide management. The aim was to survey current practice of specialists using two contrasting cases of delirium in cancer. Methods: A questionnaire was designed to identify investigations and treatment used, in relation to two cases. Results: Overall response rate ( n = 270) was 30%. Place of care: Only 35% of medical oncologists would consider care at home for a patient with reversible delirium compared with 66% of other specialists. Investigations: 85% specialists would order basic bloods, however, medical oncologists were more likely to use oxygen saturation and head computed tomography, psychogeriatricians more likely to order thyroid function and palliative medicine specialists less likely to order chest X-ray and urine culture. Greater than 40% of specialists would do no investigations for terminal delirium. Treatment: Medical oncologists use more pre-emptive therapies and more likely to use a benzodiazepine as agent of choice, and Palliative medicine specialists used significantly more neuroleptics to treat hypoactive symptoms of delirium. Discussion: The survey emphasise significant areas of variability in the management of delirium in advanced cancer. Furthermore, evidence to guide management in ways that draw on the strengths and knowledge of each specialty is urgently needed.
Publisher: Springer Science and Business Media LLC
Date: 12-2019
DOI: 10.1007/S11673-019-09945-X
Abstract: Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six interviews (twenty-one dyadic and fifteen in idual) were undertaken with fifty-seven participants (twenty-five people living with dementia and thirty-two family members) across three states in Australia. Interpretative Phenomenological Analysis (IPA) was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants’ experiences with decision-making: “the person in relationship over time” and “maintaining involvement.” Participant views on the practical issues associated with supported decision-making are addressed under the themes of “facilitating decision-making,” “supported decision-making arrangements,” “constraints on decision-making,” and “safeguarding decision-making.” While participants endorsed the principles of supported decision-making as part of their overarching strategy of “maintaining involvement” in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual “constraints on decision-making” also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a “spectrum approach” to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population.
Publisher: Elsevier BV
Date: 09-2019
Publisher: European Respiratory Society
Date: 15-09-2018
Publisher: BMJ
Date: 06-2021
DOI: 10.1136/BMJOPEN-2021-052312
Abstract: Major depressive disorder (MDD) in people with advanced life-limiting illnesses can have significant impact on the quality-of-life of those affected. The management of MDD in the palliative care setting can be challenging as typical antidepressants may not work in time nor be tolerated due to coexisting organ dysfunctions, symptom burden and frailty. Parenteral ketamine was found to exhibit effective and rapid-onset antidepressant effect even against treatment-resistant depression in the psychiatric population. However, there is currently neither feasibility study nor available prospective study available to inform of the safety, tolerability and efficacy of such for MDD in the palliative setting. This is an open-labelled, single arm, phase II pilot feasibility study involving adult patients with advanced life-limiting illnesses and MDD across four palliative care services in Australia. It has an in idual dose-titration design (0.1–0.4 mg/kg) with weekly treatments of subcutaneous ketamine infusion over 2 hours. The primary outcome is feasibility. The secondary outcomes are related to the safety, tolerability and antidepressant efficacy of ketamine, participants’ satisfaction in relation to the trial process and the reasons for not completing the study at various stages. The feasibility data will be reported using descriptive statistics. Meanwhile, side effects, tolerability and efficacy data will be analysed using change of assessment scores from baseline. Ethics approval was acquired (South Western Sydney Local Health District: HREC/18/LPOOL/466). The results of this study will be submitted for publication in peer-reviewed journals and presented at relevant conferences. Australian New Zealand Clinical Trial Registry Number: ACTRN12618001586202 Pre-results.
Publisher: Mary Ann Liebert Inc
Date: 05-2013
Abstract: Obtaining informed consent is a key protection that should be afforded universally to people using health services and the basis around which any participation in clinical trials is built. Randomized controlled effectiveness studies are necessary to answer key questions in hospice and palliative care, in order to help systematically improve the quality of care. In order to be properly generalizable, such trials need to have broad inclusion criteria to reflect the population most likely to be affected by the condition. The inclusion of patients who are seriously ill, and therefore potentially vulnerable, requires careful exploration of ethical and legal principles that underpin informed consent. Specific challenges in obtaining informed consent for randomised clinical trials (RCTs) in clinically unstable populations such as hospice and palliative care include higher rates of people with impaired cognitive capacity as well as interventional studies in clinical situations which may present as a sudden change in condition. None of these challenges is unique to hospice and palliative care research, but the combination and frequency with which they are encountered require systematic and considered solutions. This article outlines five different ethically valid consent approaches and discusses their applicability to hospice and palliative care research trials. These include: consent by the patient (at the time of enrolment, in advance of the study, or delayed until after the study has commenced) a proxy (or legally authorised representative) or a consent waiver. Increased use of the less traditional modes of informed consent may lead to greater participation rates in hospice and palliative care trials, thereby improving the evidence base more rapidly in part by better reflecting the population served and hence improving generalizability.
Publisher: SAGE Publications
Date: 31-07-2020
Publisher: Springer Science and Business Media LLC
Date: 16-04-2019
DOI: 10.1007/S00520-019-04754-9
Abstract: Head-to-head comparison of reliability, validity and responsiveness of four patient-reported outcome measures (PROMS) suitable for assessing health-related quality of life (HRQOL) in palliative care settings: EORTC QLQ-C15-PAL, FACT-G7, FACIT-Pal and short-form FACIT-Pal-14. Secondary analysis of two phase III randomised trials: ketamine for chronic cancer pain, octreotide for vomiting in inoperable malignant bowel obstruction. Sub-groups were defined by Australia-modified Karnofsky performance status (AKPS) and participants' global impression of change (GIC). Two aspects of reliability were assessed: internal consistency (Cronbach alpha, α) test-retest reliability (intra-class correlation coefficient (ICC)) of patients with stable AKPS and those who self-reported 'no change' on GIC. Construct validity was assessed via pre-determined hypotheses about sensitivity of PROM scores to AKPS groups and responsiveness of PROM change scores to GIC groups using analysis of variance. FACIT-Pal had better internal consistency (α ranged 0.59-0.80, 15/18 ≥ 0.70) than QLQ-C15-PAL (0.51-0.85, 4/8 ≥ 0.70) and FACT-G7 (0.54-0.64, 0/2 ≥ 0.70). FACIT scales had better test-retest reliability (FACIT-Pal 11/27 ICCs ≥ 0.70, FACT-G7 2/3 ICCs ≥ 0.70) than QLQ-C15-PAL (2/30 ICCs ≥ 0.70, 18/30 ≤ 0.5). Four scales demonstrated sensitivity to AKPS: QLQ-PAL-15 Physical Functioning and Global QOL, FACT-G Functional Wellbeing and FACIT-Pal Trial Outcome Index (TOI). Nine scales demonstrated responsiveness: three in the ketamine trial population (QLQ-C15-PAL Pain, FACIT-Pal-14, FACT-G7), six in the octreotide trial population (QLQ-C15-PAL Fatigue FACIT-Pal PalCare, TOI, Total FACT-G Physical Wellbeing and Total). No PROM was clearly superior, confirming that choosing the best PROM requires careful consideration of the research goals, patient population and the domains of HRQOL targeted by the intervention being investigated.
Publisher: Oxford University Press (OUP)
Date: 12-09-2021
DOI: 10.1093/NOP/NPAA057
Abstract: Emerging evidence supports the clinical impact of sleep disturbance (SD) on cancer patients. This study aimed to determine the prevalence and predictors of SD in people with malignant brain tumors and caregivers, and explore any relationship between the patient-caregiver dyad’s sleep. Eighty-one adults with primary malignant (91%) or metastatic (9%) brain tumors and their family caregivers (n = 44) completed a series of self-report questionnaires, including the Pittsburgh Sleep Quality Index (PSQI), the Insomnia Severity Index, and the drowsiness item of The MD Anderson Symptom Inventory-Brain Tumor in an Australian ambulatory neuro-oncology setting. Participants were grouped by the PSQI cutoff (SD & 5), and binary logistic regression analyses were performed to identify risk factors. Of patients, 53% reported SD and 15% of those clinically significant insomnia, and 27% reported moderate to severe daytime drowsiness. Whereas anxiety, depression, fatigue, pain, neurocognitive symptoms, and antiemetic use were higher in patients with SD, fatigue and KPS were strong predictors of SD. In caregivers, 55% reported poor sleep and 13% clinical insomnia. Anxiety, caregiver burden, and comorbid illness were significantly associated with caregivers’ SD. The in idual’s SD did not affect the chance of the other member of the patient-caregiver dyad experiencing SD. More than half the s le had sleep disturbance, which was linked to many concomitant symptoms, such as fatigue in patients and anxiety in caregivers, potentially contributing to distress and functional impairment. Understanding underlying mechanisms of SD, the potential use of these clinical predictors in care settings, and options for management is warranted.
Publisher: Elsevier BV
Date: 08-2014
Publisher: Elsevier BV
Date: 07-2022
Publisher: Oxford University Press
Date: 04-2015
DOI: 10.1093/MED/9780199656097.003.0163
Abstract: Palliative care in the older person occurs in the context of chronic disease and multimorbidity. Coexisting conditions include musculoskeletal, psychiatric, cognitive, and chronic pain-related problems, each associated with substantive symptomatology and disability. Most crucial is to avoid management within disease ‘silos’ and the risks associated with polypharmacy, which both contribute to adverse outcomes. The complexity of older people’s care demands the formation of a collaborative partnership between primary care, geriatric, and palliative care services, together with other health-care providers in accordance with need. The caregiver of the older person warrants specific mention, often an older spouse with their own medical problems or an adult child juggling other life and work commitments. Planning for care in advance is crucial to avoid decisions being made in crisis, and is particularly crucial if cognitive decline is predicted. Physiological changes, and the frequency of falls, frailty, depression, and delirium are important when planning care and prescribing.
Publisher: BMJ
Date: 10-06-2016
DOI: 10.1136/BMJSPCARE-2015-001037
Abstract: Loss of appetite is prevalent in palliative care and distressing for patients and families. Therapies include corticosteroids or progestogens. This study explores the net effect of dexamethasone on anorexia. Prospective data were collected when dexamethasone was started for anorexia as part of routine care. The National Cancer Institute's Common Toxicity Criteria for Adverse Events (NCICTCAE) Likert scales assessed severity of anorexia and immediate and short-term harms at 2 time points: baseline and 7 days. This study (41 sites, 8 countries) collected data (July 2013 to July 2014) from 114 patients (mean age 71 (SD 11), 96% with cancer). Median Australian-modified Karnofsky Performance Scale was 50% (range 20-70). Mean baseline NCICTCAE anorexia score was 2.7 (SD 0.6 median 3). 6 patients died by day 7. Of 108 evaluable patients, 74 (68.5% 95% CI 59.0% to 76.7%) reported ≥1 reduction anorexia scores by day 7, of whom 30 were 0. Mean dexamethasone dose on day 7 was 4.1 mg/day (SD 3.4 median 4 range 0-46 mg). 24 patients reported ≥1 harms (32.4% CI 22.6% to 44.1% insomnia n=10, depression n=7, euphoria n=7 and hyperglycaemia n=7). Of 24 patients with no benefit, 10 reported ≥1 harms. This study shows positive and negative effects of 7 days of dexamethasone as an appetite stimulant in patients with advanced life-limiting illnesses. Identifying clinicodemographic characteristics of people most at risk of harms with no benefit is a crucial next step. Longer term follow-up will help to understand longer term and cumulative harms.
Publisher: Routledge
Date: 26-07-2019
Publisher: SAGE Publications
Date: 15-09-2022
DOI: 10.1177/02692163221122326
Abstract: Paracentesis is commonly undertaken in patients with cancer-related ascites. To systematically investigate the symptomatic benefits and harms experienced by patients with cancer undergoing paracentesis using real-world data in the palliative care setting. Prospective, multisite, observational, consecutive cohort study. Benefits and harms of paracentesis were assessed between 01/07/2018 and 31/02/2021 as part of routine clinical assessments by treating clinicians at four timepoints: (T0) before paracentesis (T1) once drainage ceased (T2) 24 h after T1 and (T3) 28 days after T1 or next paracentesis, if sooner. Data were collected from 11 participating sites across five countries (Australia, England, Hong Kong, Malaysia and New Zealand) on 111 patients undergoing paracentesis via a temporary (73%) or indwelling (21%) catheter: 51% male, median age 69 years, Australia-modified Karnofsky Performance Score 50. At T1 ( n = 100), symptoms had improved for most patients (81%), specifically abdominal distension (61%), abdominal pain (49%) and nausea (27%), with two-thirds experiencing improvement in ⩾2 symptoms. In the remaining patients, symptoms were unchanged (7%) or worse (12%). At least one harm occurred in 32% of patients, the most common being an ascitic leak ( n = 14). By T3, 89% of patients had experienced some benefit and 36% some harm, including four patients who experienced serious harm, one of which was a fatal bowel perforation. Most patients obtained rapid benefits from paracentesis. Harms were less frequent and generally mild, but occasionally serious and fatal. Our findings help inform clinician-patient discussions about the potential outcomes of paracentesis in this frail population.
Publisher: SAGE Publications
Date: 09-09-2022
DOI: 10.1177/08258597221121453
Abstract: Objective: To ascertain palliative physicians’ and consultation-liaison psychiatrists’ perceptions of depression care processes in patients with very poor prognoses, exploring key challenges and postulating solutions. Methods: A qualitative focus group study involving three 1-h online focus groups (2 palliative medicine and 1 psychiatry) were conducted between November-December 2020. Fellows and trainees were recruited from Australian and New Zealand Society of Palliative Medicine (n = 11) and Royal Australian and New Zealand College of Psychiatrists (n = 4). Data underwent conventional qualitative content analysis. Results: Participants perceived depression care to be complex and challenging. Perceived barriers included: inadequate palliative care psychiatry skills with variation in clinical approaches lack of supportive health infrastructure (poor access to required interventions and suboptimal linkage between palliative care and psychiatry) lack of research support and societal stigma. Suggested solutions included integrating care processes between palliative care and psychiatry to improve clinician training, establish supportive health systems and promote innovative research designs. Conclusions: Developing clinician training, supportive health systems and innovative research strategies centering on integrating palliative care and psychiatry care processes may be integral to optimising depression care when providing care to people with very poor prognoses.
Publisher: BMJ
Date: 12-11-2019
DOI: 10.1136/BMJSPCARE-2019-002009
Abstract: We aimed to identify and evaluate: (1) treatment-emergent adverse events (TEAE (worse or new since baseline)) and the subgroup of severe TEAEs in a placebo-controlled 7-day randomised trial of regular, low-dose, sustained-release oral morphine for chronic breathlessness and (2) clinical characteristics associated with TEAE. Safety analysis of trial data. Adults with chronic breathlessness (modified Medical Research Council breathlessness score ≥2) due to heart or lung disease, or cancer, not on regular opioids were eligible. Symptoms associated with opioids (TEAE of special interest) were systematically sought using Common Terminology Criteria for Adverse Events (CTCAE) grading. Other harms could be reported at any time. The relationship between characteristics and presence of ≥1 TEAE of special interest was explored using univariable logistic regression analyses. 1449/5624 (26%) Adverse Events from 279 participants were TEAE of which 150/1449 (10%) were severe (CTCAE grades 3–5). 1086/5624 (75%) were events of special interest of which 41/1086 (4%) were severe. Compared with placebo, morphine was not associated with more TEAE or severe TEAE of special interest (TEAE: OR 0.53, 95% CI 0.21 to 1.38, p=0.20 severe TEAE: OR 0.96, 95% CI 0.27 to 3.41, p=0.95) nor with CTCAE severity grade (χ 2 =4.39, p=0.50). Among the 26/150 (17%) with severe TEAEs, study withdrawal was more common in the morphine arm (18/26 (69%) morphine arm 8/26 (30%) placebo arm). None of the severe TEAEs was a respiratory harm. Severe morphine-associated toxicity was uncommon and not associated with study arm. Clinical consequences were minor and self-limiting. ACTRN126000806268.
Publisher: Public Library of Science (PLoS)
Date: 09-03-2015
Publisher: Wiley
Date: 04-2013
DOI: 10.1111/IMJ.12051
Publisher: SAGE Publications
Date: 31-03-2022
DOI: 10.1177/02692163221083437
Abstract: Anorexia (loss of appetite) is a prevalent and distressing symptom in people with cancer, with limited effective interventions. Medicinal cannabis has shown promise in improving appetite-related symptoms in people with cancer. To assess the efficacy of medicinal cannabis for improving appetite-related symptoms in people with cancer, considering measures and outcomes, interventions and toxicity. Systematic review with narrative approach to synthesis and meta-analysis. Databases (MEDLINE, CINAHL, CENTRAL), websites and trials registries were searched from inception to February 2021. Included studies were randomised controlled trials (RCT) in English peer-reviewed journals comparing medicinal cannabis with placebo and/or another intervention. Study quality was assessed using the Cochrane risk of bias tool. Five studies were included that compared medicinal cannabis interventions (dronabinol, nabilone and cannabis extract) either with placebo ( n = 4) or megestrol acetate ( n = 1). Measures and trial endpoints varied, but efficacy was demonstrated in one trial only, in which dronabinol significantly improved chemosensory perception and other secondary outcomes (taste of food, premeal appetite, proportion of calories consumed as protein) compared with placebo. Cannabis interventions were generally well tolerated across studies, regardless of the product or dose, although the comprehensive measurement of toxicities was limited. Evidence from RCTs that medicinal cannabis increases appetite in people with cancer is limited. Measures, outcomes and interventions were variable, and toxicities have not been comprehensively evaluated. Future research should carefully consider biological mechanisms to guide more nuanced selection of endpoints and interventions, including product, dose and administration.
Publisher: SAGE Publications
Date: 10-04-2022
DOI: 10.1177/02692163221085855
Abstract: Real-world effectiveness of interventions in palliative care need to be systematically quantified to inform patient/clinical decisions. Neuropathic pain is prevalent and difficult to palliate. Tricyclic antidepressants have an established role for some neuropathic pain aetiologies, but this is less clear in palliative care. To describe the real-world use and outcomes from amitriptyline An international, prospective, consecutive cohort post-marketing hase IV harmacovigilance/quality improvement study of palliative care patients with neuropathic pain where the treating clinician had already made the decision to use a tricyclic antidepressant. Data were entered at set times: baseline, and days 7 and 14. Likert scales graded benefits and harms. Twenty-one sites (inpatient, outpatient, community) participated in six countries between June 2016 and March 2019. Patients had clinician-diagnosed neuropathic pain. One hundred and fifty patients were prescribed amitriptyline (110) Benefits favoured amitriptyline while harms were similar for both medications.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 08-2023
DOI: 10.1097/NJH.0000000000000841
Abstract: Palliative Extended and Care at Home (PEACH) is a rapid response nurse-led package of care mobilized for palliative care patients who have an expressed preference to die at home. This study aimed to identify the demographic and clinical predictors of home death for patients receiving the package. Deidentified data were used from administrative and clinical information systems. Univariate and multivariate analyses were conducted to assess association of sociodemographic factors with mode of separation. Furthermore, 1754 clients received the PEACH package during the study period. Mode of separation was home death (75.7%), hospital alliative care unit admission (13.5%), and alive/discharged from the PEACH Program (10.8%). Of participants with clear preference to die at home, 79% met their wish. Multivariate analysis demonstrated cancer diagnosis, patients who wished to be admitted when death was imminent, and patients with undecided preference for location of death were associated with an increased likelihood of being admitted to the hospital. Compared with those with spousal caregivers, those cared for by their child/grandchild and other nonspouse caregivers were significantly associated with a decreased likelihood of being admitted to the hospital alliative care unit. Our results show that opportunities to tailor home care based on referral characteristics to meet patient preference to die at home, at in idual, system, and policy levels, exist.
Publisher: Elsevier BV
Date: 04-2023
DOI: 10.1016/J.JGO.2022.10.002
Abstract: There is an increasing incidence of cancer in older people, but limited data on radiotherapy uptake, and in particular, radiotherapy utilisation (RTU) rates. The RTU rate for older adults with cancer may be lower than recommended due to lower tolerance for radiotherapy as well as additional comorbidities, reduced life expectancy and travel for treatment. Radiotherapy use must be aligned with best available, age-specific evidence to ensure older adults with cancer receive optimal benefit without harms. A systematic review was conducted to synthesise the published data on the actual RTU rate for patients with cancer as a function of age. MEDLINE and EMBASE were systematically searched to identify relevant population-based and hospital-based cohort studies on radiotherapy utilisation for all age groups, published in English, from 1 January 1990 to 1 July 2020. We focused on the following common cancers in older adults for which radiotherapy is recommended: breast, prostate, lung, rectal cancer, glioblastoma multiforme (GBM), and cervical cancer. Age-specific radiotherapy utilisation data were extracted and analysed as a narrative synthesis. From 2606 studies screened, 75 cohort and population-based studies were identified with age-specific radiotherapy utilisation data. The total number of patients in the 75 studies was 4,792,138. The RTU rate decreased with increasing age for all tumour sites analysed, except for patients receiving curative radiotherapy as definitive treatment for prostate or cervical cancer. This reduction with increasing age was demonstrated in both palliative and curative settings. There is a global reduction in radiotherapy utilisation with increasing age for most tumour sites. The reduction in delivery of radiotherapy warrants further examination and evidence-based guidelines specific to this population.
Publisher: Mary Ann Liebert Inc
Date: 03-2019
Abstract: Internationally, use of lidocaine infusions to treat cancer pain varies by center. Existing systematic reviews do not adequately inform use of lidocaine in cancer pain. To assess the effects of systemic sodium channel blockers on cancer pain in adults, review the dose protocols for administration, and assess toxicity. Databases CENTRAL, MEDLINE, Embase, LILACS, CareSearch, and OpenGrey were searched from inception to 2016. Conference abstracts and reference lists were handsearched, and the lead investigators of included trials and Australian manufacturers were contacted. Included studies were randomized controlled trials evaluating one or more of lidocaine via intravenous or subcutaneous route, or mexiletine, flecainide, or tocainide via oral route delivered at a site distant to the pain locus. The methodological quality of studies was assessed using the "risk of bias" domain-based evaluation by Jadad. Protocol is available on PROSPERO:CRD42016047092. One positive (n = 50) and three negative (n = 10 each) crossover trials evaluated lidocaine versus placebo, and one trial (n = 16) compared lidocaine with dexmedetomidine. Meta-analysis of pooled data in 60 patients demonstrated a significant benefit of lidocaine infusion of 4-5 mg/kg over 30-80 minutes compared with placebo for >50% reduction in cancer pain. Secondary outcomes did not show a significant difference. Based on the current available evidence, lidocaine infusion could be considered in refractory cancer pain where agents with level 1 evidence are ineffective. Further research is necessary to understand the protocol and population in which lidocaine may improve cancer pain and capitalize on the promising opportunities identified.
Publisher: Springer International Publishing
Date: 14-11-2018
Publisher: Research Square Platform LLC
Date: 02-06-2023
DOI: 10.21203/RS.3.RS-3007373/V1
Abstract: Background: Pancreatic cancer is relatively rare and aggressive, with digestion and malabsorption issues often leading to significant weight loss. Recruitment of people with this malignancy into studies can be challenging and innovative methods need to be explored to improve recruitment rates. Objective: To describe a mixed media methodology and the outcomes utilised to recruit patients to participate in a survey in a binational survey. Setting: people with pancreatic cancer residing in Aotearoa New Zealand and Australia Methods: The details of the mixed media method utilised to identify and recruit people with pancreatic cancer are described. This method was used to investigate pancreatic enzyme replacement therapy use in people with pancreatic cancer across Australia and Aotearoa New Zealand. Results: The mixed media approach was successful in reaching 334 participants from a range of ethnicities and regions, representative of people with pancreatic cancer. Results showed that social media platforms were notably more efficient and cost-effective than radio and newspaper, but required additional expertise, including graphic design and media strategy knowledge. Conclusions: Social media is an effective and efficient method of recruiting people with pancreatic cancer to a national survey. Studies utilising media to recruit patients may need to include team members with a range of skills.
Publisher: BMJ
Date: 17-02-2023
DOI: 10.1136/SPCARE-2022-004119
Abstract: Symptoms of raised intracranial pressure (ICP) in recurrent high-grade glioma (HGG) generally require corticosteroid treatment, often causing toxicity with variable effects on ICP symptoms. Acetazolamide reduces ICP when used in other clinical non-cancer settings. The aim of the study was to explore whether the addition of oral acetazolamide enables safe dexamethasone dose reduction in management of raised ICP in recurrent HGG. Participants had recurrent HGG with any of dexamethasone recommencement, dose increase or dependency prior/current bevacizumab was an exclusion. Eligible participants were randomised 1:1 to acetazolamide or placebo for 8 weeks. Standardised protocols were used for dexamethasone dosing, with planned dose decrease from day 5 once ICP symptoms were stable. The primary endpoint was a composite of dexamethasone dose reduction and stable Karnofsky Performance Status Secondary endpoints included toxicity and feasibility. Thirty participants (15 per group) were enrolled (mean age 58 years) from seven Australian sites. The mean baseline dexamethasone dose was 6.2 mg. Mean duration on study treatment was 38 days (placebo group) and 31 days (acetazolamide group) with nine participants (30%) completing all study treatments (six placebo, three acetazolamide). Study withdrawal was due to adverse events (n=6 one placebo, five acetazolamide) and disease progression (n=6 (three per arm)). Four participants (13%) (two per arm) were stable responders. Ten participants experienced a total of 13 serious adverse events (acetazolamide arm: five participants (33%), six events, two related). The study closed early due to poor accrual and increasing availability of bevacizumab. The addition of acetazolamide did not facilitate dexamethasone reduction. ACTRN12615001072505.
Publisher: Elsevier BV
Date: 11-2021
Publisher: Springer International Publishing
Date: 2018
Publisher: Springer Science and Business Media LLC
Date: 02-2011
DOI: 10.1007/BF03256842
Publisher: Oxford University Press (OUP)
Date: 24-01-2020
DOI: 10.1002/BJS.11422
Abstract: Ileus is common after colorectal surgery and is associated with an increased risk of postoperative complications. Identifying features of normal bowel recovery and the appropriateness for hospital discharge is challenging. This study explored the safety of hospital discharge before the return of bowel function. A prospective, multicentre cohort study was undertaken across an international collaborative network. Adult patients undergoing elective colorectal resection between January and April 2018 were included. The main outcome of interest was readmission to hospital within 30 days of surgery. The impact of discharge timing according to the return of bowel function was explored using multivariable regression analysis. Other outcomes were postoperative complications within 30 days of surgery, measured using the Clavien–Dindo classification system. A total of 3288 patients were included in the analysis, of whom 301 (9·2 per cent) were discharged before the return of bowel function. The median duration of hospital stay for patients discharged before and after return of bowel function was 5 (i.q.r. 4–7) and 7 (6–8) days respectively (P & 0·001). There were no significant differences in rates of readmission between these groups (6·6 versus 8·0 per cent P = 0·499), and this remained the case after multivariable adjustment for baseline differences (odds ratio 0·90, 95 per cent c.i. 0·55 to 1·46 P = 0·659). Rates of postoperative complications were also similar in those discharged before versus after return of bowel function (minor: 34·7 versus 39·5 per cent major 3·3 versus 3·4 per cent P = 0·110). Discharge before return of bowel function after elective colorectal surgery appears to be safe in appropriately selected patients.
Publisher: SAGE Publications
Date: 09-09-2012
Abstract: Delirium has a significant impact on nursing practice from diagnosis and management, with under-detection and variable management of delirium being international problems. This study aimed to explore nurses’ assessment and management of delirium when caring for people with cancer, the elderly or older people requiring psychiatric care in the inpatient setting. Participants in this qualitative study were nurses working in Australian public hospital inpatient dedicated units in palliative care, aged care (geriatrics), aged care (geriatric) psychiatry and oncology. Semi-structured interviews were used to explore nurses’ views about specific areas of delirium assessment and management. Purposive s ling was used and interviews conducted until thematic saturation reached. A thematic content analysis was performed from a grounded theory perspective. A total of 40 participants were included in the study. The analysis revealed four broad analytical themes: (1) superficial recognition and understanding of the operational definition of delirium or recognition of delirium as a syndrome (2) nursing assessment: investigative versus a problem solving approach (3) management: maintaining dignity and minimizing chaos and (4) distress and the effect on others. Nurses have limited knowledge of the features of delirium regardless of their specialty discipline. Delirium was uniformly identified as a highly distressing experience for patients, families and staff alike. The majority of nurses had a superficial understanding of delirium management, and adopted a task-orientated approach aimed at addressing the more noticeable problems. These findings have implications for both education and knowledge translation. Innovative approaches are needed to align health professional behaviours with best evidence delirium care.
Publisher: BMJ
Date: 03-2017
Publisher: Springer Science and Business Media LLC
Date: 31-05-2016
Publisher: Springer Science and Business Media LLC
Date: 02-01-2021
Publisher: Mary Ann Liebert Inc
Date: 12-2020
Publisher: Mary Ann Liebert Inc
Date: 09-2014
Abstract: Nausea can be a debilitating symptom for patients with a life-limiting illness. While addressing reversible components, nonpharmacological strategies and antiemetics are the main therapeutic option. The choice of medication, dose, and route of administration remain highly variable. The aim of this study was to codify the current clinical approaches and quantify any variation found nationally. A cross-sectional study utilizing a survey of palliative medicine clinicians examined prescribing preferences for nausea using a clinical vignette. Respondent characteristics, the use of nonpharmacological interventions, first- and second-line antiemetic choices, commencing and maximal dose, and time to review were collected. Responding clinicians were predominantly working in palliative medicine across a range of settings with a 49% response rate (105/213). The main nonpharmacological recommendation was "small, frequent snacks." Metoclopramide was the predominant first-line agent (69%), followed by haloperidol (26%), while second-line haloperidol was the predominant agent (47%), with wide variation in other nominated agents. Respondents favoring metoclopramide as first-line tended to use haloperidol second-line (65%), but not vice versa. Maximal doses for an in idual antiemetic varied up to tenfold. For nausea, a commonly encountered symptom in palliative care, clinicians' favored metoclopramide and haloperidol however, after these choices, there was large variation in antiemetic selection. While most clinicians recommended modifying meal size and frequency, use of other nonpharmacological therapies was limited.
Publisher: Elsevier BV
Date: 05-2022
Publisher: Elsevier BV
Date: 04-2019
Publisher: Elsevier BV
Date: 03-2020
DOI: 10.1016/J.JPAINSYMMAN.2019.10.026
Abstract: Minimizing bias in randomized controlled trials (RCTs) includes intention-to-treat analyses. Hospice alliative care RCTs are constrained by high attrition unpredictable when consenting, including withdrawals between randomization and first exposure to the intervention. Such withdrawals may systematically bias findings away from the new intervention being evaluated if they are considered nonresponders. This study aimed to quantify the impact within intention-to-treat principles. A theoretical model was developed to assess the impact of withdrawals between randomization and first exposure on study power and effect sizes. Ten reported hospice alliative care studies had power recalculated accounting for such withdrawal. In the theoretical model, when 5% of withdrawals occurred between randomization and first exposure to the intervention, change in power was demonstrated in binary outcomes (2.0%-2.2%), continuous outcomes (0.8%-2.0%), and time-to-event outcomes (1.6%-2.0%), and odds ratios were changed by 0.06-0.17. Greater power loss was observed with larger effect sizes. Withdrawal rates were 0.9%-10% in the 10 reported RCTs, corresponding to power losses of 0.1%-2.2%. For studies with binary outcomes, withdrawal rates were 0.3%-1.2% changing odds ratios by 0.01-0.22. If blinding is maintained and all interventions are available simultaneously, our model suggests that excluding data from withdrawals between randomization and first exposure to the intervention minimizes one bias. This is the safety population as defined by the International Committee on Harmonization. When planning for future trials, minimizing the time between randomization and first exposure to the intervention will minimize the problem. Power should be calculated on people who receive the intervention.
Publisher: Mary Ann Liebert Inc
Date: 2018
Abstract: Haloperidol is widely prescribed as an antiemetic in patients receiving palliative care, but there is limited evidence to support and refine its use. To explore the immediate and short-term net clinical effects of haloperidol when treating nausea and/or vomiting in palliative care patients. A prospective, multicenter, consecutive case series. Twenty-two sites, five countries: consultative, ambulatory, and inpatient services. When haloperidol was started in routine care as an antiemetic, data were collected at three time points: baseline 48 hours (benefits) day seven (harms). Clinical effects were assessed using the National Cancer Institute's Common Terminology Criteria for Adverse Events (NCI CTCAE). Data were collected (May 2014-March 2016) from 150 patients: 61% male 86% with cancer mean age 72 (standard deviation 11) years and median Australian-modified Karnofsky Performance Scale 50 (range 10-90). At baseline, nausea was moderate (88 62%) or severe (11 8%) 145 patients reported vomiting, with a baseline NCI CTCAE vomiting score of 1.0. The median (range) dose of haloperidol was 1.5 mg/24 hours (0.5-5 mg/24 hours) given orally or parenterally. Five patients (3%) died before further data collection. At 48 hours, 114 patients (79%) had complete resolution of their nausea and vomiting, with greater benefit seen in the resolution of nausea than vomiting. At day seven, 37 (26%) patients had a total of 62 mild/moderate harms including constipation 25 (40%) dry mouth 13 (21%) and somnolence 12 (19%). Haloperidol as an antiemetic provided rapid net clinical benefit with low-grade, short-term harms.
Publisher: Springer Science and Business Media LLC
Date: 26-03-2014
Publisher: Springer Science and Business Media LLC
Date: 23-01-2021
DOI: 10.1186/S12904-021-00715-4
Abstract: A primary brain cancer diagnosis is a distressing, life changing event. It adversely affects the quality of life for the person living with brain cancer and their families (‘carers’). Timely access to evidence-based information is critical to enabling people living with brain cancer, and their carers, to self-manage the devastating impacts of this disease. A systematic environmental scan of web-based resources. A depersonalised search for online English-language resources published from 2009 to December 2019 and designed for adults ( 25 years of age), living with primary brain cancer, was undertaken using the Google search engine. The online information was classified according to: 1) the step on the cancer care continuum 2) self-management domains (PRISMS taxonomy) 3) basic information disclosure (Silberg criteria) 4) independent quality verification (HonCode) 5) reliability of disease and treatment information (DISCERN Sections 1 and 2) and readability (Flesch-Kincaid reading grade). A total of 119 online resources were identified, most originating in England ( n = 49) Australia ( n = 27) or the USA ( n = 27). The majority of resources related to active treatment ( n = 76), without addressing recurrence ( n = 3), survivorship ( n = 1) or palliative care needs ( n = 13). Few online resources directly provided self-management advice for adults living with brain cancer or their carers. Just over a fifth ( n = 26, 22%) were underpinned by verifiable evidence. Only one quarter of organisations producing resources were HonCode certified ( n = 9, 24%). The median resource reliability as measured by Section 1, DISCERN tool, was 56%. A median of 8.8 years of education was required to understand these online resources. More targeted online information is needed to provide people affected by brain cancer with practical self-management advice. Resources need to better address patient and carer needs related to: rehabilitation, managing behavioural changes, survivorship and living with uncertainty recurrence and transition to palliative care. Developing online resources that don’t require a high level of literacy and/or cognition are also required.
Publisher: Oxford University Press (OUP)
Date: 15-03-2017
Publisher: Elsevier BV
Date: 06-2020
Publisher: American Society of Clinical Oncology (ASCO)
Date: 04-2013
Publisher: BMJ
Date: 09-2017
DOI: 10.1136/BMJOPEN-2017-016371
Abstract: Delirium is a common, serious and potentially preventable condition with devastating impact on the quality of life prompting a proliferation of interventional trials. Core outcome sets aim to standardise outcome reporting by identifying outcomes perceived fundamental for measurement in trials of a specific interest area. Our aim is to develop international consensus on two core outcome sets for trials of interventions to prevent and/or treat delirium, irrespective of study population. We aim to identify additional core outcomes specific to the critically ill, acutely hospitalised patients, palliative care and older adults. We will conduct a systematic review of published and ongoing delirium trials (1980 onwards) and one-on-one interviews of patients who have experienced delirium and family members. These data will inform Delphi round 1 of a two-stage consensus process. In round 2, we will provide participants their own response, summarised group responses and those of patient/family participants for rescoring. We will randomise participants to receive feedback as proportion scoring the outcome as critical or as group mean responses. We will hold a consensus meeting using nominal group technique to finalise outcomes for inclusion. We will repeat the Delphi process and consensus meeting to select measures for each core outcome. We will recruit 240 Delphi participants giving us 80% power to detect a 1.0–1.5 point (9-point scale) difference by feedback method between rounds. We will analyse differences for subsequent scores, magnitude of opinion change, items retained and level of agreement. We are obtaining research ethics approvals according to local governance. Participation will be voluntary and data deidentified. Support from three international delirium organisations will be instrumental in dissemination and core outcome set uptake. We will disseminate through peer-reviewed open access publications and present at conferences selected to reach a wide range of knowledge users.
Publisher: Springer Science and Business Media LLC
Date: 21-12-2020
Publisher: Springer Science and Business Media LLC
Date: 27-05-2011
DOI: 10.1007/S00520-011-1176-Y
Abstract: The purpose of this study is to review the literature examining how the beliefs and behaviours of physicians and patients influence clinical communication, doctor-patient interaction and treatment decisions for lung cancer treatment. Literature was obtained via electronic database searches and hand searching of journals from 1990 to 2011. Wide variability in perceptions of the value of chemotherapy in lung cancer is present among both physicians and patients. There is a mismatch in the degree patients and physicians weigh survival, such that patients value survival benefits highly whilst physicians strongly emphasize toxicity and associated symptoms. This lack of congruence between patients and clinicians is influenced by a range of factors and has implications for treatment decisions, long-term survival and quality of life in people affected by lung cancer. The ergence of treatment priorities indicates a need for improved communication strategies addressing the needs and concerns of both patients and clinicians. Patients should understand the benefits and risks of treatment options, while clinicians can gain a greater awareness of factors influencing patients' decisions on treatments. Reflecting these perspectives and patient preferences for lung cancer treatment in clinical guidelines may improve clinician awareness.
Publisher: BMJ
Date: 20-06-2013
DOI: 10.1136/BMJSPCARE-2012-000361
Abstract: The aim of this study was to evaluate the cost-effectiveness of a home-based palliative care model relative to usual care in expediting discharge or enabling patients to remain at home. Economic evaluation of a pilot randomised controlled trial with 28 days follow-up. Mean costs and effectiveness were calculated for the Palliative Care Extended Packages at Home (PEACH) and usual care arms including: days at home place of death PEACH intervention costs specialist palliative care service use acute hospital and palliative care unit inpatient stays and outpatient visits. PEACH mean intervention costs per patient ($3489) were largely offset by lower mean inpatient care costs ($2450) and in this arm, participants were at home for one additional day on average. Consequently, PEACH is cost-effective relative to usual care when the threshold value for one extra day at home exceeds $1068, or $2547 if only within-study days of hospital admission are costed. All estimates are high uncertainty. The results of this small pilot study point to the potential of PEACH as a cost-effective end-of-life care model relative to usual care. Findings support the feasibility of conducting a definitive, fully powered study with longer follow-up and comprehensive economic evaluation.
Publisher: Springer International Publishing
Date: 2018
Publisher: BMJ
Date: 08-11-2018
DOI: 10.1136/BMJSPCARE-2018-001578
Abstract: Use of palliative care in hospitals for people at end of life varies. We examined rate and time of in-hospital palliative care use and associated interhospital variations. We used admissions from all hospitals in New South Wales, Australia, within a 12-month period, for a cohort of adults who died in 73 public acute care hospitals between July 2010 and June 2014. Receiving palliative care and its timing were based on recorded use. Among 90 696 adults who died, 27% received palliative care, and the care was initiated 7.6 days (mean SD: 3.3 days) before death. Over the 5-year period, the palliative care rate rose by 58%, varying extent across chronic conditions. The duration of palliative care before death declined by 7%. Patient (demographics, morbidities and service use) and hospital factors (size, location and availability of palliative care unit) explained half of the interhospital variation in outcomes: adjusted IQR in rate and duration of palliative care among hospitals were 23%–39% and 5.2–8.7 days, respectively. Hospitals with higher rates often initiated palliative care earlier (correlation: 0.39 p .01). Despite an increase over time in the palliative care rate, its initiation was late and of brief duration. Palliative care use was associated with patient and hospital characteristics however, half of the between hospital variation remained unexplained. The observed suboptimal practices and variability indicate the need for expanded and standardised use of palliative care supported by assessment tools, service enhancement and protocols.
Publisher: Cambridge University Press (CUP)
Date: 21-12-2018
DOI: 10.1017/S1478951517000979
Abstract: The working ages (25–65 years) are a period when most people have significant work, financial, and family responsibilities. A small proportion of working age people will face an expected premature death from cancer or other life-limiting illness. Understanding the impact an expected premature death has on this population is important for informing support. The current study set out to summarize research describing the effects that facing an expected premature death has on employment, financial, and lifestyle of working age people and their families. A systematic review using narrative synthesis approach. Four electronic databases were searched in July 2016 for peer-reviewed, English language studies focusing on the financial, employment, and lifestyle concerns of working age adults living with an advanced life-limiting illness and/or their carers and/or children. Fifteen quantitative and 12 qualitative studies were included. Two-thirds ( n = 18) were focused on cancer. All studies identified adverse effects on workforce participation, finances, and lifestyle. Many patients were forced to work less or give up work/retire early because of symptoms and reduced functioning. In addition to treatment costs, patients and families were also faced with child care, travel, and home/car modification costs. Being younger was associated with greater employment and financial burden, whereas having children was associated with lower functional well-being. Changes in family roles were identified as challenging regardless of diagnosis, whereas maintaining normalcy and creating stability was seen as a priority by parents with advanced cancer. This review is limited by the smaller number of studies focussing on the needs of working age people with nonmalignant disease. Working age people facing an expected premature death and their families have significant unmet financial, employment, and lifestyle needs. Comparing and contrasting their severity, timing, and priority for people with nonmalignant conditions is required to better understand their unique needs.
Publisher: Elsevier BV
Date: 05-2023
Publisher: Springer Science and Business Media LLC
Date: 10-08-2013
DOI: 10.1007/S00520-013-1921-5
Abstract: The Leeds Assessment of Neuropathic Symptoms and Signs (LANSS) scale was developed to differentiate pain of predominantly neuropathic or nociceptive origin. The aim of this study was to determine whether the LANSS scale was an appropriate tool to classify pain in a trial of patients with advanced cancer and chronic refractory pain. Clinician assessment of pain type (neuropathic or nociceptive) was used to determine the sensitivity and specificity of LANSS scores in 112 trial participants. Those classified as "mixed" or of uncertain aetiology were excluded. We undertook several analyses in an attempt to improve the LANSS scale and better diagnose pain type for our specific dataset. There was strong association between the LANSS score and a diagnosis of neuropathic versus nociceptive pain, p < 0.001. When the clinical assessment was compared with the LANSS scale, the overall accuracy was 94 % (79/84). The 5 false negatives and no false positives resulted in a sensitivity of 0.86 (0.70, 0.95), specificity of 1 (0.93, 1), positive predictive value of 1 (0.88, 1) and negative predictive value of 0.91 (0.80, 0.97). The negative likelihood ratio was 0.14 (0, 0.32). The scale had good discriminant and construct validity. Reliability was assessed via internal consistency with Cronbach's α = 0.76, similar to that of the original validation study (α = 0.74). None of the new scales developed was better at differentiating pain type. The LANSS scale predicted well for pain type in a cancer population and is a useful tool for classifying pain in cancer pain trials.
Publisher: Wiley
Date: 03-10-2016
Abstract: The first evidence-based Clinical Practice Guidelines and Principles of Care for People with Dementia in Australia have been released. The Guidelines detail a number of important evidence-based recommendations for occupational therapists. The aim of this paper is (1) to provide an overview of Guideline development, and (2) to describe the evidence supporting a recommendation for occupational therapy. Common characteristics of effective occupational therapy programmes for people with dementia are described. Guideline development involved adaptation of existing high-quality guidelines developed overseas and 17 systematic reviews to ensure that the most recent high-quality evidence was included. One of the systematic reviews involved examining the evidence for interventions to promote independence in people with dementia. Specifically, we looked at the evidence for occupational therapy and its effect on activities of daily living, quality of life and carer impact. A total of 109 recommendations are included in the Guidelines. Occupational therapy was found to significantly increase independence in activities of daily living and improve quality of life. Effective occupational therapy programmes involve: environmental assessment, problem solving strategies, carer education and interactive carer skills training. Occupational therapists working with people with dementia in community settings should ensure that their time is spent on those aspects of intervention that are shown to be effective.
Publisher: Springer Science and Business Media LLC
Date: 14-01-2020
DOI: 10.1007/S00228-019-02820-Z
Abstract: This study aimed to explore medication-related decision-making by health professionals from different disciplines and specialties caring for people with advanced dementia living in long-term care facilities, focusing on dilemmas associated with starting, continuing or deprescribing medications commonly regarded as potentially inappropriate. Four focus groups were undertaken, each on a different medication type (antibiotics, lipid-lowering agents, opioids and acetylcholinesterase inhibitors). Transcripts underwent qualitative analysis using line by line inductive coding and then a person-centred framework to highlight themes across medication types. Sixteen participants participated in focus groups. Regardless of medication type or dilemma, results suggested decision-making for residents with advanced dementia should begin with discussing goals of care and engaging with families, and be viewed as an iterative process involving regular monitoring and adjustment. Decision-making was seen as requiring a dialectical approach involving multiple perspectives, with an emphasis on establishing communication between health professionals, family and the person with dementia to better understand goals references for care. Inter-professional collaboration enables sharing of clinical experience/expertise, differing disciplinary perspectives and knowledge about the resident. Continuing a medication should be considered an active decision that carries as much responsibility as starting or deprescribing.
Publisher: Wiley
Date: 23-09-2021
DOI: 10.1111/AJAG.12843
Publisher: AMPCo
Date: 03-2010
Publisher: Springer Science and Business Media LLC
Date: 28-02-2020
Publisher: SAGE Publications
Date: 2008
Abstract: Background: In palliative care, the target population (all people with life-limiting illnesses and their family/caregivers) and the complexity of their needs from diagnosis to bereavement should define the subpopulation who access specialist palliative care services (SPCS). Have caregivers of patients who have not accessed SPCS had their needs met?Methods: As part of a broader state-wide randomized face-to-face population health survey over six years (18 224 interviews, 71% response), questions were asked of people bereaved in the previous five years when someone close to them died an `expected' death (39% of respondents). Questions included respondent demographics, the diagnosis of the deceased and, for one year, whether SPCS was of benefit (if used) or needed (if not used). Differential uptake rates were calculated for diagnosis, income, country of birth and age and 2 × 2 tables reflecting the accuracy of match of service with caregiver needs were generated for each group (accuracy = true positives + true negatives/total) *100.Results: Uptake of SPCS was significantly lower in people with a non-cancer diagnosis (40% versus 62% P = 0.0001), lower income (56% versus 61% P = 0.0006) and people born where English was not the first language (52% versus 58% P = 0.0096). The only subgroup where the accuracy of matching between palliative care service uptake and identified needs was lower than the overall average (83%) was where cancer was not the life-limiting illness (69% cancer 86%).Discussion: SPCS under utilization has previously been described in the population subgroups explored in this study and assumed to equal unmet needs and poorer outcomes. Caregiver responses suggest that, except for people with a non-cancer diagnosis, lack of service uptake may not represent unmet needs. These results are limited to people with caregivers. Palliative Medicine 2008 : 43—50
Publisher: BMJ
Date: 26-09-2020
DOI: 10.1136/THORAXJNL-2019-213681
Abstract: Morphine may decrease the intensity of chronic breathlessness but data from a large randomised controlled trial (RCT) are lacking. This first, large, parallel-group trial aimed to test the efficacy and safety of regular, low-dose, sustained-release (SR) morphine compared with placebo for chronic breathlessness. Multisite (14 inpatient and outpatient cardiorespiratory and palliative care services in Australia), parallel-arm, double-blind RCT. Adults with chronic breathlessness (modified Medical Research Council≥2) were randomised to 20 mg daily oral SR morphine and laxative (intervention) or placebo and placebo laxative (control) for 7 days. Both groups could take ≤6 doses of 2.5 mg, ‘ as needed ’, immediate-release morphine (≤15 mg/24 hours) as required by the ethics review board. The primary endpoint was change from baseline in intensity of breathlessness now (0–100 mm visual analogue scale two times per day diary) between groups. Secondary endpoints included: worst , best and average breathlessness unpleasantness of breathlessness now , fatigue quality of life function and harms. Analysed by intention-to-treat, 284 participants were randomised to morphine (n=145) or placebo (n=139). There was no difference between arms for the primary endpoint (mean difference −0.15 mm (95% CI −4.59 to 4.29 p=0.95)), nor secondary endpoints. The placebo group used more doses of oral morphine solution during the treatment period (mean 8.7 vs 5.8 doses p=0.001). The morphine group had more constipation and nausea/vomiting. There were no cases of respiratory depression nor obtundation. No differences were observed between arms for breathlessness, but the intervention arm used less rescue immediate-release morphine. ACTRN12609000806268.
Publisher: Elsevier BV
Date: 10-2014
DOI: 10.1016/J.IJNURSTU.2014.02.005
Abstract: Delirium is prevalent in palliative care inpatient settings and management is often challenging. Despite nurses' integral patient care role, little is known about palliative care nurses' capacity to recognise, assess and respond to patients' delirium symptoms. To explore the experiences, views and practices of inpatient palliative care nurses in delirium recognition and assessment. 30 nurses from nine Australian specialist palliative care inpatient services. Critical incident technique (CIT) guided a series of semi-structured interviews. Prior to interviews participants were given a vignette of a palliative care inpatient with an unrecognised hypoactive delirium, to prompt their recollection and recounting of a similar clinical incident. Clearly recalled and described incidents were analysed using thematic content analysis. 20 of 30 participants recalled and described 28 relevant delirium incidents. Two themes and six sub-themes provide a general description of participants' experiences, views and practice in delirium recognition and assessment. Participants experience distress related to caring for patients with delirium and express compassion and empathy for delirious patients. Enhancing their delirium knowledge, strengthening collaborative multidisciplinary team relationships and better communication are important supports. Some participants, usually those in advance practice roles, describe more comprehensive assessment capabilities that incorporate clinical expertise with whole person awareness, yet systematic and structured delirium screening and assessment processes and application of the delirium diagnosis criteria are largely missing. Use of ambiguous terminology to describe delirium symptoms contributes to ineffective practice. The findings of this study expands our understanding of how palliative care nurses' capacity to recognise and assess patients' delirium symptoms in the inpatient setting could be strengthened.
Publisher: Scientific Scholar
Date: 2011
Publisher: Elsevier BV
Date: 04-2016
DOI: 10.1016/J.JPAINSYMMAN.2015.11.021
Abstract: Managing symptom clusters or multiple concurrent symptoms in patients with advanced cancer remains a clinical challenge. The optimal processes constituting effective management of symptom clusters remain uncertain. To describe the attitudes and strategies of clinicians in managing multiple co-occurring symptoms in patients with advanced cancer. Semistructured interviews were conducted with 48 clinicians (palliative care physicians [n = 10], oncologists [n = 6], general practitioners [n = 6], nurses [n = 12], and allied health providers [n = 14]), purposively recruited from two acute hospitals, two palliative care centers, and four community general practices in Sydney, Australia. Transcripts were analyzed using thematic analysis and adapted grounded theory. Six themes were identified: uncertainty in decision making (inadequacy of scientific evidence, relying on experiential knowledge, and pressure to optimize care) attunement to patient and family (sensitivity to multiple cues, prioritizing in idual preferences, addressing psychosocial and physical interactions, and opening Pandora's box) deciphering cause to guide intervention (disaggregating symptoms and interactions, flexibility in assessment, and curtailing investigative intrusiveness) balancing complexities in medical management (trading off side effects, minimizing mismatched goals, and urgency in resolving severe symptoms) fostering hope and empowerment (allaying fear of the unknown, encouraging meaning making, ch ioning patient empowerment, and truth telling) and depending on multidisciplinary expertise (maximizing knowledge exchange, sharing management responsibility, contending with hierarchical tensions, and isolation and discontinuity of care). Management of symptom clusters, as both an art and a science, is currently fraught with uncertainty in decision making. Strengthening multidisciplinary collaboration, continuity of care, more pragmatic planning of clinical trials to address more than one symptom, and training in symptom cluster management are required.
Publisher: Oxford University Press (OUP)
Date: 29-11-2020
DOI: 10.1093/NOP/NPAA081
Abstract: Sleep is an important element in health-related quality of life of cancer patients and caregivers. This study aimed to explore the experience of sleep disturbance in people with malignant brain tumors (BT) and their family caregivers. Participants were recruited from ambulatory neuro-oncology clinics. Semi-structured interviews were conducted with 24 patients (67% with high-grade gliomas) and 14 caregivers. Data were analyzed thematically using a framework synthesis. We identified six themes relating to perceptions of the nature, impact, causal factors, and interventions for sleep disturbance, beliefs about sleep and impact, and personal coping strategies. Participants described their sleep disturbance in terms of insomnia symptoms most commonly difficulties initiating and maintaining sleep. Participants had varied views on causal factors including the BT diagnosis and treatment and caregiver burden. However, excessive thinking and BT-related anxiety were evident in both patients and caregivers. The described impact on daytime functioning due to non-restful sleep and fatigue appeared to be significant and many participants needed daytime naps, although they understated the impact on in idual functioning. Some participants were reluctant to seek help from clinicians for sleep disturbance due to previous experiences where sleep disturbance was overlooked, or because they held negative views toward pharmacological interventions. Participants reported various coping strategies, ranging from relaxation-promoting techniques to behaviors to distract thinking at night that may instead disturb sleep. Psychological factors contribute to sleep disturbance in patients with BT and caregivers. This population may benefit from information about sleep disturbance and interventions targeting anxiety.
Publisher: AMPCo
Date: 13-05-2020
DOI: 10.5694/MJA2.50607
Publisher: Oxford University Press (OUP)
Date: 31-08-2020
Abstract: Human research ethics statements support the equitable inclusion of erse groups. Yet older people are underrepresented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify the perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. Scoping review of the literature and online sources in January–February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. From 4,171 database records and 93 online resources, 22 articles (2000–2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods, and foci, with hypothetical scenarios, quantitative analyses, and examination of proxy consent predominating. Participants (N = 7,331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%), and older persons with dementia/cognitive impairment (6%). Synthesis identified 2 themes: willingness to participate and decision-making approaches. Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons’ and caregivers’ perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media.
Publisher: Springer Science and Business Media LLC
Date: 14-01-2020
Publisher: European Respiratory Society
Date: 04-09-2022
Publisher: Oxford University Press (OUP)
Date: 26-07-2019
Abstract: The purpose of this systematic review was to (a) examine the effects of interventions delivered by a heart failure professional for mild cognitive impairment and dementia on cognitive function, memory, working memory, instrumental activities of daily living, heart failure knowledge, self-care, quality of life and depression and (b) identify the successful elements of these strategies for heart failure patients with mild cognitive impairment or dementia. During March 2018, an electronic search of databases including CINAHL, MEDLINE, EMBASE and PsycINFO was conducted. All randomised controlled trials, which examined an intervention strategy to help heart failure patients with mild cognitive impairment or dementia cope with self-care, were included. An initial search yielded 1622 citations, six studies were included ( N= 595 participants, mean age 68 years). There were no significant improvements in cognitive function and depression. However, significant improvements were seen in memory ( p=0.015), working memory ( p=0.029) and instrumental activities of daily living ( p=0.006). Nurse led interventions improved the patient’s heart failure knowledge ( p=0.001), self-care ( p .05) and quality of life ( p=0.029). Key elements of these interventions include brain exercises, for ex le, syllable stacks, in idualised assessment and customised education, personalised self-care schedule development, interactive problem-solving training on scenarios and association techniques to prompt self-care activities. Modest evidence for nurse led interventions among heart failure patients with mild cognitive impairment or dementia was identified. These results must be interpreted with caution in light of the limited number of available included studies.
Publisher: Elsevier BV
Date: 09-2022
Publisher: American Society of Clinical Oncology (ASCO)
Date: 20-03-2020
DOI: 10.1200/JCO.18.02235
Abstract: Patient-defined factors that are important at the end of life include being physically independent for as long as possible, good symptom control, and spending quality time with friends and family. Hospice care adds to the quality of care and these patient-centered priorities for people with cancer and their families in the last weeks and days of life. Evidence from large observational studies demonstrate that hospice care can improve outcomes directly and support better and more appropriate health care use for people in the last stages of cancer. Team-based community hospice care has measurable benefits for patients, their family caregivers, and health services. In addition to improved symptom control for patients and a greater likelihood of time spent at home, caregiver outcomes are better when hospice care is accessed: informational needs are better met, and caregivers have an improved ability to move on with life after the patient’s death compared with people who did not have access to these services. Hospice care continues to evolve as its reach expands and the needs of patients continue to broaden. This is reflected in the transition from hospice being based on excellence in nursing to teams with a broad range of health professionals to meet the complex and changing needs of patients and their families. Additional integration of cancer services with hospice care will help to provide more seamless care for patients and supporting family caregivers during their caregiving and after the death of the patient.
Publisher: Wiley
Date: 21-01-2016
DOI: 10.1111/AJCO.12450
Abstract: Overall 5-year survival for pancreatic cancer is ∼5%. Optimizing the care that pancreatic cancer patients receive may be one way of improving outcomes. The objective of this study was to establish components of care which Australian health professionals believe important to optimally manage patients with pancreatic cancer. Using a Delphi process, a multidisciplinary panel of 250 health professionals were invited to provide a list of factors they considered important for optimal care of pancreatic cancer patients. They were then asked to score and then rescore (from one [no importance/disagree] to 10 [very important/agree]) the factors. The mean and coefficient of variation scores were calculated and categorized into three levels of importance. Overall, 63 (66% of those sent the final questionnaire 25% of those initially invited) health professionals from nine disciplines completed the final scoring of 55 statements/factors encompassing themes of presentation/staging, surgery and biliary obstruction, multidisciplinary team details and oncology. Mean scores ranged from 3.7 to 9.7 with the highest related to communication and patient assessment. There was substantial intra- and interdisciplinary variation in views about MDT membership and roles. Overall, the opinions of Australian health professionals reflect international guideline recommended care however, they identified a number of additional factors focusing on where patients should be treated, the importance of clear communication and the need for multidisciplinary care which were not included in current clinical practice guidelines. Differences in priorities between specialty groups were also identified.
Publisher: Elsevier BV
Date: 09-2008
DOI: 10.1016/J.JPSYCHORES.2008.05.018
Abstract: The objective of this study is to provide an expert review of delirium in the context of palliative care. Based on a primary selection criterion, firstly, studies were included for review if the population studied either had a diagnosis of advanced cancer or was receiving palliative care alternatively, in the absence of data derived from these populations, studies conducted in other populations were included. Secondly, from the studies meeting the primary selection criterion, we selected those that examined specific standard outcome measures. Thirdly, we selected studies and literature reviews that identified delirium research issues. Delirium occurs commonly in the context of palliative care where it is likely to cause heightened distress for patients, carers, and families alike, and make interpretation of pain and other symptoms extremely difficult. There is a profound dearth of rigorous studies on delirium in this setting. Ambiguous terminology, varying definitions in internationally recognized classification systems, and failure to use validated assessment tools lead to wide-ranging incidence and prevalence of delirium episodes in such populations. Episodes are usually multifactorial in origin and may portend poor prognosis by preceding death in many cases. Despite this, many are often at least partially reversible with relatively low-burden interventions. The patient's disease status, previous quality of life, and prior expressed wishes regarding goals of care should all be taken into account. Antipsychotics are the pharmacotherapeutic agents most commonly used to control symptoms despite limited evidence either supporting their efficacy or examining their adverse event profile. Often, symptomatic control alone is indicated. In cases with refractory symptoms, deeper or "palliative" sedation may be required. Further research is needed regarding delirium recognition, phenomenology, the development of low-burden instruments for assessment, family education, predictive models for reversibility, and evidence-based guidelines on the appropriate use of palliative sedation.
Publisher: SAGE Publications
Date: 24-07-2015
Abstract: There is limited research into the role of occupational therapy in discharge planning in palliative care. This study aimed to explore patients’ and caregivers’ perceptions of occupational therapy in the context of discharge home from an inpatient palliative care setting. Semi-structured interviews were conducted with patients and caregivers following discharge home from inpatient palliative care. Participants were selected using purposive s ling and data was thematically analysed. Five caregivers and three patients were interviewed. Three main themes emerged: (1) shared roles in discharge planning (2) perceived benefits of occupational therapy and (3) adapting to discharge home. Patients and caregivers viewed occupational therapy as the practical help needed to achieve discharge. They had difficulty differentiating between professional roles and perceived the discharge process as a shared responsibility between themselves and the clinicians. Adapting to discharge home involved coping with the uncertain and unexpected, where limited understanding of professional roles meant participants did not know who to seek assistance from. Occupational therapy was viewed as the practical help needed for discharge home from a palliative care setting. Clinicians need to take primary responsibility for understanding each other’s roles and providing information on who can assist after discharge.
Publisher: Oxford University Press (OUP)
Date: 19-02-2019
DOI: 10.1093/NOP/NPZ005
Abstract: 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. 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. 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. 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.
Publisher: SAGE Publications
Date: 11-08-2022
DOI: 10.1177/02692163221113163
Abstract: Theory-based and qualitative evaluations in pilot trials of complex clinical interventions help to understand quantitative results, as well as inform the feasibility and design of subsequent effectiveness and implementation trials. To explore patient, family, clinician and volunteer ('stakeholder') perspectives of the feasibility and acceptability of a multicomponent non-pharmacological delirium prevention intervention for adult patients with advanced cancer in four Australian palliative care units that participated in a phase II trial, the 'PRESERVE pilot study'. A trial-embedded qualitative study via semi-structured interviews and directed content analysis using Michie's Behaviour Change Wheel and the Theoretical Domains Framework. Thirty-nine people involved in the trial: nurses ( Participants' perspectives aligned with the 'capability', 'opportunity' and 'motivation' domains of the applied frameworks. Of seven themes, three were around the alignment of the delirium prevention intervention with palliative care (intervention was considered routine care intervention aligned with the compassionate and collaborative culture of palliative care and differing views of palliative care priorities influenced perspectives of the intervention) and four were about study processes more directly related to adherence to the intervention (shared knowledge increased engagement with the intervention impact of the intervention checklist on attention, delivery and documentation of the delirium prevention strategies clinical roles and responsibilities and addressing environmental barriers to delirium prevention). This theory-informed qualitative study identified multiple influences on the delivery and documentation of a pilot multicomponent non-pharmacological delirium prevention intervention in four palliative care units. Findings inform future definitive studies of delirium prevention in palliative care.
Publisher: Elsevier BV
Date: 06-2022
Publisher: Oxford University Press (OUP)
Date: 02-10-2023
Publisher: American Society of Clinical Oncology (ASCO)
Date: 06-2014
Abstract: Multiple systematic reviews and meta-analyses have identified the effectiveness of patient education in improving cancer pain management. However, the mechanisms by which patient education improves pain outcomes are uncertain, as are the optimal delivery, content, timing, frequency, and duration. This review provides best-bet recommendations based on available evidence to guide service managers and clinicians in developing a patient education program. We used patient-centered care, self-management, coaching, and a behavior change wheel as lenses through which to consider the evidence for elements of patient education most likely to be effective within the context of other strategies for overcoming barriers to cancer pain assessment and management. The evidence suggests that optimal strategies include those that are patient-centered and tailored to in idual needs, are embedded within health professional–patient communication and therapeutic relationships, empower patients to self-manage and coordinate their care, and are routinely integrated into standard cancer care. An approach that integrates patient education with processes and systems to ensure implementation of key standards for pain assessment and management and education of health professionals has been shown to be most effective. Patient education is effective in reducing cancer pain and should be standard practice in all settings. For optimal results, patient education should be integrated with other strategies for implementing evidence-based, person-centered care and overcoming barriers at the levels of patient, provider, and health system.
Publisher: BMJ
Date: 02-2023
DOI: 10.1136/BMJOPEN-2022-066125
Abstract: Many patients experience unrelieved neuropathic cancer-related pain. Most current analgesic therapies have psychoactive side effects, lack efficacy data for this indication and have potential medication-related harms. The local anaesthetic lidocaine (lignocaine) has the potential to help manage neuropathic cancer-related pain when administered as an extended, continuous subcutaneous infusion. Data support lidocaine as a promising, safe agent in this setting, warranting further evaluation in robust, randomised controlled trials. This protocol describes the design of a pilot study to evaluate this intervention and explains the pharmacokinetic, efficacy and adverse effects evidence informing the design. A mixed-methods pilot study will determine the feasibility of an international first, definitive phase III trial to evaluate the efficacy and safety of an extended continuous subcutaneous infusion of lidocaine for neuropathic cancer-related pain. This study will comprise: a phase II double-blind randomised controlled parallel-group pilot of subcutaneous infusion of lidocaine hydrochloride 10% w/v (3000 mg/30 mL) or placebo (sodium chloride 0.9%) over 72 hours for neuropathic cancer-related pain, a pharmacokinetic substudy and a qualitative substudy of patients’ and carers’ experiences. The pilot study will provide important safety data and help inform the methodology of a definitive trial, including testing proposed recruitment strategy, randomisation, outcome measures and patients’ acceptability of the methodology, as well as providing a signal of whether this area should be further investigated. Participant safety is paramount and standardised assessments for adverse effects are built into the trial protocol. Findings will be published in a peer-reviewed journal and presented at conferences. This study will be considered suitable to progress to a phase III study if there is a completion rate where the CI includes 80% and excludes 60%. The protocol and Patient Information and Consent Form have been approved by Sydney Local Health District (Concord) Human Research Ethics Committee 2019/ETH07984 and University of Technology Sydney ETH17-1820. ANZCTR ACTRN12617000747325.
Publisher: Elsevier BV
Date: 2021
Publisher: Springer Science and Business Media LLC
Date: 18-06-2021
DOI: 10.1186/S12916-021-02015-3
Abstract: Trials of interventions to prevent or treat delirium in adults in an acute hospital setting report heterogeneous outcomes. Our objective was to develop international consensus among key stakeholders for a core outcome set (COS) for future trials of interventions to prevent and/or treat delirium in adults with an acute care hospital admission and not admitted to an intensive care unit. A rigorous COS development process was used including a systematic review, qualitative interviews, modified Delphi consensus process, and in-person consensus using nominal group technique (registration www.comet - tudies/details/796 ). Participants in qualitative interviews were delirium survivors or family members. Participants in consensus methods comprised international representatives from three stakeholder groups: researchers, clinicians, and delirium survivors and family members. Item generation identified 8 delirium-specific outcomes and 71 other outcomes from 183 studies, and 30 outcomes from 18 qualitative interviews, including 2 that were not extracted from the systematic review. De-duplication of outcomes and formal consensus processes involving 110 experts including researchers (N = 32), clinicians (N = 63), and delirium survivors and family members (N = 15) resulted in a COS comprising 6 outcomes: delirium occurrence and reoccurrence, delirium severity, delirium duration, cognition, emotional distress, and health-related quality of life. Study limitations included exclusion of non-English studies and stakeholders and small representation of delirium survivors/family at the in-person consensus meeting. This COS, endorsed by the American and Australian Delirium Societies and European Delirium Association, is recommended for future clinical trials evaluating delirium prevention or treatment interventions in adults presenting to an acute care hospital and not admitted to an intensive care unit.
Publisher: SAGE Publications
Date: 13-10-2009
Abstract: Patients with advanced cancer often have complex care needs requiring collaboration between medical oncology and palliative care providers. Little is known about how effective and acceptable such collaboration is to medical oncologists. Attitudes of Australian medical oncologists toward collaboration with specialist palliative care services were investigated using a Web-based survey. Descriptive statistics and attitude indices were calculated and a thematic content analysis performed. One hundred and fifteen respondents (78 medical oncologists, 37 trainees) completed the survey (response rate 30.3%). Positive attitudes toward specialist palliative care involvement were expressed with most respondents preferring concurrent rather than sequential models of care (94.8%, n = 109). Reported barriers to collaboration included reluctance for referral by patients (minor 60.9%, n = 70 major 8.7%, n = 10) or families (minor 67%, n = 77 major 7%, n = 8), a lack of inpatient beds (minor 27%, n = 31 major 34.8%, n = 40) and inadequate resources for specialist palliative care to take some referrals (minor 30.4%, n = 35 major 30.4%, n = 35). There was no difference in attitude indices for those who had completed a palliative care rotation during their training (33%, n = 38) and those who had not. Suggestions for improvement in collaboration focused around four areas — improved resources, improved multidisciplinary links, mutual respect and understanding, and consistency in service provision. This study is the first to specifically investigate the views of Australian medical oncologists toward collaboration with specialist palliative care. While positive attitudes have been expressed, identified barriers to collaboration need attention.
Publisher: BMJ
Date: 04-03-2019
DOI: 10.1136/BMJSPCARE-2018-001586
Abstract: Delirium is common in palliative care settings. Management includes detection, treatment of cause(s), non-pharmacological interventions and family support strategies which are supported with varying levels of evidence. Emerging evidence suggests that antipsychotic use should be minimised in managing mild to moderate severity delirium, but the integration of this evidence into clinical practice is unknown. A 21-question online anonymous survey was emailed to Association for Palliative Medicine members in current clinical practice (n=859), asking about delirium assessment, management and research priorities. Response rate was 39%: 70% of respondents were palliative medicine consultants. Delirium guidelines were used by some: 42% used local guidelines but 38% used none. On inpatient admission, 59% never use a delirium screening tool. Respondents would use non-pharmacological interventions to manage delirium, either alone (39%) or with an antipsychotic (58%). Most respondents (91%) would prescribe an antipsychotic and 6% a benzodiazepine, for distressing hallucinations unresponsive to non-pharmacological measures. Inpatient (57%) and community teams (60%) do not formally support family carers. Research priorities were delirium prevention, management and prediction of reversibility. This survey of UK and Irish Palliative Medicine specialists shows that delirium screening at inpatient admission is suboptimal. Most specialists continue to use antipsychotics in combination with non-pharmacological interventions to manage delirium. More support for family carers should be routinely provided by clinical teams. Further rigorously designed clinical trials are urgently needed in view of management variability, emerging evidence and perceived priorities for research.
Publisher: Wiley
Date: 29-10-2020
DOI: 10.1111/AJO.13270
Publisher: SAGE Publications
Date: 07-11-2019
Abstract: The concept of moral distress comes from nursing ethics, and was initially defined as ‘…when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action’. There is a large body of literature associated with moral distress, yet multiple definitions now exist, significantly limiting its usefulness. We undertook a systematic review of the argument-based bioethics literature on this topic as the basis for a critical appraisal, identifying 55 papers for analysis. We found that moral distress is most frequently framed around in idual experiences of distress in relation to local practices and constraints, and understood in terms of power relations and workplace hierarchies. This understanding is directly derived from, and often still seen as specific to, nursing. Frequently the perspective of the morally distressed in idual is privileged. Understandings of moral distress have evolved towards an ‘occupational health approach’, with the assumption that moral distress should be measured and prevented. Counter-perspectives were identified, highlighting conceptual problems. Based on our review, we propose a redefinition of moral distress: ‘Ethical unease or disquiet resulting from a situation where a clinician believes they have contributed to avoidable patient or community harm through their involvement in an action, inaction or decision that conflicts with their own values’. This definition is specific enough for research use, anchored in clinicians’ professional responsibilities and concerns about harms to patients, framed relationally rather than hierarchically, and amenable to multiple perspectives on any given morally distressing situation.
Publisher: BMJ
Date: 02-2022
DOI: 10.1136/BMJOPEN-2021-050182
Abstract: Management of neuropathic cancer pain (NCP) refractory to regular opioids remains an important challenge. The efficacy of pregabalin for NCP except chemotherapy-induced peripheral neuropathy (CIPN) has already been confirmed in two randomised controlled trials (RCTs) compared with placebo. Duloxetine offers the potential of analgesia in opioid refractory NCP. However, there are no RCT of duloxetine for the management of opioid-refractory NCP as a first line treatment. Both classes of drugs have the potential to reduce NCP, but there has been no head-to-head comparison for the efficacy and safety, especially given differing side effect profiles. An international, multicentre, double-blind, dose increment, parallel-arm, RCT is planned. Inclusion criteria include: adults with cancer experiencing NCP refractory to opioids Brief Pain Inventory (BPI)-item 3 (worst pain) of ≥4 Neuropathic Pain on the Leeds Assessment of Neuropathic Symptoms and Signs Pain Scale of ≥12 despite of an adequate trial of regular opioid medication (≥60 mg/day oral morphine equivalent dose). Patients with CIPN are excluded. The study will recruit from palliative care teams (both inpatients and outpatients) in Japan and Australia. Participants will be randomised (1:1 allocation ratio) to duloxetine or pregabalin arm. Dose escalation is until day 14 and from day 14 to 21 is a dose de-escalation period to avoid withdrawal effects. The primary endpoint is defined as the mean difference in BPI item 3 for worst pain intensity over the previous 24 hours at day 14 between groups. A s le size of 160 patients will be enrolled between February 2020 and March 2023. Ethics approval was obtained at Osaka City University Hospital Certified Review Board and South Western Sydney Local Health District Human Research Ethics Committee. The results of this study will be submitted for publication in international journals and the key findings presented at international conferences. jRCTs051190097, ACTRN12620000656932.
Publisher: SAGE Publications
Date: 15-08-2012
Abstract: Rigorous clinical research in palliative care is challenging but achievable. Trial participants are likely to have deteriorating performance status, co-morbidities and progressive disease. It is difficult to recruit patients, and attrition unrelated to the intervention being trialled is high. The aim of this paper is to highlight practical considerations from a forum held to discuss these issues by active palliative care clinical researchers. To date, the Australian Palliative Care Clinical Studies Collaborative (PaCCSC) has randomized more than 500 participants across 12 sites in 8 Phase III studies. Insights from the 2010 clinical research forum of the PaCCSC are reported. All active Australian researchers in palliative care were invited to present their current research and address three specific questions: (1) What has worked well? (2) What didn’t work well? and (3) How should the research be done differently next time? Fourteen studies were presented, including six double-blind, randomized, controlled, multi-site trials run by the PaCCSC. Key recommendations are reported, including guidance on design methodologies and strategies for maximizing recruitment and retention. These recommendations will help to inform future trial design and conduct in palliative care.
Publisher: Elsevier BV
Date: 08-2023
Publisher: BMJ
Date: 10-07-2014
DOI: 10.1136/BMJSPCARE-2013-000588
Abstract: Although palliative care is an important public healthcare issue worldwide, the current situation in the Asia-Pacific region has not been systematically evaluated. This survey aimed to clarify the current status of palliative care in the Asia-Pacific region. Questionnaires were sent to a representative physician of each member country/region of the Asia Pacific Hospice Palliative Care Network (APHN). The questionnaire examined palliative care service provision, information regarding physician certification in palliative care, the availability of essential drugs for palliative care listed by the International Association for Hospice and Palliative Care (IAHPC) and the regulation of opioid-prescribing practice. Of the 14 member countries/regions of the APHN, 12 (86%) responded. Some form of specialist palliative care services had developed in all the responding countries/regions. Eight member countries/regions had physician certifications for palliative care. Most essential drugs for palliative care listed by the IAHPC were available, whereas hydromorphone, oxycodone and transmucosal fentanyl were unavailable in most countries/regions. Six member countries/regions required permission to prescribe and receive opioids. The development of palliative care is in different stages across the surveyed countries/regions in the Asia-Pacific region. Data from this survey can be used as baseline data for monitoring the development of palliative care in this region.
Publisher: Springer Science and Business Media LLC
Date: 16-11-2022
DOI: 10.1186/S12877-022-03534-1
Abstract: Dementia is a leading cause of death in developed nations. Despite an often distressing and symptom laden end of life, there are systematic barriers to accessing palliative care in older people dying of dementia. Evidence exists that 70% of people living with severe dementia attend an emergency department (ED) in their last year of life. The aim of this trial is to test whether a Carer End of Life Planning Intervention (CELPI), co-designed by consumers, clinicians and content specialists, improves access to end of life care for older people with severe dementia, using an ED visit as a catalyst for recognising unmet needs and specialist palliative care referral where indicated. A randomised controlled trial (RCT) enrolling at six EDs across three states in Australia will be conducted, enrolling four hundred and forty dyads comprising a person with severe dementia aged ≥ 65 years, and their primary carer. Participants will be randomly allocated to CELPI or the control group. CELPI incorporates a structured carer needs assessment and referral to specialist palliative care services where indicated by patient symptom burden and needs assessment. The primary outcome measure is death of the person with dementia in the carer-nominated preferred location. Secondary outcomes include carer reported quality of life of the person dying of dementia, hospital bed day occupancy in the last 12 months of life, and carer stress. An economic evaluation from the perspective of a health funder will be conducted. CELPI seeks to support carers and provide optimal end of life care for the person dying of dementia. This trial will provide high level evidence as to the clinical and cost effectiveness of this intervention. ACTRN12622000611729 registered 22/04/2022.
Publisher: Oxford University Press (OUP)
Date: 02-2022
Abstract: Prognostic uncertainty and the need for proxy decision-making owing to cognitive impairment in advanced dementia, adds complexity to end-of-life care planning within the long-term care setting. Case conferences provide a structure to facilitate difficult conversations and an opportunity for family and clinicians to engage in prospective planning, and reach agreement on goals of end-of-life care. To explore interactions between multidisciplinary healthcare clinicians and families during facilitated case conferences on end-of-life care for residents with advanced dementia. A qualitative approach was used. Transcripts of audio-recorded case conferences facilitated by a trained registered nurse were coded by two independent researchers and analysed inductively. Transcripts were selected from an available pool until thematic saturation was reached. Emerging themes were confirmed with the wider research group. Thematic saturation was reached after 25 transcripts. An overarching theme concerned the ways in which clinicians and families bridged medical and person-centred perspectives. Subthemes included: details of day-to-day care versus establishing overall goals of care expression of emotion versus retreat from emotion and missed opportunities versus expressed cues. Successful facilitation served to ‘bridge the gap’ between family and clinicians. Facilitation of case conferences for residents with advanced dementia should focus on ensuring that: clinicians do not miss opportunities to discuss end-of-life care discussions on the minutiae of care regularly return to the resident’s broader goals of care and information on dementia and treatments provided by clinicians is integrated with advice by family members regarding the resident’s premorbid values and likely preferences.
Publisher: Elsevier BV
Date: 08-2014
Publisher: SAGE Publications
Date: 2008
Publisher: Wiley
Date: 04-06-2023
Abstract: Providing optimal support for carers of people with advanced cancer is critical to facilitating discharge home from hospital. Carer Support Needs Assessment Tool–Intervention (CSNAT‐I) has shown promise in supporting carers' needs in this context. This study aimed to explore patient and carers experiences with and views on the acceptability of the CSNAT‐I delivered by occupational therapists in an acute oncology setting. People with advanced cancer and their carers who had previously received the CSNAT‐I as part of usual care while admitted to an Australian specialist cancer centre or acute hospital were invited to participate in interviews exploring their perceptions of the intervention. Data were analysed thematically. Two patients and 10 carers participated in semi‐structured interviews. Three themes were constructed from the data: Carers viewed the CSNAT‐I as comprehensive process that (1) ‘covered everything’ related to discharge planning (2) generated an ‘increased awareness of needs’ for themselves, patients, and clinicians and (3) triggered an emotional response of feeling ‘wrapped up in care’ that was maintained as they moved from hospital to home. This study has demonstrated that the CSNAT‐I was highly acceptable to carers as part of existing discharge processes supporting them through the transition from hospital to home and can be delivered by occupational therapists and other clinicians with a natural synergy to discharge planning. These findings will inform further development and testing of the delivery model of the CSNAT‐I in future trials.
Publisher: Mary Ann Liebert Inc
Date: 31-12-2021
Publisher: Springer International Publishing
Date: 2019
Publisher: Springer International Publishing
Date: 2019
Publisher: Research Square Platform LLC
Date: 03-04-2020
Abstract: Background Delirium is a serious and distressing neurocognitive disorder of physiological aetiology that is common in advanced cancer. Understanding of delirium pathophysiology is largely hypothetical, with some evidence for involvement of inflammatory systems, neurotransmitter alterations and glucose metabolism. To date, there has been limited empirical consideration of the distinction between delirium pathophysiology and that of the underlying disease, for ex le, cancer where these mechanisms are also common in advanced cancer syndromes such as pain and fatigue. This systematic review explores biomarker overlap in delirium, specific advanced cancer-related syndromes and prediction of cancer prognosis. Methods A systematic literature search was conducted, using MEDLINE, PubMed, Embase, CINAHL, CENTRAL and Web of Science, to identify body fluid biomarkers in delirium, cancer prognosis and advanced cancer-related syndromes of interest. Studies were excluded if they reported delirium tremens only did not measure delirium using a validated tool the s le had less than 75% of participants with advanced cancer measured tissue, genetic or animal biomarkers, or were conducted post-mortem. Articles were screened for inclusion independently by two authors, and data extraction and an in-depth quality assessment conducted by one author, and checked by two others. Results The 151 included studies were conducted in erse settings in 32 countries between 1985 and 2017, involving 28130 participants with a mean age of 69.3 years. Seventy-one studies investigated delirium biomarkers, and 80 studies investigated biomarkers of an advanced cancer-related syndrome or cancer prognosis. Overall, 41 biomarkers were studied in relation to both delirium and either an advanced cancer-related syndrome or prognosis and of these, 24 biomarkers were positively associated with either delirium or advanced cancer syndromes rognosis in at least one study. The quality assessment showed large inconsistency in reporting. Conclusion There is considerable overlap in the biomarkers in delirium and advanced cancer-related syndromes. Improving the design of delirium biomarker studies and considering appropriate comparator/controls will help to better understanding the discrete pathophysiology of delirium in the context of co-existing illness.
Publisher: Research Square Platform LLC
Date: 15-11-2019
Abstract: Delirium is a serious and distressing neurocognitive disorder of physiological aetiology that is common in advanced cancer. Understanding of delirium pathophysiology is largely hypothetical, with some evidence for involvement of inflammatory systems, neurotransmitter alterations and glucose metabolism. To date, there has been limited empirical consideration of the distinction between delirium pathophysiology and that of the underlying disease, for ex le, cancer where these mechanisms are also common in advanced cancer syndromes such as pain and fatigue. This systematic review explores biomarker overlap in delirium, specific advanced cancer-related syndromes and prediction of cancer prognosis.Methods A systematic literature search was conducted, using MEDLINE, PubMed, Embase, CINAHL, CENTRAL and Web of Science, to identify body fluid biomarkers in delirium, cancer prognosis and advanced cancer-related syndromes of interest. Studies were excluded if they reported delirium tremens only did not measure delirium using a validated tool the s le had less than 75% of participants with advanced cancer measured tissue, genetic or animal biomarkers, or were conducted post-mortem. Articles were screened for inclusion independently by two authors, and data extraction and an in-depth quality assessment conducted by one author, and checked by two others.Results The 151 included studies were conducted in erse settings in 32 countries between 1985 and 2017, involving 28130 participants with a mean age of 69.3 years. Seventy-one studies investigated delirium biomarkers, and 80 studies investigated biomarkers of an advanced cancer-related syndrome or cancer prognosis. Overall, 41 biomarkers were studied in relation to both delirium and either an advanced cancer-related syndrome or prognosis and of these, 24 biomarkers were positively associated with either delirium or advanced cancer syndromes rognosis in at least one study. The quality assessment showed large inconsistency in reporting.Conclusion There is considerable overlap in the biomarkers in delirium and advanced cancer-related syndromes. Improving the design of delirium biomarker studies and considering appropriate comparator/controls will help to better understanding the discrete pathophysiology of delirium in the context of co-existing illness.
Publisher: Springer Science and Business Media LLC
Date: 12-05-2020
DOI: 10.1186/S12877-020-01575-Y
Abstract: Access to rehabilitation services for people living in residential care facilities is frequently limited. A randomised trial of a hospital outreach hip fracture rehabilitation program in residential care facilities has demonstrated improvements in mobility at four weeks and quality of life at 12 months but was not considered cost-effective by standard health economic metrics. The current study aimed to explore the general public’s views on issues involved in the allocation of rehabilitation resources for residents of care facilities. A citizens’ jury comprising 13 purposively s led members of the general public, representative of the South Australian age, gender and household income profile. The jury considered the questions “Should there be an investment of physical rehabilitation services in residential care for older people following a hip fracture? If so, what is the best way of providing this service (considering funding, models of service delivery and equity)?” Deliberations were in the context of a state-wide health reform program. The jury was conducted over two days with an experienced independent facilitator, addressing questions developed by a steering group of research academics and clinicians. The mean age of the citizens’ jury members was 43 (range 26 to 61). Eleven members voted for investment in outreach hospital rehabilitation services in residential aged care. All jurors agreed a number of strategies in addition to investment should be implemented, including health care planning and decision making, increased emphasis on hip fracture prevention, training of aged care staff in rehabilitation and routine provision of hospital discharge summaries to families. The jury further advocated for an increased focus on rehabilitation in residential care, potentially through accreditation criteria, increasing health literacy of residents and families, implementation of age friendly environment strategies and improving connections of care facilities with community, hospital and tertiary services. This citizens’ jury representative of the general public recommends that regardless of dementia and frailty, people who live in residential care and are walking and fracture their hips should have access to hospital outreach rehabilitation and recovery services.
Publisher: Research Square Platform LLC
Date: 17-09-2019
Abstract: Objective Delirium is a serious and distressing neurocognitive disorder of physiological aetiology that is common in advanced cancer. Understanding of delirium pathophysiology is largely hypothetical, with some evidence for involvement of inflammatory systems, neurotransmitter alterations and glucose metabolism. To date, there has been limited empirical consideration of the distinction between delirium pathophysiology and that of the underlying disease, for ex le, cancer where these mechanisms are also common in advanced cancer syndromes such as pain and fatigue. This systematic review explores biomarker overlap in delirium, specific advanced cancer-related syndromes and prediction of cancer prognosis. Methods A systematic literature search was conducted, using MEDLINE, PubMed, Embase, CINAHL, CENTRAL and Web of Science, to identify body fluid biomarkers in delirium, cancer prognosis and advanced cancer-related syndromes of interest. Studies were excluded if they reported delirium tremens only did not measure delirium using a validated tool the s le had less than 75% of participants with advanced cancer measured tissue, genetic or animal biomarkers, or were conducted post-mortem. Articles were screened for inclusion independently by two authors, and data extraction and an in-depth quality assessment conducted by one author, and checked by two others. Results The 151 included studies were conducted in erse settings in 32 countries between 1985 and 2017, involving 28130 participants with a mean age of 69.3 years. Seventy-one studies investigated delirium biomarkers, and 80 studies investigated biomarkers of an advanced cancer-related syndrome or cancer prognosis. Overall, 41 biomarkers were studied in relation to both delirium and either an advanced cancer-related syndrome or prognosis and of these, 24 biomarkers were positively associated with either delirium or advanced cancer syndromes rognosis in at least one study. The quality assessment showed large inconsistency in reporting. Conclusion There is considerable overlap in the biomarkers in delirium and advanced cancer-related syndromes. Improving the design of delirium biomarker studies and considering appropriate comparator/controls will help to better understanding the discrete pathophysiology of delirium in the context of co-existing illness.
Publisher: Elsevier BV
Date: 10-2014
Publisher: Mary Ann Liebert Inc
Date: 11-2017
Abstract: Medications for symptom management in palliative care have associated, but poorly understood, harms. Drug-related harms have important clinical implications, may impact on patients' compliance and contribute to symptoms. To explore the longitudinal relationship between oral morphine equivalent daily dose (MEDD) and oral diazepam equivalent daily dose (DEDD) with functional, cognitive, and symptom outcomes in patients receiving palliative care. Secondary longitudinal analysis of cancer decedents (n = 235) was carried out from a palliative care randomized controlled trial with multiple outcome measures. At each time point, MEDD and DEDD were calculated. Multilevel modeling was used to investigate independent associations between MEDD and DEDD, and cognitive and gastrointestinal symptoms, quality of life (QoL), performance status, and survival. Participants were recruited from a specialist palliative care program in southern Adelaide, were expected to live ≥48 hours, had pain in the previous 3 months, and a baseline Folstein Mini-Mental Status Examination score ≥25. Cognitive and gastrointestinal symptoms, performance status, and QoL worsened over time. In the adjusted multilevel analysis, statistically significant relationships remained between MEDD/DEDD and worsening performance status (p = 0.001), DEDD and gastrointestinal effects (p < 0.001), MEDD and QoL (p < 0.022). Commonly used palliative medications were associated with deteriorating performance status. The lack of association between MEDD with gastrointestinal or cognitive symptoms underlines that these associations are not inevitable with close attention. This analysis highlights the importance of including other medications as confounders when exploring medication-related harms. An understanding of the risk-benefit balance of medications is needed to maximize net benefits for patients.
Publisher: Mark Allen Group
Date: 06-2010
DOI: 10.12968/IJPN.2010.16.6.48829
Abstract: A wide range of services are provided to palliative care clients to alleviate pain and improve their quality of life. The purpose of this study was to explore the perceptions of clients and their carers regarding palliative care services in New South Wales, Austalia. Ten patients and their carers (n=7) were randomly selected from a s le of palliative care clients and were informed of the study and interviewed. Interview data were coded independently by three researchers and thematic analysis was undertaken. The themes identified were similar for both clients and carers and included: access to services service provision impact on way of life usefulness of services and staffing. An additional theme identified by clients was the burden of caregiving on carers. Knowledge of perceptions and concerns of client and carers is important to consider when planning palliative care services.
Publisher: SAGE Publications
Date: 17-09-2013
Abstract: Delirium is a serious neuropsychiatric syndrome frequently experienced by palliative care inpatients. This syndrome is under-recognized by clinicians. While screening increases recognition, it is not a routine practice. This systematic review aims to examine methods, quality, and results of delirium prevalence and incidence studies in palliative care inpatient populations and discuss implications for delirium screening. A systematic search of the literature identified prospective studies reporting on delirium prevalence and/or incidence in inpatient palliative care adult populations from 1980 to 2012. Papers not in English or those reporting the occurrence of symptoms not specifically identified as delirium were excluded. Of the eight included studies, the majority (98.9%) involved participants (1079) with advanced cancer. Eight different screening and assessment tools were used. Delirium incidence ranged from 3% to 45%, while delirium prevalence varied, with a range of: 13.3%–42.3% at admission, 26%–62% during admission, and increasing to 58.8%–88% in the weeks or hours preceding death. Studies that used the Diagnostic and Statistical Manual–Fourth Edition reported higher prevalence (42%–88%) and incidence (40.2%–45%), while incidence rates were higher in studies that screened participants at least daily (32.8%–45%). Hypoactive delirium was the most prevalent delirium subtype (68%–86% of cases). The prevalence and incidence of delirium in palliative care inpatient settings supports the need for screening. However, there is limited consensus on assessment measures or knowledge of implications of delirium screening for inpatients and families. Further research is required to develop standardized methods of delirium screening, assessment, and management that are acceptable to inpatients and families.
Publisher: Elsevier BV
Date: 10-2014
Publisher: BMJ
Date: 12-2017
DOI: 10.1136/BMJOPEN-2017-017536
Abstract: Breathlessness ‘crises’ in people with chronic respiratory conditions are a common precipitant for emergency department (ED) presentations, many of which might be avoided through improved self-management and support. This study sought insights from people with experience of ED ‘near misses’ where they considered going to the ED but successfully self-managed instead. A qualitative approach was used with a phenomenological orientation. Participants were eligible if they reported breathlessness on most days from a diagnosed respiratory condition and experience of ≥1 ED near miss. Recruitment was through respiratory support groups and pulmonary rehabilitation clinics. Semistructured interviews were conducted with each participant via telephone or face-to-face. Questions focused on ED-related decision-making, information finding, breathlessness management and support. This analysis used an integrative approach and independent coding by two researchers. Lazarus and Cohen’s Transactional Model of Stress and Coping informed interpretive themes. Interviews were conducted with 20 participants, 15 of whom had chronic obstructive pulmonary disease. Nineteen interviews were conducted via telephone. Analysis identified important factors in avoiding ED presentation to include perceived control over breathlessness, self-efficacy in coping with a crisis and desire not to be hospitalised. Effective coping strategies included: taking a project management approach that involved goal setting, monitoring and risk management managing the affective dimension of breathlessness separately from the sensory perceptual and building three-way partnerships with primary care and respiratory services. In addition to teaching non-pharmacological and pharmacological management of breathlessness, interventions should aim to develop patients’ generic self-management skills. Interventions to improve self-efficacy should ensure this is substantiated by transfer of skills and support, including knowledge about when ED presentation is necessary. Complementary initiatives are needed to improve coordinated, person-centred care. Future research should seek ways to break the cyclical relationship between affective and sensory-perceptual dimensions of breathlessness.
Publisher: European Delirium Association
Date: 19-07-2022
DOI: 10.56392/001C.36531
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 04-2023
Publisher: Public Library of Science (PLoS)
Date: 10-07-2019
Publisher: Elsevier BV
Date: 11-2020
Publisher: Cambridge University Press (CUP)
Date: 10-06-2019
DOI: 10.1017/S1478951519000257
Abstract: Advance care planning (ACP) is identified as being an important process for people with dementia. However, its efficacy for improving outcomes relevant for the in idual, carers and the health system has yet to be established. We conducted a systematic review with the aims of testing the efficacy of ACP for people with dementia and describing the settings and population in which it has been evaluated. A search was completed of electronic databases in August 2016. Articles were included if they described interventions aimed at increasing planning for future care of people with dementia, delivered to the person with dementia, their carers and/or health professionals. Of 4,772 articles returned by searches, 30 met the inclusion criteria, testing interventions in nursing home (n= 16) community (n = 10) and acute care (n = 4) settings. Only 18 interventions directly involved the person with dementia, with the remainder focusing on surrogate decision-makers. In all settings, interventions were found effective in increasing ACP practice. In nursing homes, ACP was found to influence care and increase the concordance between end of life wishes and care provided. Interventions in the community were found to improve patient quality of life but were not shown to influence concordance. Future research should focus on ways to involve people with dementia in decision-making through supported means.
Publisher: Elsevier BV
Date: 04-2010
DOI: 10.1016/J.JPAINSYMMAN.2009.09.017
Abstract: Breathlessness reportedly worsens as death approaches for many people, but the differences in intensity and time course between underlying causes are not well described. To determine differences in the intensity of breathlessness by diagnosis over time as death approaches in a consecutive cohort seen by a specialist palliative care service. Patients referred to Silver Chain Hospice Care Service over a period of four years (January 2004 to December 2007) had dyspnea evaluated at every clinical encounter until death. A numeric rating scale (NRS) was used to measure the intensity. Patients were categorized into five clusters (lung cancer, secondary cancer to lung, heart failure, end-stage pulmonary disease, and no identifiable cardiorespiratory cause) at three time points (60-53 [T(3)], 30-23 [T(2)], and 7-0 [T(1)] days before death [T(0)]). Group differences were assessed using analysis of variance. Joinpoint regression models defined significant changes in mean breathlessness intensity. For 5,862 patients, data were collected an average of 20 times (median: 13 116,982 data points) for an average of 86 days (median: 48). Breathlessness was significantly higher at all three time points in people with noncancer diagnoses. Breathlessness increased significantly at days 10 and 3 before death for people with cancer (P 7 out of 10) increased from 10% to 26%. Prevalence of breathlessness increases rapidly at life's end, especially for people with primary lung cancer the levels of breathlessness became close to those experienced by people with noncancer diagnoses despite symptom control measures.
Publisher: Elsevier BV
Date: 12-2015
DOI: 10.1016/J.COLEGN.2014.07.001
Abstract: Models of palliative care need to address the unmet needs of children, young people and families. To undertake an integrative review to identify the key elements of optimal paediatric palliative care from the perspectives of children and young people with palliative care needs and their parents. Electronic databases including CINAHL, Medline, PsycINFO and AMED searched using combined terms for palliative care, service models and children along with reference lists of included studies. Peer reviewed empirical studies reporting on evaluation of paediatric palliative care by children and young people with palliative care needs (0-19 years), or their families, published in English, between 2000 and 2013. The views of health professionals and grey literature were excluded. Quality appraisal completed by two researchers, consensus reached following discussion. Data extracted by two researchers, entered into an electronic proforma and synthesised using a narrative approach. Seven studies were identified of which two were quantitative, one was qualitative and four were mixed methods. Synthesis highlighted the need for tailored support enabling flexibility in care, with specific reference to location of care and access to psychosocial support, 24h specialist support, respite care and sibling support. Paediatric palliative care should be flexible, responsive and tailored to the needs of children and their families. Robust evaluation of models of care that incorporate these elements is required to inform optimal care.
Publisher: BMJ
Date: 09-2019
DOI: 10.1136/BMJOPEN-2018-027514
Abstract: To estimate the economic impact of delirium in the Australian population in 2016–2017, including financial costs, and its burden on health. A cost of illness study was conducted for the Australian population in the 2016–2017 financial year. The prevalence of delirium in 2016–2017 was calculated to inform cost estimations. The costs estimated in this study also include dementia attributable to delirium. The total and per capita costs were analysed for three categories: health systems costs, other financial costs including productivity losses and informal care and cost associated with loss of well-being (burden of disease). Costs were expressed in 2016–2017 pound sterling (£) and Australian dollars ($A). There were an estimated 132 595 occurrences of delirium in 2016–2017, and more than 900 deaths were attributed to delirium in 2016–2017. Delirium causes an estimated 10.6% of dementia in Australia. The total costs of delirium in Australia were estimated to be £4.3 billion ($A8.8 billion) in 2016–2017, ranging between £2.6 billion ($A5.3 billion) and £5.9 billion ($A12.1 billion). The total estimated costs comprised financial costs of £1.7 billion and the value of healthy life lost of £2.5 billion. Dementia attributable to delirium accounted for £2.2 billion of the total cost of delirium. These findings highlight the substantial burden that delirium imposes on Australian society—both in terms of financial costs associated with health system expenditure and the increased need for residential aged care due to the functional and cognitive decline associated with delirium and dementia. To reduce the substantial well-being costs of delirium, further research should seek to better understand the potential pathways from an episode of delirium to subsequent mortality and reduced cognitive functioning outcomes.
Publisher: Wiley
Date: 03-11-2019
DOI: 10.1111/AJAG.12739
Abstract: To identify caregiving characteristics that are associated with financial stress in Australian carers of people with a chronic disease. Data were collected via the South Australian Health Omnibus, an annual population-based, cross-sectional survey. In iduals who provided care to someone with prevalent chronic conditions were asked about financial stress and caregiving characteristics. Of 32.4% (988/3047) who were carers, 13.4% (132/988) experienced financial stress. Adjusting for age and household income, providing more than 20 hours of care per week (AOR = 2.39, 95% CI = 1.48-3.86), transport assistance (AOR = 1.89, 95% CI = 1.15-3.09) and assistance with household tasks (AOR = 1.92, 95% CI = 1.14-3.26) and caring for a person with a mental illness (AOR = 2.01, 95% CI = 1.24-3.28) were associated with a significant increase in odds of experiencing financial stress. Caring for a person with cancer (AOR = 0.49, 95% CI = 0.30-0.81) or dementia (AOR = 0.40, 95% CI = 0.21-0.76) was associated with decrease in odds. Financial stress was reported by more than 13% of carers, and factors other than household income were implicated.
Publisher: Wiley
Date: 14-04-2015
DOI: 10.1111/AJCO.12352
Abstract: To develop clinical practice guidelines for screening, assessing and managing cancer pain in Australian adults. This three-phase project utilized the ADAPTE approach to adapt international cancer pain guidelines for the Australian setting. A Working Party was established to define scope, screen guidelines for adaptation and develop recommendations to support better cancer pain control through screening, assessment, pharmacological and non-pharmacological management, and patient education. Recommendations with limited evidence were referred to Expert Panels for advice before the draft guidelines were opened for public consultation via the Cancer Council Australia Cancer Guidelines Wiki platform in late 2012. All comments were reviewed by the Working Party and the guidelines were revised accordingly. Screening resulted in six international guidelines being included for adaptation - those developed by the Scottish Intercollegiate Guidelines Network (2008), National Health Service Quality Improvement Scotland (2009), National Comprehensive Cancer Network (2012), European Society of Medical Oncology (2011), European Association for Palliative Care (2011, 2012) and National Institute of Clinical Excellence (2012). Guideline adaptation resulted in 55 final recommendations. The guidelines were officially launched in November 2013. International guidelines can be efficiently reconfigured for local contexts using the ADAPTE approach. Availability of the guidelines via the Cancer Council Australia Wiki is intended to promote uptake and enable recommendations to be kept up to date. Resources to support implementation will also be made available via the Wiki if found to be effective by a randomized controlled trial commencing in 2015.
Publisher: MDPI AG
Date: 13-02-2023
DOI: 10.3390/JCM12041483
Abstract: Research describing patients using medicinal cannabis and its effectiveness is lacking. We aimed to describe adults with non-cancer diagnoses who are prescribed medicinal cannabis via a retrospective medical record review and assess its effectiveness and safety. From 157 Australian records, most were female (63.7% mean age 63.0 years). Most patients had neurological (58.0%) or musculoskeletal (24.8%) conditions. Medicinal cannabis was perceived beneficial by 53.5% of patients. Mixed-effects modelling and post hoc multiple comparisons analysis showed significant changes overtime for pain, bowel problems, fatigue, difficulty sleeping, mood, quality of life (all p 0.0001), breathing problems (p = 0.0035), and appetite (p = 0.0465) Symptom Assessment Scale scores. For the conditions, neuropathic pain eripheral neuropathy had the highest rate of perceived benefit (66.6%), followed by Parkinson’s disease (60.9%), multiple sclerosis (60.0%), migraine (43.8%), chronic pain syndrome (42.1%), and spondylosis (40.0%). For the indications, medicinal cannabis had the greatest perceived effect on sleep (80.0%), followed by pain (51.5%), and muscle spasm (50%). Oral oil preparations of balanced delta-9-tetrahydrocannabinol/cannabidiol (average post-titration dose of 16.9 mg and 34.8 mg per day, respectively) were mainly prescribed. Somnolence was the most frequently reported side effect (21%). This study supports medicinal cannabis’ potential to safely treat non-cancer chronic conditions and indications.
Publisher: Springer Science and Business Media LLC
Date: 29-11-2010
DOI: 10.1007/S00520-009-0780-6
Abstract: Multiple sites enable more successful completion of adequately powered phase III studies in palliative care. Audits of the frequency and distribution of the symptoms of interest can better inform research planning by determining realistic recruitment goals for each site. The proposed studies are to improve the evidence-base for registration and subsidy applications for frequently encountered symptoms where current pharmacological interventions are being used 'off-licence'. Six services participated in a standardised, retrospective, consecutive cohort audit of five symptoms of their inpatient populations to inform the design of double blind randomised controlled phase III studies to which each site would recruit simultaneously. The audit covered all deaths in a 3-month period for people who were referred to a specialist palliative care service who had at least one inpatient admission between referral and death, regardless of when the person was referred to the service. The audits were based around inclusion and exclusion criteria for the proposed studies. Of the 468 people whose medical records were reviewed, potential study participant rates varied by symptom having accounted for general and specific inclusion and exclusion criteria: pain 17.7% delirium 5.8% anorexia 5.1% bowel obstruction 2.8% and cholestatic itch 0%. For those people with a symptom of interest, it was noted at the beginning of the inpatient admission more than half the time. Of all inpatients, fewer than one third would be eligible to participate in at least one study. These data provide a baseline estimate of potential people to approach about clinical trials in supportive care but do not account for clinician 'gate-keeping', lack of interest in participating nor withdrawal from the study once initiated. The data are retrospective and therefore, limited by clinical documentation. The audit directly informed an increase in the number of participating sites.
Publisher: CSIRO Publishing
Date: 2015
DOI: 10.1071/AH14187
Abstract: Objectives A drive to promote advance care planning at a population level has led to a proliferation of online advance care directive (ACD) templates but little information to guide consumer choice. The current study aimed to appraise the quality of online ACD templates promoted for use in Australia. Methods A systematic review of online Australian ACD templates was conducted in February 2014. ACD templates were identified via Google searches, and quality was independently appraised by two reviewers against criteria from the 2011 report A National Framework for Advance Care Directives. Bias either towards or against future medical treatment was assessed using criteria designed to limit subjectivity. Results Fourteen online ACD templates were included, all of which were available only in English. Templates developed by Southern Cross University best met the framework criteria. One ACD template was found to be biased against medical treatment – the Dying with Dignity Victoria Advance Healthcare Directive. Conclusions More research is needed to understand how online resources can optimally elicit and record consumers’ in idual preferences for future care. Future iterations of the framework should address online availability and provide a simple rating system to inform choice and drive quality improvement. What is known about the topic? Online availability of ACD templates provides consumers with an opportunity for advance care planning outside of formal healthcare settings. While online availability has advantages, there is a risk that templates may be biased either for or against medical treatment and may not elicit directives that are appropriately informed by reflection on personal values and discussion with family and health professionals. What does this paper add? This is the first attempt at monitoring the quality and bias of online ACD templates designed for use in Australia. What are the implications for practitioners? The results of this review provide a description and quality index to assist consumers and clinicians in deciding which online ACD template to use or recommend.
Publisher: Springer International Publishing
Date: 30-10-2021
Publisher: JMIR Publications Inc.
Date: 25-04-2023
DOI: 10.2196/48483
Publisher: Wiley
Date: 05-12-2021
DOI: 10.5694/MJA2.51353
Publisher: American Society of Clinical Oncology (ASCO)
Date: 10-10-2012
Abstract: The anesthetic ketamine is widely used for pain related to cancer, but the evidence to support its use in this setting is weak. This study aimed to determine whether ketamine is more effective than placebo when used in conjunction with opioids and standard adjuvant therapy in the management of chronic uncontrolled cancer pain. Ketamine would be considered of net benefit if it provided clinically relevant improvement in pain with limited breakthrough analgesia and acceptable toxicity. In this multisite, dose-escalation, double-blind, randomized, placebo-controlled phase III trial, ketamine or placebo was delivered subcutaneously over 3 to 5 days. In all, 185 participants were included in the primary analysis. There was no significant difference between the proportion of positive outcomes (0.04 95% CI, −0.10 to 0.18 P = .55) in the placebo and intervention arms (response rates, 27% [25 of 92] and 31% [29 of 93]). Pain type (nociceptive v neuropathic) was not a predictor of response. There was almost twice the incidence of adverse events worse than baseline in the ketamine group after day 1 (incidence rate ratio, 1.95 95% CI, 1.46 to 2.61 P .001) and throughout the study. Those receiving ketamine were more likely to experience a more severe grade of adverse event per day (odds ratio, 1.09 95% CI, 1.00 to 1.18 P = .039). The number of patients needed to treat for one additional patient to have a positive outcome from ketamine was 25 (95% CI, six to ∞). The number needed to harm, because of toxicity-related withdrawal, was six (95% CI, four to 13). Ketamine does not have net clinical benefit when used as an adjunct to opioids and standard coanalgesics in cancer pain.
Publisher: European Respiratory Society
Date: 09-2016
Publisher: Elsevier BV
Date: 08-2014
DOI: 10.1016/J.JPAINSYMMAN.2014.03.012
Abstract: Delirium often presents difficult diagnostic and classification challenges in palliative care settings. To review three major areas that create diagnostic and classification challenges in relation to delirium in palliative care: subsyndromal delirium (SSD), delirium in the context of comorbid dementia, and classification of psychomotor subtypes, and to identify knowledge gaps and research priorities in relation to these three areas of focus. We combined multidisciplinary input from delirium researchers and knowledge users at an international delirium study planning meeting and relevant PubMed literature searches as the knowledge synthesis strategy in this review. We identified six (SSD), 33 (dementia), and 44 (psychomotor subtypes) articles of relevance in relation to the focus of our review. Recent literature data highlight the frequency and impact of SSD, the relevance of comorbid dementia, and the propensity for a hypoactive presentation of delirium in the palliative population. The differential diagnoses to consider are wide and include pain, fatigue, mood disturbance, psychoactive medication effects, and other causes for altered consciousness. Challenges in the diagnosis and classification of delirium in people with advanced disease are compounded by the generalized disturbance of central nervous system function that occurs in the seriously ill, often with comorbid illness, including dementia. Further research is needed to delineate the pathophysiological and clinical associations of these presentations and thus inform therapeutic strategies. The expanding aged population and growing focus on dementia care in palliative care highlight the need to conduct this research.
Publisher: Elsevier BV
Date: 06-2014
DOI: 10.1016/J.JPAINSYMMAN.2013.06.017
Abstract: The spatial environments that palliative care patients frequent for business and leisure constrict as their disease progresses and their physical functioning deteriorates. Measuring a person's movement within his or her own environment is a clinically relevant and patient-centered outcome because it measures function in a way that reflects actual and not theoretical participation. This exploratory study set out to test whether the Life-Space Assessment (LSA) would correlate with other commonly used palliative care outcome measures of function and quality of life. The baseline LSA, Australia-modified Karnofsky Performance Status Scale (AKPS), and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative (EORTC QLQ-C15-PAL) scores from two large clinical trials were used to calculate correlation coefficients between the measures. Convergent validity analysis was undertaken by comparing LSA scores between participants with higher (≥70) and lower (≤60) AKPS scores. The LSA was correlated significantly and positively with the AKPS, with a moderate correlation coefficient of 0.54 (P<0.001). There was a significant weak negative correlation between the LSA and the EORTC QLQ-C15-PAL, with a small coefficient of -0.22 (P=0.027), but a strong correlation between the LSA and the EORTC QLQ-C15-PAL item related to independent activities of daily living (r=-0.654, P<0.01). A significant difference in the LSA score between participants with higher (≥70) and lower (≤60) AKPS scores t(97)=-4.35, P<0.001) was found. The LSA appears applicable to palliative care populations given the convergent validity and capacity of this instrument to differentiate a person's ability to move through life-space zones by performance status. Further research is required to validate and apply the LSA within community palliative care populations.
Publisher: Oxford University Press (OUP)
Date: 30-06-2017
Publisher: AMPCo
Date: 03-2016
DOI: 10.5694/MJA15.01339
Abstract: About 9% of Australians aged 65 years and over have a diagnosis of dementia. Clinical practice guidelines aim to enhance research translation by synthesising recent evidence for health and aged care professionals. New clinical practice guidelines and principles of care for people with dementia detail the optimal diagnosis and management in community, residential and hospital settings. The guidelines have been approved by the National Health and Medical Research Council. The guidelines emphasise timely diagnosis living well with dementia and delaying functional decline managing symptoms through training staff in how to provide person-centred care and using non-pharmacological approaches in the first instance and training and supporting families and carers to provide care.
Publisher: American Medical Association (AMA)
Date: 21-02-2022
Publisher: Elsevier BV
Date: 08-2023
Publisher: Elsevier BV
Date: 02-2012
DOI: 10.1016/J.PEC.2011.04.020
Abstract: To examine the feasibility and acceptability of routine provision of patient question prompt lists (QPLs) to promote patient participation and patient-clinician communication in medical consultations. Four cancer centres across NSW, Australia (two rural, two urban) were invited to participate, involving distribution of QPLs to patients seeing a medical or radiation oncologist, or palliative care clinician. Patients rated their satisfaction after their next consultation. Cancer specialists provided their views at the end of the study. Sixty-four percent (389/606) of patients attending consultations received a QPL. Of patients offered a QPL (426), 91% accepted. Of 139 patients surveyed post-consultation, 89% reported reading the QPL and, of these, 44% referred to the QPL during the consultation at least once. All of 10 cancer specialists providing their views post-implementation reported that QPL implementation in routine practice was feasible and did not strain resources. Cancer patients and cancer specialists showed support for routine dissemination of the QPL. For successful implementation of evidence-based tools we recommend promotion by local clinical ch ions, negotiation with clinic staff about dissemination methods, raised patient awareness through on-site project facilitators, media, consumer and support groups, and availability of resources in hard copy and via online sources.
Publisher: Wiley
Date: 20-11-2008
DOI: 10.1111/J.1440-1630.2007.00705.X
Abstract: To define the unmet needs of activities of daily living as defined by patients and caregivers in a palliative care inpatient unit. A cross-sectional prevalence study of a convenience cohort of a dyad of patient/caregiver. Functional status and unment needs were assessed. Agreement between respondents was analysed. Caregivers identified significantly more unmet needs than patients (2.5 vs 2.5 p = 0.03). Areas of unmet need included mobility, leisure and bathing. Routine screening for unmet needs in function should be part of all inpatient palliative care assessments.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 04-2020
DOI: 10.1097/CCM.0000000000004238
Abstract: To inform development of a core outcome set, we evaluated the scope and variability of outcomes, definitions, measures, and measurement time-points in published clinical trials of pharmacologic or nonpharmacologic interventions, including quality improvement projects, to prevent and/or treat delirium in the critically ill. We searched electronic databases, systematic review repositories, and trial registries (1980 to March 2019). We included randomized, quasi-randomized, and nonrandomized intervention studies of pharmacologic and nonpharmacologic interventions. We extracted data on study characteristics, verbatim descriptions of study outcomes, and measurement characteristics. We assessed quality of outcome reporting using the Management of Otitis Media with Effusion in Children with Cleft Palate study scoring system risk of bias and study quality using the Cochrane tool and Scottish Intercollegiate Guidelines Network checklists. We categorized reported outcomes using Core Outcome Measures in Effectiveness Trials taxonomy. From 195 studies (1/195 pediatric) recruiting 74,632 participants and reporting a mean ( sd ) of 10 (6.2) outcome domains, we identified 12 delirium-specific outcome domains. Delirium incidence (147, 75% of studies), duration (67, 34%), and antipsychotic use (42, 22%) were most commonly reported. We identified a further 94 non–delirium-specific outcome domains within 19 Core Outcome Measures in Effectiveness Trials taxonomy categories. For both delirium-specific and nonspecific outcome domains, we found multiple outcomes in domains due to differing descriptions and time-points. The Confusion Assessment Method-ICU with Richmond Agitation-Sedation Scale to assess sedation was the most common measure used to ascertain delirium (51, 35%). Measurement generally began at randomization or ICU admission, and lasted from 1 to 30 days, ICU/hospital discharge. Frequency of measurement was highly variable with daily measurement and greater than daily measurement reported for 36% and 37% of studies, respectively. We identified substantial heterogeneity and multiplicity of outcome selection and measurement in published studies. These data will inform the consensus building stage of a core outcome set to inform delirium research in the critically ill.
Location: Australia
Start Date: 2017
End Date: 2019
Funder: ACT Health
View Funded ActivityStart Date: 2017
End Date: 2019
Funder: Canadian Institutes of Health Research
View Funded ActivityStart Date: 2017
End Date: 2020
Funder: Australian Cancer Research Foundation
View Funded ActivityStart Date: 2018
End Date: 2019
Funder: Cancer Australia
View Funded ActivityStart Date: 2020
End Date: 2023
Funder: Department of Health, Australian Government
View Funded ActivityStart Date: 2020
End Date: 2023
Funder: Department of Health, Australian Government
View Funded ActivityStart Date: 2020
End Date: 2020
Funder: Cancer Australia
View Funded ActivityStart Date: 2020
End Date: 2024
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2020
End Date: 2020
Funder: Cancer Australia
View Funded ActivityStart Date: 2008
End Date: 2011
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2009
End Date: 2009
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2017
End Date: 2018
Funder: National Breast Cancer Foundation
View Funded ActivityStart Date: 2013
End Date: 2019
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2008
End Date: 2010
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2008
End Date: 2009
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2008
End Date: 2014
Funder: Department of Health and Ageing, Australian Government
View Funded ActivityStart Date: 2007
End Date: 2010
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2008
End Date: 2010
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2009
End Date: 2010
Funder: Cancer Institute NSW
View Funded ActivityStart Date: 2012
End Date: 2014
Funder: Cancer Institute NSW
View Funded ActivityStart Date: 2011
End Date: 2013
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2011
End Date: 2013
Funder: Cancer Council Queensland
View Funded ActivityStart Date: 2009
End Date: 2013
Funder: Cancer Institute NSW
View Funded ActivityStart Date: 2010
End Date: 2011
Funder: Department of Health and Ageing, Australian Government
View Funded ActivityStart Date: 2010
End Date: 2012
Funder: Dust Disease Board
View Funded ActivityStart Date: 2011
End Date: 2013
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2012
End Date: 2014
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2012
End Date: 2014
Funder: Sydney West Translational Cancer Research Centre
View Funded ActivityStart Date: 2012
End Date: 2012
Funder: University of Technology Sydney
View Funded ActivityStart Date: 2012
End Date: 2015
Funder: Department of Health and Ageing, Australian Government
View Funded ActivityStart Date: 2012
End Date: 2012
Funder: Flinders University
View Funded ActivityStart Date: 2012
End Date: 2012
Funder: University of New South Wales Canberra
View Funded ActivityStart Date: 2013
End Date: 2018
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2013
End Date: 2018
Funder: Commonwealth Scientific and Industrial Research Organisation
View Funded ActivityStart Date: 2013
End Date: 2015
Funder: Cancer Institute NSW
View Funded ActivityStart Date: 2013
End Date: 2015
Funder: Cancer Council Western Australia
View Funded ActivityStart Date: 2014
End Date: 2016
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2014
End Date: 2016
Funder: University of New South Wales Sydney
View Funded ActivityStart Date: 2014
End Date: 2019
Funder: Cancer Institute NSW
View Funded ActivityStart Date: 2014
End Date: 2017
Funder: National Breast Cancer Foundation
View Funded ActivityStart Date: 2015
End Date: 2016
Funder: Flinders Medical Centre Foundation
View Funded ActivityStart Date: 2015
End Date: 2015
Funder: University of Technology Sydney
View Funded ActivityStart Date: 2016
End Date: 2018
Funder: Cancer Australia
View Funded ActivityStart Date: 2016
End Date: 2018
Funder: Australian Cancer Research Foundation
View Funded ActivityStart Date: 2016
End Date: 2019
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2016
End Date: 2019
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2016
End Date: 2018
Funder: Cancer Australia
View Funded ActivityStart Date: 2016
End Date: 2018
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2016
End Date: 2018
Funder: Cancer Australia
View Funded ActivityStart Date: 2017
End Date: 2020
Funder: Cancer Australia
View Funded ActivityStart Date: 2016
End Date: 2017
Funder: Dementia Collaborative Research Centres, Australia
View Funded ActivityStart Date: 2016
End Date: 2018
Funder: NSW Ministry of Health
View Funded ActivityStart Date: 2017
End Date: 2020
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2017
End Date: 2020
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2017
End Date: 2020
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2019
End Date: 2022
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2011
End Date: 2015
Funder: National Health and Medical Research Council
View Funded ActivityStart Date: 2016
End Date: 2016
Funder: Cancer Council NSW
View Funded Activity