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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.

This chapter summarises the current state of palliative care provided to people living in the community in Australia (‘community based palliative care’). We begin with a brief overview of Australia’s changing demography, health system and historical context of palliative care for people living with cancer. We then discuss a selection of ways in which Australia is working to improve access for people living with cancer in the community who have palliative care needs.

BACKGROUND: Non-medical devices such as the handheld fan (fan), mobility aids (wheeled walkers with seats) and inspiratory muscle training (IMT) devices offer benefits for patient management of chronic breathlessness. We examined the published evidence regarding patient, carer and clinician use of the fan, mobility aids and IMT devices for chronic breathlessness management, and the potential barriers and facilitators to day-to-day use in a range of settings. METHODS: MEDLINE, Embase, Scopus, EBSCO and the Cochrane Database of Systematic Reviews were searched. Papers were imported into EndNote and Rayyan for review against a priori eligibility criteria. Outcome data relevant to use were extracted and categorised as potential barriers and facilitators, and a narrative synthesis exploring reasons for similarities and differences conducted. RESULTS: Seven studies met the inclusion criteria (n=5 fan, n=2 mobility aids and n=0 IMT devices). All of the studies presented patient use of non-medical devices only. Patients found the fan easy to use at home. Mobility aids were used mainly for outdoor activities. Outdoor use for both devices were associated with embarrassment. Key barriers included: appearance; credibility; self-stigma; technical specifications. Common facilitators were ease of use, clinical benefit and feeling safe with the device. CONCLUSION: The efforts of patients, carers and clinicians to adopt and use non-medical devices for the management of chronic breathlessness is impeded by lack of implementation research. Future research should improve knowledge of the barriers and facilitators to use. This would enhance understanding of how decision-making in patient-carer-clinician triads impacts on non-medical devices use for breathlessness management.

BackgroundChronic obstructive pulmonary disease (COPD) is a progressive, life-limiting illness that requires end-of-life care planning, yet remains under-served. Understanding barriers to advance care planning (ACP) from different specialties' perspectives will enable a co-ordinated, cross-disciplinary approach to improving ACP access.MethodsAustralia and New Zealand palliative care nurses were invited to complete an anonymous online cross-sectional survey. Questions tested knowledge of validated ACP-related practice indicators and canvassed perspectives on barriers to ACP in COPD. Data are described and free-text thematically analyzed.ResultsThe 90 participants had high knowledge and positive attitudes to ACP in COPD, however, lacked consensus as to whether patients want to know their prognosis or discuss treatment options and end-of-life wishes. 59% discussed ACP in more than half their patients with COPD, and 77% and 73% routinely initiated or followed-up these discussions. Key barriers included: lack of confidence and training in COPD; reluctance to distress patients and families; referral late in the disease course; lack of consensus on referral timing; and lack of patient and clinician understanding of COPD prognoses. Many reported that lack of consensus in the treating team, paired with prognostic uncertainty, precluded timely ACP engagement.ConclusionsPalliative care nurses have substantial knowledge and positive beliefs regarding ACP, however, some beliefs and practices lack alignment with qualitative data on patients' wishes in COPD. While palliative care nurses are well placed to facilitate early implementation for patients with advanced COPD, ACP training and practice guidelines specific to COPD may increase implementation in this life-limiting disease.

Lung cancer is the most common cancer and leading cause of cancer mortality globally. Lung cancer is associated with significant morbidity, with symptoms often being poorly managed, causing significant symptom burden for both patients and their family caregivers. In people with life-limiting illnesses including advanced cancer, palliative care has been effective in improving symptom control, physical and mental wellbeing, quality of life, and survivorship; with benefits extending to caregivers while in the role and subsequently. Earlier integration of palliative care within oncology may be associated with improved patient outcomes, and has been supported by two Lancet commissions and national guidelines. The evidence for its effectiveness, however, has been mixed across the cancer spectrum. The aim of this review was to evaluate the current evidence for the effectiveness of early integrated palliative care in improving outcomes for people with lung cancer and their caregivers. Meta-analyses were performed where studies used the same measure. Otherwise, synthesis used a narrative approach. Similar to other types of advanced cancer, this review reveals mixed evidence for the effectiveness of early referral to palliative care and for the effectiveness of individual palliative interventions for people with lung cancer and their caregivers. Evidence that on-demand palliative care is equally, if not more effective than palliative care that is routinely provided, raises the question whether initiation and provision of palliative care as part of multidisciplinary lung cancer care ought to be guided by an early referral or need-based referral. Better understanding of what constitutes palliative care when delivered to people with lung cancer and their caregivers will help delineate the correlation with reported outcomes for these populations.

BACKGROUND:Chronic obstructive pulmonary disease and lung cancer are both life-limiting diseases that confer burden in the form of symptoms and affect functioning and quality of life. Comparing burden between these diseases is of interest to determine whether people with chronic obstructive pulmonary disease require improved access to Specialist Palliative Care. Access should be based on needs rather than diagnosis or prognosis but is limited for people with chronic obstructive pulmonary disease compared to lung cancer. AIM:The aim of this study was to synthesise research comparing burden from chronic obstructive pulmonary disease and lung cancer to estimate relative need for Specialist Palliative Care. DESIGN:A systematic review was conducted of observational quantitative studies published in English peer-reviewed journals comparing burden from chronic obstructive pulmonary disease and lung cancer (PROSPERO CRD42018108819). No limits were placed on disease stage. Meta-analyses were performed where studies used the same measure; otherwise, synthesis used a narrative approach. Risk of bias was assessed using the Agency for Healthcare Research and Quality tool. DATA SOURCES:Electronic databases were searched in September 2019. RESULTS:Of 790 articles returned, 13 were included, reporting 11 studies. Risk of bias was generally moderate. Except for pain, burden tended to be at least as substantial from chronic obstructive pulmonary disease as from lung cancer, with breathlessness and impacts on functioning being significantly worse. Longitudinal studies suggest that people with chronic obstructive pulmonary disease live with burden for longer. CONCLUSION:Efforts should be made to ensure that access to Specialist Palliative Care is commensurate with chronic obstructive pulmonary disease's substantial and long-lasting burden. Future research should clarify whether managing burden in chronic obstructive pulmonary disease and lung cancer requires different approaches.

Purpose Opioids provide effective analgesia for most cancer patients, but little is known about individual-level opioid use after cancer diagnosis. We examined the patterns of and factors associated with opioid use in older people diagnosed with cancer. Methods We used the Department of Veterans' Affairs (DVA) client data linked with the New South Wales (NSW) Cancer Registry and the Repatriation Pharmaceutical Benefits Scheme data. We included people aged ≥65 years diagnosed with cancer in NSW, Australia in 2005 to 2015. We examined patterns of opioid use in the 12 months after cancer diagnosis and used cause-specific hazards models to examine factors associated with opioid use. Results Of 13 527 people diagnosed with cancer, 51% were dispensed opioids after their diagnosis. We observed the highest proportions of use in people diagnosed with pancreas, liver, or lung cancers. Opioid use was associated with female sex, younger age, more advanced degree of cancer spread, opioid use before cancer diagnosis, and multimorbidity. Forty-four percentages of all people dispensed opioids had a history of opioid use in the 12 months before their cancer diagnosis; these people had higher median number of different opioids and opioid dispensings, and a shorter time to first opioid dispensing than opioid-naive people. Conclusion Our study suggests that many older cancer patients were dispensed opioids before their cancer diagnosis. Previously opioid-treated people had more intense opioid use patterns after diagnosis than opioid-naïve people. Acknowledging the history of opioid use is important as it may complicate pain treatment in clinical practice.

PURPOSE:Assessing low-and middle-income countries' (LMICs') readiness to establish new radiotherapy services is an important but empirically understudied concept. The purpose of this study is to develop and confirm a core set of readiness requirements and criteria that can be used to gauge LMICs preparedness to establish radiotherapy services. METHODS:Based on a systematic review and semi-structured expert interviews, a pool of requirements and criteria were generated. To confirm or disconfirm these items, we adopted a synthesised member checking process, also known as participant validation. A purposive sampling strategy was used to recruit radiotherapy experts. Items were sent via email. Each item was reviewed by participants. Qualitative comments were analysed thematically. FINDINGS:Seven of the 17 experts who participated in an earlier semi-structured interview contributed to this participant validation study. The final version of the readiness self-assessment tool for LMICs establishing new radiotherapy services contains 37 requirements mapped into four readiness domains, grouped under the following categories: commitment; cooperation; capacity; and catalyst. Among 23 criteria for commitment domain, participants reviewed 22 as relevant for inclusion. The cooperation requirements considered important, included: "strategic planning team", "stakeholder involvement" and a "technical assistance plan". Capacity requirements, which were endorsed included: "responsible project manager"; "availability of radiotherapy expertise"; and "training for initial core staff". Participants' feedbacks supported the inclusion of all the requirements and criteria related to catalyst. CONCLUSION:The readiness self-assessment tool is a promising planning and evaluation tool for use by stakeholders interested in expanding access to radiotherapy services in LMICs.

© 2020 John Wiley & Sons Australia, Ltd Aims: The factors contributing to the establishment of high-quality radiotherapy services in low- and middle-income countries (LMICs) are poorly understood. The aim was to identify and describe barriers and facilitators to establishing and sustaining high-quality and accessible radiotherapy services in LMICs based on the experience of successful and unsuccessful attempts. Methods: An exploratory-descriptive qualitative study using semistructured telephone interviews was undertaken. Purposive and snowball sampling techniques were used to recruit participants. The World Health Organization Innovative Care for Chronic Conditions Framework informed the interview guide. A constant comparative data analysis approach was adopted. Findings: Seventeen participants were interviewed. Ten were working permanently in nine LMICs and seven were permanently employed in four high-income countries. Three themes were developed: committing to a vision of improving cancer care; making it happen and sustaining a safe service; and leveraging off radiotherapy to strengthen integrated cancer care. Identified barriers included lack of political leadership continuity, lack of a coordinated advocacy effort, non-Member State of the IAEA, lack of reliable epidemiological data, lack of a comprehensive budget and lack of local expertise. Facilitators identified included strong political support, vision champion, availability of a regulator, costed cancer control plan, diversified sources of funding, responsible project manager, adoption of evidence-based practice, strategic partnerships, motivation to provide patient-centered care, and availability of supportive technology. Conclusions: Assessing the level of readiness to establish and sustain a radiotherapy service is highly recommended. Future research is recommended to develop a readiness assessment tool for radiotherapy services implementation at LMICs.

PURPOSE:This study aimed to explore medication-related decision-making by health professionals from different disciplines and specialties caring for people with advanced dementia living in long-term care facilities, focusing on dilemmas associated with starting, continuing or deprescribing medications commonly regarded as potentially inappropriate. METHODS:Four focus groups were undertaken, each on a different medication type (antibiotics, lipid-lowering agents, opioids and acetylcholinesterase inhibitors). Transcripts underwent qualitative analysis using line by line inductive coding and then a person-centred framework to highlight themes across medication types. RESULTS:Sixteen participants participated in focus groups. Regardless of medication type or dilemma, results suggested decision-making for residents with advanced dementia should begin with discussing goals of care and engaging with families, and be viewed as an iterative process involving regular monitoring and adjustment. Decision-making was seen as requiring a dialectical approach involving multiple perspectives, with an emphasis on establishing communication between health professionals, family and the person with dementia to better understand goals/preferences for care. CONCLUSION:Inter-professional collaboration enables sharing of clinical experience/expertise, differing disciplinary perspectives and knowledge about the resident. Continuing a medication should be considered an active decision that carries as much responsibility as starting or deprescribing.

© 2019 Australian College of Nursing Ltd 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.

Aboriginal and Torres Strait Islander children experience a higher prevalence of disability and socio-economic disadvantage than other Australian children. Early intervention from across the health, education and social service sectors is vital for improving outcomes, but families face a number of barriers to service access which impede intervention. This study aimed to inform ways to improve access to services for families of urban-dwelling Aboriginal children with a range of disabilities. A qualitative approach was taken to explore providers' perceptions of factors that either impeded or enabled families' access to services. In this research, the term 'provider' refers to individuals who are employed in a range of sectors to deliver a service involving assessment or management of an individual with a disability. Semi-structured in-depth interviews with 24 providers were conducted. Data analysis was informed by the general inductive approach and then applied deductively to the candidacy framework to generate additional insights. Candidacy focuses on how potential users access the services they need and acknowledges the joint negotiation between families and providers regarding such access. Our research identified that candidacy was influenced by the historical legacy of colonisation and its ongoing socio-cultural impact on Aboriginal people, as well as funding and current policy directives. Enacting culturally sensitive and meaningful engagement to better understand families' needs and preferences for support, as well as support for providers to develop their understanding of family contexts, will contribute to facilitating service access for Aboriginal children with a disability.

© 2019 John Wiley & Sons, Ltd. 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.

© 2019, Springer Nature Switzerland AG. Background Medication reviews by pharmacists have been shown to identify and reduce drug-related problems in long-term care residents. Objective To explore pharmacist perspectives of the Australian Government funded pharmacist-conducted residential medication management review and its role improving the quality and safety of prescribing in long-term care, in particular for those living with advanced dementia. Setting Australian Long-term care pharmacists. Method A qualitative research methodology approach using semi-structured interviews was used, with participants pharmacists with Residential Medication Management Review experience. Interviews were recorded, transcribed and coded utilising a meta-model of Physician-Community Pharmacy Collaboration in medication review. Main outcome measure Pharmacists’ perspectives on the Residential Medication Management Review and how to improve the quality of reviews for residents with advanced dementia. Results Fifteen accredited pharmacists participated. The majority believed that the Residential Medication Management Review had the potential to improve the quality and safety of medicines but highlighted systemic issues that worked against collaborative practice. Participants emphasised the importance of three-way collaboration between general practitioners, pharmacists and nursing staff and highlighted key strategies for its optimisation. Conclusion Incorporating avenues for greater communication between team members can improve collaboration between health professionals and ultimately the quality of medication reviews.

© 2018, Springer Nature Switzerland AG. 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 dementia care.

Copyright © Cambridge University Press 2019. 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 and improve care.

© 2019 AJA Inc. Objective: To identify caregiving characteristics that are associated with financial stress in Australian carers of people with a chronic disease. Methods: Data were collected via the South Australian Health Omnibus, an annual population-based, cross-sectional survey. Individuals who provided care to someone with prevalent chronic conditions were asked about financial stress and caregiving characteristics. Results: Of 32.4% (988/3047) who were carers, 13.4% (132/988) experienced financial stress. Adjusting for age and household income, providing more than 20 hours of care per week (AOR = 2.39, 95% CI = 1.48-3.86), transport assistance (AOR = 1.89, 95% CI = 1.15-3.09) and assistance with household tasks (AOR = 1.92, 95% CI = 1.14-3.26) and caring for a person with a mental illness (AOR = 2.01, 95% CI = 1.24-3.28) were associated with a significant increase in odds of experiencing financial stress. Caring for a person with cancer (AOR = 0.49, 95% CI = 0.30-0.81) or dementia (AOR = 0.40, 95% CI = 0.21-0.76) was associated with decrease in odds. Conclusions: Financial stress was reported by more than 13% of carers, and factors other than household income were implicated.

© 2018, Swiss School of Public Health (SSPH+). Objectives: To appraise improvement strategies adopted by low- and middle-income countries to increase access to cancer treatments and palliative care; and identify the facilitators and barriers to implementation. Methods: A systematic review was conducted and reported in accordance with PRISMA statement. MEDLINE, CINAHL, and the Cochrane Library databases were searched. Bias was assessed using the Standards for Quality Improvement Reporting Excellence, and evidence graded using the Australian National Health and Medical Research Council system. Results: Of 3069 articles identified, 18 studied were included. These studies involved less than a tenth (n = 12, 8.6%) of all low- and middle-income countries. Most were case reports (58%), and the majority focused on palliative care (n = 11, 61%). Facilitators included: stakeholder engagement, financial support, supportive learning environment, and community networks. Barriers included: lack of human resources, financial constraints, and limited infrastructure. Conclusions: There is limited evidence on sustainable strategies for increasing access to cancer treatments and palliative care in low- and middle-income countries. Future strategies should be externally evaluated and be tailored to address service delivery; workforce; information; medical products, vaccines, and technologies; financing; and leadership and governance.

© 2018 The Author(s). Background: Health service change is difficult to achieve. One strategy to facilitate such change is the clinical pathway, a guide for clinicians containing a defined set of evidence-based interventions for a specific condition. However, optimal strategies for implementing clinical pathways are not well understood. Building on a strong evidence-base, the Psycho-Oncology Co-operative Research Group (PoCoG) in Australia developed an evidence and consensus-based clinical pathway for screening, assessing and managing cancer-related anxiety and depression (ADAPT CP) and web-based resources to support it - staff training, patient education, cognitive-behavioural therapy and a management system (ADAPT Portal). The ADAPT Portal manages patient screening and prompts staff to follow the recommendations of the ADAPT CP. This study compares the clinical and cost effectiveness of two implementation strategies (varying in resource intensiveness), designed to encourage adherence to the ADAPT CP over a 12-month period. Methods: This cluster randomised controlled trial will recruit 12 cancer service sites, stratified by size (large versus small), and randomised at site level to a standard (Core) versus supported (Enhanced) implementation strategy. After a 3-month period of site engagement, staff training and site tailoring of the ADAPT CP and Portal, each site will "Go-live", implementing the ADAPT CP for 12 months. During the implementation phase, all eligible patients will be introduced to the ADAPT CP as routine care. Patient participants will be registered on the ADAPT Portal to complete screening for anxiety and depression. Staff will be responsible for responding to prompts to follow the ADAPT CP. The primary outcome will be adherence to the ADAPT CP. Secondary outcomes include staff attitudes to and experiences of following the ADAPT CP, using the ADAPT Portal and being exposed to ADAPT implementation strategies, collected using quantitative and qualitative methods. Data will be collected at T0 (baseline, after site engagement), T1 (6 months post Go-live) and T2 (12 months post Go-live). Discussion: This will be the first cluster randomised trial to establish optimal levels of implementation effort and associated costs to achieve successful uptake of a clinical pathway within cancer care. Trial registration: The study was registered prospectively with the ANZCTR on 22/3/2017. Trial ID ACTRN12617000411347

© 2018, Mary Ann Liebert, Inc. Background: Prescribing medications for nursing home residents with advanced dementia should focus on optimizing function and comfort, reducing unnecessary harms and aligning care goals with a palliative approach. Objective: The aim of the study was to estimate the proportion of Australian nursing home residents with advanced dementia receiving potentially inappropriate medications, and identify those most commonly prescribed and factors associated with their use. Design: Data were collected through retrospective audit of medication charts. Setting/Subjects: Two hundred eighteen nursing home residents with advanced dementia from 20 nursing homes participated in a cluster-randomized controlled trial of case conferencing (the IDEAL Study) from June 2013 to December 2014. Measurements: Inappropriate drug use was defined as medications classified as "never appropriate" by the Palliative Excellence in Alzheimer Care Efforts (PEACE) program criteria. Generalized linear mixed models were used to identify variables predicting use of "never" appropriate medications. Results: Over a quarter (n = 65, 30%) of residents received at least one medication classed as "never" appropriate, the most common being lipid-lowering agents (n = 38, 17.4%), antiplatelet agents (n = 18, 8.3%), and acetylcholinesterase inhibitors (n = 16, 7.3%). Residents who had been at the nursing home for ≤10 months (odds ratio [OR] 5.60, 95% confidence interval [CI] 1.74-18.06) and 11-21 months (OR 5.41, 95% CI 1.67-17.75) had significantly greater odds of receiving a never appropriate medication compared with residents who had been at the nursing home for >5 years. Conclusions: Use of potentially inappropriate medications in Australian nursing home residents with advanced dementia is common. A greater understanding of the rationale that underpins prescribing of medications is required.

© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted. Background: The importance of measuring the quality of end-of-life care provision is undisputed, but determining how best to achieve this is yet to be confirmed. This study sought to identify and describe national end-of-life care quality indicators and supporting policies used by countries leading in their end-of-life care provision. Methods: A systematic environmental scan that included a web search to identify relevant national policies and indicators; hand searching for additional materials; information from experts listed for the top 10 (n=15) countries ranked in the 'quality of care' category of the 2015 Quality of Death Index study; and snowballing from Index experts. Findings: Ten countries (66%) have national policy support for end-of-life care measurement, five have national indicator sets, with two indicator sets suitable for all service providers. No countries mandate indicator use, and there is limited evidence of consumer engagement in development of indicators. Two thirds of the 128 identified indicators are outcomes measures (62%), and 38% are process measures. Most indicators pertain to symptom management (38%), social care (32%) or care delivery (27%). Interpretations: Measurement of end-of-life care quality varies globally and rarely covers all care domains or service providers. There is a need to reduce duplication of indicator development, involve consumers, consider all care providers and ensure measurable and relevant indicators to improve end-of-life care experiences for patients and families.

Copyright © 2017 John Wiley & Sons, Ltd. Objective: Testicular cancer (TC) affects young men and may cause psychological distress despite a good prognosis. This systematic review evaluated the prevalence, severity, and correlates of anxiety, depression, fear of cancer recurrence (FCR), and distress in TC survivors. Methods: A systematic search of literature published 1977 to 2017 was conducted to find quantitative studies including TC survivor–reported outcomes relevant to review objectives. The quality of included articles was assessed, and a narrative synthesis conducted. Results: Of 6717 articles identified, 66 (39 good, 20 fair, and 7 poor quality) reporting results from 36 studies were included. Testicular cancer survivors' mean anxiety levels were higher than in the general population, while mean depression and distress were no different. Clinically significant anxiety (≈1 in 5) and to a lesser extent distress (≈1 in 7), but not depression, were more prevalent in TC survivors than the general population. Approximately 1 in 3 TC survivors experienced elevated FCR. Poorer psychological outcomes were more common among TC survivors who were single, unemployed/low socio-economic status, suffering from co-morbidities, experiencing worse symptoms/side effects, and using passive coping strategies. Conclusions: Many TC survivors do not experience significant psychological morbidity, but anxiety and FCR are prevalent. Inadequate coping resources (eg, low socio-economic status and social support) and strategies (eg, avoidance) and greater symptoms/side effects were associated with poorer outcomes. Theoretically driven prospective studies would aid understanding of how outcomes change over time and how to screen for risk. Age and gender appropriate interventions that prevent and manage issues specific to TC survivors are also needed.

© 2016, © The Author(s) 2016. Background: Despite most expected deaths occurring in hospital, optimal end-of-life care is not available for all in this setting. Aim: To gain a richer and deeper understanding of elements of end-of-life care that consumers consider most important within the hospital setting. Design: A meta-synthesis. Data sources: A systematic search of Academic Search Complete, AMED, CINAHL, MEDLINE, EMBASE, PsycINFO, PubMed, Google, Google Scholar and CareSearch for qualitative studies published between 1990 and April 2015 reporting statements by consumers regarding important elements of end-of-life hospital care. Study quality was appraised by two independent researchers using an established checklist. A three-stage synthesis approach focusing on consumer quotes, rather than primary author themes, was adopted for this review. Results: Of 1922 articles, 16 met the inclusion criteria providing patient and family data for analysis. Synthesis yielded 7 patient and 10 family themes including 6 common themes: (1) expert care, (2) effective communication and shared decision-making, (3) respectful and compassionate care, (4) adequate environment for care, (5) family involvement and (6) financial affairs. Maintenance of sense of self was the additional patient theme, while the four additional family themes were as follows: (1) maintenance of patient safety, (2) preparation for death, (3) care extending to the family after patient death and (4) enabling patient choice at the end of life. Conclusion: Consumer narratives help to provide a clearer direction as to what is important for hospital end-of-life care. Systems are needed to enable optimal end-of-life care, in accordance with consumer priorities, and embedded into routine hospital care.

A systematic review is a useful method to answer a research question where prior studies have been conducted. A well-designed and executed systematic review can inform policy and/or practice change. It can also identify gaps and generate new research questions. Although the requirements considered essential for conducting a rigorous systematic review are well defined in the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement, the approaches taken to synthesize the data vary. This case study describes the narrative synthesis of heterogeneous quantitative studies and the meta-synthesis of qualitative studies used to answer a complex research question from the consumer perspective. The study design focused on the analysis of consumer data only. As a result, the synthesis of both quantitative data and qualitative data has provided a detailed insight into consumers' unique perspectives and needs. The synthesis approach for both datasets is described, and linkages to key tools and resources to help facilitate this approach are provided. Processes used by the research team to enable effective research governance and collaboration throughout are also detailed.

© 2017 National Kidney Foundation, Inc. Background Advance care planning (ACP) empowers patients to consider and communicate their current and future treatment goals. However, ACP is not widely implemented in chronic kidney disease (CKD) care settings. This study aims to describe clinicians’ beliefs, challenges, and perspectives of ACP in patients with CKD. Study Design Qualitative study. Setting & Participants Nephrologists (n = 20), nurses (n = 7), and social workers (n = 4) with a range of experience in facilitating ACP for patients with CKD across Australia. Methodology Semistructured interviews were digitally recorded and transcribed verbatim. Analytical Approach Transcripts were analyzed using thematic analysis. Results 5 major themes were identified: facilitating informed decision making (avoiding preconceptions, conveying complete truths, focusing on supportive care, and synchronizing with evolving priorities), negotiating moral boundaries (contending with medical futility and respecting patient vs family autonomy), navigating vulnerable conversations (jeopardizing the therapeutic relationship, compromising professional confidence, emotionally invested, and enriching experiences), professional disempowerment (unsupportive culture, doubting logistical feasibility, and making uncertain judgments), and clarifying responsibilities (governing facilitation, managing tensions, and transforming multidisciplinary relationships). Limitations Some findings may be specific to the Australian context. Conclusions The tensions among themes reflect that ACP is paradoxically rewarding for clinicians because ACP empowers patients yet can expose personal and professional vulnerabilities. Clinicians believe that a more collaborative approach is needed, with increased efforts to identify the evolving and individualized needs and goals of patients with CKD. Models of ACP that address clinicians’ personal and professional vulnerabilities when initiating ACP may foster greater confidence and cultural acceptance of ACP in the CKD setting.

© 2016 Royal Australasian College of Physicians Background: Australian clinical trials are planned to evaluate medicinal cannabis in a range of clinical contexts. Aims: To explore the preferences, attitudes and beliefs of patients eligible and willing to consider participation in a clinical trial of medicinal cannabis for poor appetite and appetite-related symptoms from advanced cancer. Methods: A cross-sectional anonymous survey was administered from July to December 2015 online and in eight adult outpatient palliative care and/or cancer services. Respondents were eligible if they were ≥18 years, had advanced cancer and poor appetite/taste problems/weight loss and might consider participating in a medicinal cannabis trial. Survey items focused on medicinal rather than recreational cannabis use and did not specify botanical or pharmaceutical products. Items asked about previous medicinal cannabis use and preferences for delivery route and invited comments and concerns. Results: There were 204 survey respondents, of whom 26 (13%) reported prior medicinal cannabis use. Tablets/capsules were the preferred delivery mode (n = 144, 71%), followed by mouth spray (n = 84, 42%) and vaporiser (n = 83, 41%). Explanations for preferences (n = 134) most commonly cited convenience (n = 66; 49%). A total of 82% (n = 168) of respondents indicated that they had no trial-related concerns, but a small number volunteered concerns about adverse effects (n = 14) or wanted more information/advice (n = 8). Six respondents volunteered a belief that cannabis might cure cancer, while two wanted assurance of efficacy before participating in a trial. Conclusion: Justification of modes other than tablets/capsules and variable understanding about cannabis and trials will need addressing in trial-related information to optimise recruitment and ensure that consent is properly informed.

Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved. Purpose of review This article discusses the available information on providing palliative care for cardiovascular disease (CVD) for individuals from culturally and linguistically diverse populations, and argues the need for cultural competence and awareness of healthcare providers. Recent findings The burden of CVD is increasing globally and access to palliative care for individuals and populations is inconsistent and largely driven by policy, funding models, center-based expertise and local resources. Culture is an important social determinant of health and moderates health outcomes across the life trajectory. Along with approachability, availability, accommodation, affordability and appropriateness, culture moderates access to services. Health disparities and inequity of access underscore the importance of ensuring services meet the needs of diverse populations and that care is provided by individuals who are culturally competent. In death and dying, the vulnerability of individuals, families and communities is most pronounced. Using a social-ecological model as an organising framework, we consider the evidence from the literature in regard to the interaction between the individual, interpersonal relationships, community and society in promoting access to individuals with cardiovascular disease. Summary This review highlights the need for considering individual, provider and system factors to tailor and target healthcare services to the needs of culturally diverse populations. Beyond translation of materials, there is a need to understand the cultural dimensions influencing health-seeking behaviors and acceptance of palliative care and ensuring the cultural competence of health professionals in both primary and specialist palliative care.

© 2016 Asian Pacific Society of Nephrology Aim: Advance care planning (ACP) in nephrology is widely advocated but not always implemented. The aims of this study were to describe current ACP practice and identify barriers/facilitators and perceived need for health professional education and chronic kidney disease (CKD)-specific approaches. Methods: An anonymous cross-sectional survey was administered online. Nephrology health professionals in Australia and New Zealand were recruited via professional societies, email lists and nephrology conferences. Multiple regression explored the influence of respondents' attributes on extent of involvement in ACP and willingness to engage in future. Results: A total of 375 respondents included nephrologists (23%), nurses (65%), social workers (4%) and others (8%) with 54% indicated that ACP at their workplace was performed ad hoc and 61% poorly. Perceived barriers included patient/family discomfort (84%), difficulty engaging families (83%), lack of clinician expertise (83%) and time (82%), health professional discomfort (72%), cultural/language barriers (65%), lack of private space (61%) and lack of formal policy/procedures (60%). Respondents overwhelmingly endorsed the need for more dialysis-specific ACP programs (96%) and education (95%). Whilst 85% thought ACP would be optimally performed by specially trained staff, comments emphasized that all clinicians should have a working proficiency. Respondents who were more willing to engage in future ACP tended to be non-physicians (odds ratio (OR) 4.96, 95% confidence intervals (CI) 1.74–14.07) and reported a greater need for CKD-specific ACP materials (OR 10.88, 95% CI 2.38–49.79). Conclusion: Advance care planning in nephrology needs support through education and CKD-specific resources. Endorsement by nephrologists is important. A multidisciplinary approach with a gradient of ACP expertise is also recommended.

© 2015 Wiley Publishing Asia Pty Ltd. Aim: To develop clinical practice guidelines for screening, assessing and managing cancer pain in Australian adults. Methods: This three-phase project utilized the ADAPTE approach to adapt international cancer pain guidelines for the Australian setting. A Working Party was established to define scope, screen guidelines for adaptation and develop recommendations to support better cancer pain control through screening, assessment, pharmacological and non-pharmacological management, and patient education. Recommendations with limited evidence were referred to Expert Panels for advice before the draft guidelines were opened for public consultation via the Cancer Council Australia Cancer Guidelines Wiki platform in late 2012. All comments were reviewed by the Working Party and the guidelines were revised accordingly. Results: Screening resulted in six international guidelines being included for adaptation - those developed by the Scottish Intercollegiate Guidelines Network (2008), National Health Service Quality Improvement Scotland (2009), National Comprehensive Cancer Network (2012), European Society of Medical Oncology (2011), European Association for Palliative Care (2011, 2012) and National Institute of Clinical Excellence (2012). Guideline adaptation resulted in 55 final recommendations. The guidelines were officially launched in November 2013. Conclusion: International guidelines can be efficiently reconfigured for local contexts using the ADAPTE approach. Availability of the guidelines via the Cancer Council Australia Wiki is intended to promote uptake and enable recommendations to be kept up to date. Resources to support implementation will also be made available via the Wiki if found to be effective by a randomized controlled trial commencing in 2015.

© 2013 Australian College of Nursing Ltd. Background: Cancer pain remains a major public health concern. Despite effective treatments being available to manage the majority of cancer pain, this debilitating symptom is frequently under treated. As cancer has becomes a chronic disease a range of health professionals, including community nurses in Australia are increasingly caring for people living with cancer related pain. Yet, little is known about community nurses capacity to assess and manage cancer pain in accordance with best available evidence. Objectives: This study aimed to: identify the barriers and facilitators to adult cancer pain assessment and management as perceived by Australian health professionals; identify if cancer pain guidelines are currently used; identify barriers and facilitators to guideline use; and establish the need for Australian cancer pain guidelines. This article reports on community nurses' perceptions of managing cancer pain in the community setting. Methods: A cross-sectional survey was administered online. Invitations were circulated via peak bodies and clinical leaders seeking the views and experiences of health professionals involved in caring for people living with cancer pain. Descriptive statistics were used to summarise the quantitative data, and thematic content analysis were used to describe the qualitative data. Results: Sixty-two community nurses responded to the survey, representing 29% of the total sample. These participants reported high levels of adherence to accepted cancer pain management practices in their workplace, with 71% nominating the Palliative Care Therapeutic Guideline V.3 as being most frequently used to manage community patients' cancer related pain. Key barriers to effective cancer pain management in the community were: difficulties accessing non-pharmacological interventions (89%), lack of coordination by multiple providers (89%), and impact of distance on ability to access pain-related services for patients (86%). Conclusion: A range of system, health professional and consumer barriers limit access to best available treatment in the community setting for people with cancer pain. A clinical pathway that gives step-by-step guidance on evidence-based practice along with an evaluation framework may be the best way of enabling community nurses to ensure their patients with cancer related pain have access to best available care.

There is consensus that survivorship care should be integrated, risk or needs stratified, individualised, coordinated and multidisciplinary. But further research is needed to determine the service models that can best deliver optimal outcomes in the most cost-effective way. Model heterogeneity and diversity is needed to address issues that are disease, treatment or symptom specific, and account for other modifying influences such as comorbid illness and lifestyle. Further work is needed to determine the key elements within models of care configured to support cancer survivors that positively influence outcomes, and how these elements can be best delivered across a diverse range of care settings. In the meantime, adopting a needs based approach to care at the individual patient level will ensure that those in most need have access to relevant support and care from specialist palliative care services. Fortunately, current Australian health reforms provide a climate of plasticity and innovation that is conducive to the paradigm shifts required.

© 2014 Australian College of Nursing Ltd. Background: Models of palliative care need to address the unmet needs of children, young people and families. Objective: To undertake an integrative review to identify the key elements of optimal paediatric palliative care from the perspectives of children and young people with palliative care needs and their parents. Data sources: Electronic databases including CINAHL, Medline, PsycINFO and AMED searched using combined terms for palliative care, service models and children along with reference lists of included studies. Study selection: Peer reviewed empirical studies reporting on evaluation of paediatric palliative care by children and young people with palliative care needs (0-19 years), or their families, published in English, between 2000 and 2013. The views of health professionals and grey literature were excluded. Quality appraisal completed by two researchers, consensus reached following discussion. Data extraction and synthesis: Data extracted by two researchers, entered into an electronic proforma and synthesised using a narrative approach. Results: Seven studies were identified of which two were quantitative, one was qualitative and four were mixed methods. Synthesis highlighted the need for tailored support enabling flexibility in care, with specific reference to location of care and access to psychosocial support, 24. h specialist support, respite care and sibling support. Conclusions: Paediatric palliative care should be flexible, responsive and tailored to the needs of children and their families. Robust evaluation of models of care that incorporate these elements is required to inform optimal care.