Search

Background: Hospital-to-home transitions become more frequent and complex as people approach end of life. Although carers are critical to enabling these transitions, they report high levels of unmet need. A review of the interventions to assist these care transitions, along with understanding those intervention components and mechanisms that support carers of people with advanced illness, is required to inform an optimal care model for palliative care practice. Aim: To describe the characteristics and reporting quality of intervention studies aimed at improving hospital-to-home transitions for carers of people with advanced illness. Design: This is a systematic review with a narrative synthesis. (international prospective register of systematic reviews [PROSPERO] ID: CRD42020192088). Data Sources: MEDLINE, EMCare, and PsychINFO databases were searched (2000-2021) for prospective studies reporting on interventions that (1) aimed to improve hospital-to-home transitions and (2) targeted carers of people with advanced illness. The Template for Intervention Description and Replication (TIDieR) checklist and constructs of the Care Transition Framework were used to assess the reporting quality of intervention design, delivery, and outcomes. Results: In total, 37 articles were analyzed that included a range of study designs, interventions, and outcomes. Health care utilization (n = 29) and clinical patient-related (n = 21) measures were the most reported outcome. Theoretical discussion was minimal (n = 5) with most studies using efficacy data from past research to justify intervention choice. Conclusion: Carers are critical partners in hospital-to-home transitions at end of life; yet they are largely under-represented in intervention design, delivery, and outcomes. Improving the reporting quality of carer-focused care transition interventions will inform future study design and support translation into practice and policy.

There is widespread recognition that the provision of high quality, appropriate and equitable care to older adults with cancer is a growing challenge in oncology practice. Radiation therapy (RT) is an effective and localised treatment that represents an attractive curative or palliative option for many older adults, and radiation therapists (RTT) play an important role in the delivery, support and quality of care for people during RT. The need to develop an evidence-based, global approach to improving all radiation oncology (RO) professionals' knowledge and clinical practice in geriatric oncology (GO) has been previously identified. This article specifically focusses on the status quo of GO clinical practice and education for RTT worldwide. We explore the unique clinical role that RTT play in the management of older adults with cancer and define multiple clinical care points in which RTT could potentially participate in geriatric screening, geriatric assessment and intervention to optimise the care of older adults, with a focus on dementia. Directions for future efforts to improve the knowledge and clinical skills of RTT in caring for older adults are discussed.

PURPOSE: 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. METHODS AND MATERIALS: 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. RESULTS: 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. CONCLUSIONS: 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.

Background With increasing use of medicinal cannabis for symptom management, clinical trials nurses need to consider the various legal, social, ethical, and interdisciplinary care issues of implementing these clinical trials, especially in a palliative care population. Aim To define the trials nurses’ role in operationalising a medicinal cannabis pharmacokinetic inpatient trial in an advanced cancer population. Methods A qualitative, descriptive design incorporating case study methodology was used. Data were collected from minuted meetings, field notes, telephone, and email discussions involving trials nurses at two palliative care sites. Data were integrated and synthesised to identify the key considerations required to operationalise the trial and define the trials nurses’ role. Findings Three key considerations were identified: (i) Normalising the trial, (ii) Creating the environment to undertake the trial, and (iii) Managing the complexity. The trials nurses’ role was explored through subthemes of these considerations including: their understanding of the purpose of the research and training in the protocol; organising inpatient resources, pharmacy requirements and managing the external scrutiny; participant recruitment, staffing requirements, safety, and supporting caregivers. Discussion This study emphasises the multifactorial role of the trials nurses in managing a complex palliative care trial, and the importance of their early involvement and recognition as the vital link between all parties. Conclusion Defining the trials nurses’ role, within the confines of the protocol, the context of efficient nursing processes and ensuring a patient-centred approach enabled the operationalisation of a Phase I/II medicinal cannabis trial which will have global impact.

BACKGROUND The 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. OBJECTIVE This 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. METHODS A 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). RESULTS Sixty-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. CONCLUSIONS The 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. CLINICALTRIAL PROSPERO CRD42020221238

OBJECTIVE: 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. METHODS: 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). RESULTS: 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%). CONCLUSION: 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.

The research literature on the growing field of consumer financial capability displays a wide diversity of understanding about the meaning and measurement of the concept. While sufficient research literature has been produced for a review of measurement domains and indicators, this work remains undone. The aim of the study is to assess the quantitative peer-reviewed research literature to advance the field toward building an evidence base for financial capability interventions and policies to improve family financial well-being and reduce economic inequality. This scoping review study analyzed the financial capability scholarly literature between 2015 and 2018. Overall, 34 studies used quantitative data and met all inclusion criteria for this study. Findings suggest that financial capability measurement constructs were operationalized in 12 different ways (

Purpose 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. Methods 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. Results 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. Conclusion 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.

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.

Objective To examine sociodemographic characteristics and caring experiences associated with being an older rather than younger carer of an adult with a chronic health condition. Methods 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 (Results 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. Discussion 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 diverse.

Background Cancer cachexia negatively affects quality of life (QoL) and increases symptom burden. A multimodal treatment approach may optimize cachexia outcomes, including QoL. We evaluated QoL and symptoms over time among patients attending a multidisciplinary clinical service for cancer cachexia. Methods Adults with cancer who attended the clinical service three times between 2017 and 2020 were included. Quality of life and symptoms were assessed using the European Organization for Research and Treatment of Cancer Quality of life Questionnaire Core 15 Palliative Care (EORTC QLQ-C15-PAL) and the Functional Assessment Anorexia/Cachexia Therapy (FAACT) questionnaires. Physical function was assessed using the 30s sit-to-stand test and handgrip strength. Results Overall, 162 patients (age = 67.2 ± 12.0 years) were included. Mean six-month weight loss at baseline was 10.4% ± 9.4%. Mean body weight was stable between clinic visits (P = 0.904) and no change in sit-to-stand repetitions (P = 0.133) or handgrip strength (P = 0.734) occurred over time. Improvements in EORTC QLQ-C15-PAL overall QoL (Δ10.7 ± 2.5, P < 0.001), physical function (Δ8.0 ± 2.4, P = 0.003) and emotional function (Δ11.4 ± 2.9, P < 0.001) occurred by the second visit. EORTC QLQ-C15-PAL fatigue (Δ13.8 ± 2.9, P < 0.001), pain (Δ10.3 ± 3.3, P = 0.007), nausea/vomiting (Δ16.1 ± 3.0, P < 0.001) and appetite symptoms (Δ25.9 ± 3.8, P < 0.001) also improved by the second visit. FAACT total score (Δ14.6 ± 2.7, P < 0.001), anorexia-cachexia symptoms (Δ6.6 ± 1.1, P< 0.001), and physical (Δ3.7 ± 0.70, P < 0.001), emotional (Δ1.9 ± 0.60, P = 0.005) and functional wellbeing (Δ2.7 ± 0.71, P = 0.001) improved by the second visit. All improvements in EORTC QLQ-C15-PAL and FAACT outcomes were maintained at the third visit. Conclusion Significant improvements in QoL and symptoms were associated with attending a cancer cachexia clinical service. Our findings support using multidisciplinary, multimodal cancer cachexia treatment approaches to improve patient wellbeing.

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.

Background: 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. Aim: 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’. Design: A trial-embedded qualitative study via semi-structured interviews and directed content analysis using Michie’s Behaviour Change Wheel and the Theoretical Domains Framework. Setting/participants: Thirty-nine people involved in the trial: nurses ( n = 17), physicians ( n = 6), patients ( n = 6), family caregivers ( n = 4), physiotherapists ( n = 3), a social worker, a pastoral care worker and a volunteer. Results: 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). Conclusion: 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. Australian New Zealand Clinical Trials Registry, ACTRN12617001070325; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373168

The article collates the narratives of experiences of the international faculty who mentored the quality improvement teams from India since 2017.

BackgroundOlder adults living with dementia frequently transition between healthcare settings. Care transitions increase vulnerability and risk of iatrogenic harm.Aim and objectiveTo examine the quality of transitional care arrangements within discharge documentation for older people living with dementia.DesignSecondary analysis of cohort study data.MethodA 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.ResultsSixty 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%).ConclusionDischarge 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.Relevance to clinical practiceThere is a need for safe, timely, accurate and comprehensive discharge information to ensure the safety of people living with dementia and prevent adverse harm.

Background Delirium is a serious and distressing neurocognitive condition manifesting as an acute change in mental status due to medical illness, injury and/or treatment. The understanding of delirium pathophysiology is limited and largely hypothetical and this evidence gap impedes the development of effective therapies. Delirium biomarker studies have a key role in building knowledge of the pathophysiology of delirium, subject to the robustness of their methods and reporting. Our objective was to describe the multi-method development and finalisation of a new reporting guideline for delirium fluid biomarker studies: REDEEMS. Methods A previously published systematic review on delirium and advanced cancer biomarkers informed a three-round modified Delphi study with international experts in delirium research in 2019. We held a follow-up consensus meeting with a newly configured expert panel of 12 delirium researchers in June, 2020 to determine the inclusion or exclusion of 16 items that achieved 70-80% (i.e., borderline) consensus in the Delphi study. Results Of the 16 items presented at the consensus meeting, seven were excluded, six remained as discrete items, and three were merged with another item. The final REDEEMS guideline contained nine items specific to reporting delirium biomarker studies. Conclusion The REDEEMS guideline was developed through a rigorously conducted Delphi and follow-up consensus meeting with international experts in delirium research. The REDEEMS will support the improved reporting rigour and synthesis of future delirium biomarker research. The next step is dissemination to promote uptake of the guideline and evaluate the influence on improved study methods and capacity to address research hypotheses.

BackgroundMost 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.ObjectivesThis 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.MethodsA survey using discrete choice experiment (DCE) methods was completed online by a general population sample 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).ResultsThe 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.ConclusionsThis 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.

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]. https://clin.larvol.com/trial-detail/ACTRN12622000129785.

BackgroundIn 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.MethodsA 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.ResultsOut 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.ConclusionThe 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.

Introduction 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. Methods 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. Results 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 $24,509 (in 2019 US$). Discussion 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.

This study explores healthcare professionals (HCPs)’ perception and current management of sleep disturbance (SD) in people with malignant brain tumours and their caregivers. We aimed to identify barriers to effective management of SD in neuro-oncology care. We conducted semi-structured interviews with 11 HCPs involved in neuro-oncology care. The study was underpinned by the Capability Opportunity Motivation-Behaviour (COM-B) model within the Behavioural Change Wheel (BCW) guiding topic selection for the exploration of underlying processes of HCPs’ behaviours and care decisions for SD management. Data were analysed thematically using a framework synthesis, and subsequently mapped onto the BCW to identify barriers for effective management and recommend potential interventions. We identified four themes: HCPs’ clinical opinions about SD, the current practice of SD management in neuro-oncology clinics, gaps in the current practice, and suggested areas for improvements. HCPs perceived SD as a prevalent yet secondary issue of low priority in neuro-oncology care. SD was unrecognised, and inadequately managed in usual clinical settings. Interventional options included modifying the use of corticosteroids or prescribing sedatives. When mapped onto the BCW, themes identified main barriers as a lack of awareness among HCPs about SD warranting care, due to the absence of screening tools and limited knowledge and resources for therapeutic interventions. Multidisciplinary HCPs need training in the routine use of appropriate sleep assessment tools, and access to clear management pathways. More professional resources are needed to educate staff in implementing appropriate interventions for people with malignant brain tumours who are experiencing SD.

Mentors at seven United States and Australian academic institutions partnered with seven leading Indian academic palliative care and cancer centers to undertake a program combining remote and in-person mentorship, didactic instruction, and project-based learning in quality improvement. From its inception in 2017 to 2020, the Promoting Assessment and Improvement of the Cancer Experience (PC-PAICE) Program conducted three cohorts for capacity building of 22 Indian palliative care and cancer programs. Indian leadership established a Mumbai training hub in 2019 with philanthropic support, Quality Improvement Hub (e.g., QI-Hub) India. In 2020 the project which now focuses on both palliative care and cancer teams as EQuIP-India. EQuIP now leads ongoing Indian national collaboratives and training in quality improvement and is integrated into India's National Cancer Grid. PC-PAICE demonstrates a feasible model of international collaboration and capacity building in palliative care and cancer quality improvement. It is one of several networked, blended learning approaches with potential for rapid scaling of evidence-based practices.

Opinion statementDelirium 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.

As the global population ages, the care of older adults with cancer is increasingly recognised as a growing challenge in oncology practice worldwide. At present, outcomes for older adults with cancer are worse than younger counterparts. The need for improved clinician education around geriatric oncology is internationally recognised as being fundamental to addressing this problem. Radiation therapy represents an excellent localised treatment modality for older adults due to its limited systemic toxicity, especially in circumstances in which surgery and chemotherapy are deemed inappropriate. Thus, the education of future radiation oncologists and other radiation oncology professionals (including radiation therapists, nurses, and physicists) in geriatric oncology is crucial to ensuring the complex needs of this patient population are met. However, evidence shows that within the specialty of radiation oncology, knowledge levels around key concepts in geriatric oncology are low and there is limited educational focus on the specific issues important for the care of older adults. An evidence-based, global approach to improving radiation oncology professionals' knowledge and clinical practice in geriatric oncology is needed to provide optimal care for older adults undergoing radiation therapy. This article provides an overview of the current status of geriatric oncology training and education in the specialty of radiation oncology and future directions to improve the knowledge and skills of radiation oncology professionals in caring for older adults.

Background 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. Methods 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. Results 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 individual 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. Conclusions 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.

Background 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. Methods 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. Results 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 individual’s SD did not affect the chance of the other member of the patient-caregiver dyad experiencing SD. Conclusions More than half the sample 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.

Sleep disturbance is easily overlooked in subspecialty consultations and may remain untreated during and after initial treatment of malignant brain tumours (BT). This study aimed to explore perceptions of healthcare professionals (HCPs) actively engaged in neuro-oncology care towards sleep disturbance in adults with primary or secondary BT and to identify facilitators and barriers to assessment and management of sleep disturbance. A survey was conducted to explore HCPs’ perceptions about their knowledge, skills, and confidence in managing sleep disturbance in people with BT. The survey also explored their beliefs, motivation, and perceived role in managing sleep disturbance, and views on contributing external factors that impacted management. Seventy-three interdisciplinary HCPs with average of 9.3 years of clinical experience in neuro-oncology participated. Fifty-five percent of participants were medical or radiation oncologists. Participants reported a high observed prevalence of sleep disturbance, especially in inpatient settings, during initial treatment, and after tumour progression or recurrence. Only 20% of participants reported routinely reviewing sleep-related symptoms during consultations. General symptom screening questions were perceived as helpful to identify sleep disturbance. Almost all respondents (92%) viewed corticosteroids as the most relevant risk factor, followed by psychological distress. The most frequent clinical responses were offering verbal advice and prescribing medication. The lack of time, resources, and training for managing sleep issues were commonly reported barriers. Overall, participants perceived sleep disturbance as highly prevalent in neuro-oncology and positively viewed the importance of managing this symptom. Practical barriers to management were reported that future interventions can target.

INTRODUCTION: A pandemic coronavirus, SARS-CoV-2, causes COVID-19, a potentially life-threatening respiratory disease. Patients with cancer may have compromised immunity due to their malignancy and/or treatment, and may be at elevated risk of severe COVID-19. Community transmission of COVID-19 could overwhelm health care services, compromising delivery of cancer care. This interim consensus guidance provides advice for clinicians managing patients with cancer during the pandemic. MAIN RECOMMENDATIONS: During the COVID-19 pandemic: In patients with cancer with fever and/or respiratory symptoms, consider causes in addition to COVID-19, including other infections and therapy-related pneumonitis. For suspected or confirmed COVID-19, discuss temporary cessation of cancer therapy with a relevant specialist. Provide information on COVID-19 for patients and carers. Adopt measures within cancer centres to reduce risk of nosocomial SARS-CoV-2 acquisition; support population-wide social distancing; reduce demand on acute services; ensure adequate staffing; and provide culturally safe care. Measures should be equitable, transparent and proportionate to the COVID-19 threat. Consider the risks and benefits of modifying cancer therapies due to COVID-19. Communicate treatment modifications, and review once health service capacity allows. Consider potential impacts of COVID-19 on the blood supply and availability of stem cell donors. Discuss and document goals of care, and involve palliative care services in contingency planning. CHANGES IN MANAGEMENT AS A RESULT OF THIS STATEMENT: This interim consensus guidance provides a framework for clinicians managing patients with cancer during the COVID-19 pandemic. In view of the rapidly changing situation, clinicians must also monitor national, state, local and institutional policies, which will take precedence. ENDORSED BY: Australasian Leukaemia and Lymphoma Group; Australasian Lung Cancer Trials Group; Australian and New Zealand Children's Haematology/Oncology Group; Australia and New Zealand Society of Palliative Medicine; Australasian Society for Infectious Diseases; Bone Marrow Transplantation Society of Australia and New Zealand; Cancer Council Australia; Cancer Nurses Society of Australia; Cancer Society of New Zealand; Clinical Oncology Society of Australia; Haematology Society of Australia and New Zealand; National Centre for Infections in Cancer; New Zealand Cancer Control Agency; New Zealand Society for Oncology; and Palliative Care Australia.

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.

Background Delirium is a serious and distressing neurocognitive condition common in people with advanced illness. The understanding of delirium pathophysiology is limited and largely hypothetical. To accelerate empirical understanding of delirium pathophysiology, robust scientific methods for conducting and reporting delirium biomarker studies are urgently needed. The aim of this study was to develop international consensus on the core elements of high-quality delirium biomarker studies. Methods A three-round modified Delphi survey was conducted from February to August 2019. Participants were international researchers experienced in conducting delirium studies from a range of settings (hospital, university, research centres). Round one commenced with open-ended questions developed from results from a prior systematic review and the REMARK (REporting recommendations for tumour MARKer prognostic studies) checklist. Responses were qualitatively analysed, and closed statements were developed. Participants then ranked the importance of these statements using a 5-point Likert scale in rounds 2 and 3. A priori consensus was defined as ≥70% participant agreement. Descriptive statistics for each item were computed including the mean Likert scores, SD and median participant scores. Results Twenty-eight participants completed survey round one, 16 completed round two and 19 completed the final round. Consensus was achieved for a total of 60 items. Conclusion The Delphi survey identified items that expert researchers agreed were important in the conduct of delirium biomarker studies. These reporting items provide a strong platform for improved methodological quality and opportunities to synthesise future delirium biomarker studies.

Context 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. Objectives Does oxycodone reduce chronic breathlessness compared with placebo? Methods 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. Results 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 Conclusion 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.

BackgroundAbout 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.MethodsAdults with advanced cancer and scored worst pain ≥ 2/10 on a numeric rating scale (NRS) were recruited from 6 Australian oncology/palliative 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.ResultsOverall, 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, pConclusionsIn 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.Trial registrationACTRN12615000064505. World Health Organisation unique trial numberU1111–1164–4649. Registered 23 January 2015.

IntroductionMany 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.Methods and analysisA 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.Ethics and disseminationParticipant 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.Trial registration numberANZCTR ACTRN12617000747325.

To review the published literature on the cost of delirium. Every study has found that delirium increases the cost of care in every setting, in hospital, after discharge at home and in long-term care. Delirium results in increased financial and social costs which, when considered with the impacts on morbidity and mortality, support the call to urgently improve prevention, screening, diagnosis and treatment of delirium. Delirium is common with serious short- and long-term sequelae. However, there are no licensed treatments internationally and relatively little biomedical discovery with the target of finding a cure, with the invisibility or underestimation of the economic implications as a potential driver for this inertia. We conducted a narrative review of published literature in English quantitatively evaluating the financial and social costs of delirium to the health and care systems, patients and their carers. Delirium increases the cost of the index hospitalisation as well as increasing the need for post-acute care and the demands on unpaid, often older, carers. Delirium may cause as much as 10% of all cases of dementia and the ongoing need for care of these people with dementia doubles the cost of delirium. Prevention of delirium not only reduces the cost of delirium but also may decrease subsequent rate of dementia. The high cost of delirium itself as well as the resultant dementia warrants greater efforts to prevent delirium and discover effective treatment.

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.

AIM: Following the establishment of paediatric palliative care services over recent decades, this study sought to identify information to inform future policy and practice. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Background: 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. Aim: 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. Design: Prospectively registered systematic review adhering to Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Data sources: 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. Results: 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 ( n = 7), commonly using the Memorial Delirium Assessment Scale (6/8 studies, 75%). Four studies reported delirium incidence. Non-delirium specific outcomes included mortality, agitation, adverse events, other symptoms and quality of life. Conclusion: 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.

Palliative care in the older person often occurs in the context of both chronic disease and multimorbidity. Coexisting conditions may include musculoskeletal, psychiatric, cognitive, and chronic pain-related problems, each associated with substantial symptomatology and disability. It is important to have an approach to palliative care that avoids management within disease ‘silos’, to ensure all treatments are integrated by considering the combined benefits and risks including impacts of polypharmacy; to respond to preference and choice of the older person; and to consider outcomes from symptom, function, and social domains. The complexity of older people’s care demands the formation of a collaborative partnership between primary care, geriatric, palliative care and social care services, other healthcare providers and the community in which they live on the basis of needs. The caregiver of the older person warrants specific mention, who is 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, more so if cognitive decline is expected. Physiological changes and the frequency of falls, frailty, depression, and delirium are important when planning care and prescribing.

Delirium is the most common and serious neuropsychiatric disorder experienced by people with advanced illness. It leads to significant morbidity, and significant distress for the person themselves, family members and staff. Delirium often bodes of a poor prognosis and can significantly interfere with pain and symptom control. Unfortunately, delirium is often under-recognized or misdiagnosed in the palliative care patient, 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 consider their treatment with due consideration of treatment goals and illness trajectory; and individualize the pharmacological and non-pharmacological interventions to support delirium recovery, maximize patient safety, and reduce distress from symptoms.

This study aimed to (1) explore the perceptions of people living with cancer about exercise in general and exercise as an adjunct form of cancer care, (2) explore their perceptions regarding exercise counselling needs and preferences, and (3) investigate how these perceptions of exercise as an adjunct form of cancer care shape survivors exercise levels postcancer diagnosis.A cross-sectional design and online survey were used to recruit cancer survivors via cancer-related networks throughout Australia. Two factor analyses were conducted to examine the structure and reduce the number of variables pertaining to exercise during and after the cancer treatment. Extracted components were used in one-way analysis of variance to compare differences in physical activity levels postcancer diagnosis.Participants (N = 288) had very positive perceptions of exercise, yet only 50% of participants would prefer to receive exercise counselling. Those who were more active postcancer diagnosis had higher exercise beliefs than those who were similarly active (p = 0.04, r = 0.27) and less active (p = 0.03, r = 0.24) postdiagnosis. Those who were less active also had lower exercise knowledge than those who were similarly active (p = 0.01, r = 0.31) and more active (p = 0.03, r = 0.26). Safety beliefs did not significantly differ between cancer survivors' activity levels (p = 0.16) CONCLUSION: This survey highlights the potential benefits of a concentrated effort in connecting survivors to relevant services and resources, and utilizing cancer clinicians to communicate with survivors about the role of exercise in cancer care.

Background 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. Methods 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 http://www.comet- initiative.org/studies/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. Results 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. Conclusions 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.

ObjectivesWe 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.MethodsSafety 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.Results1449/5624 (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 (χ2=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.ConclusionsSevere morphine-associated toxicity was uncommon and not associated with study arm. Clinical consequences were minor and self-limiting.Trial registration numberACTRN126000806268.

© The Author(s) 2019. 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 individual 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 individual 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.

IntroductionMorphine 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.MethodsMultisite (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.ResultsAnalysed 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.ConclusionNo differences were observed between arms for breathlessness, but the intervention arm used less rescue immediate-release morphine.Trial registration numberACTRN12609000806268.

Background: 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. Methods and results: 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 ( pConclusions: 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.

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 reported their outcomes.