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Background: Delirium is common, distressing, serious and under-researched in specialist palliative care settings. Objectives: 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. Design: Systematic review (PROSPERO 2017 CRD42017062178). Data sources: 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. Results: The 29 included studies were conducted between 1994 and 2015 in diverse 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. Conclusion: Non-pharmacological delirium interventions have frequently excluded and under-characterised people requiring palliative care and infrequently rep

Background: 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. Aim: To test the feasibility of two service-level strategies for supporting guideline implementation: a screening system and medical record audit. Design: Multimethods. Setting: One oncology outpatient service, and one palliative care outpatient and inpatient service. Participants: Patients with advanced cancer. Methods: 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. Results: 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). Conclusions: 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.

ObjectiveThe 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.MethodThe 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.ResultFindings 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.Significance of resultsSelf-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

Introduction 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. Methods and analysis 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. Ethics and dissemination Ethical approval was obtained for all four sites. Trial r

Context: 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. Objectives: 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. Methods: 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. Results: 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. Conclusion: 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.

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 andMCSwere associated with carer status, lower-than-degree-level education, employment status other than employed and annual household income less than A$60 000. 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.

Background: Systematic reviews and guidelines are available to guide management of cough in lung cancer, but evidence for intervention efficacy is limited, and little research has yet described current practice. Aim: To canvass the experiences and perspectives of Australian health professionals with regard to the clinical importance and current management of cough in people with lung cancer. Methods: An open, online, cross-sectional survey was conducted in 2018. Health professionals of all disciplines were eligible, and recruitment was by direct approach to lung cancer multidisciplinary teams, professional listservs and conferences. Findings: Fifty-eight people completed the survey, of whom 26 (45%) were medical practitioners, 21 (36%) registered nurses, and 10 (17%) allied health practitioners. Nearly all (>90%) considered cough to be of clinical concern and welcomed efforts to improve management. In most services, ≤25% of patients with clinically concerning cough receive management. Opiates were perceived to be the most consistently effective pharmacological strategy, with ≥50% participants indicating minimal or variable effectiveness for all others. The few participants who had experience of non-pharmacological strategies perceived these to be only somewhat or variably effective. Discussion: Results from this study identified variability in the management of cough associated with lung cancer, and suggest this problem may be under-treated in most services. Unmet needs identified by this study are likely under-estimated due to the volunteer effect associated with open surveys. Conclusion: Further efforts are needed to raise awareness about the importance of managing cough and provide evidence-based strategies for this population.

Objectives: To compare physical and mental health status between cancer carers versus non-carers in a population-based sample and explore sociodemographic and caring characteristics associated with poor carer health status. Methods: 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. Results: The weighted sample 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. Conclusions: 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 sample 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.

Background: 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. Methods: 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. Results: 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. Conclusion: 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 demen

Background: The literature describing the incidence of sleep difficulty in CNS cancers is very limited, with exploration of a sleep difficulty symptom trajectory particularly sparse in people with advanced disease. We aimed to establish the prevalence and longitudinal trajectory of sleep difficulty in populations with CNS cancers receiving palliative care nationally, and to identify clinically modifiable predictors of sleep difficulty. Methods: A consecutive cohort of 2406 patients with CNS cancers receiving palliative care from sites participating in the Australian national Palliative Care Outcomes Collaboration were evaluated longitudinally on patient-reported sleep difficulty from point-of-care data collection, comorbid symptoms, and clinician-rated problems. Multilevel models were used to analyze patient-reported sleep difficulty. Results: Reporting of mild to severe sleep difficulties ranged from 10% to 43%. Sleep scores fluctuated greatly over the course of palliative care. While improvement in patients' clinical status was associated with less sleep difficulty, the relationship was not clear when patients deteriorated. Worsening of sleep difficulty was associated with higher psychological distress (P < .0001), greater breathing problems (P < .05) and pain (P < .05), and higher functional status (P < .001) at the beginning of care. Conclusions: Sleep difficulty is prevalent but fluctuates widely in patients with CNS cancers receiving palliative care. A better-tailored sleep symptom assessment may be needed for this patient population. Early interventions targeting psychological distress, breathing symptoms, and pain for more functional patients should be explored to see whether it reduces sleep difficulties late in life.

Background: 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. Aim: To evaluate the cost-effectiveness of subcutaneous ketamine versus placebo in this patient population. Design and setting: 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. Results: 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. Conclusion: 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.