Patient-reported use of pancreatic enzyme replacement treatment (PERT) in pancreatic cancer in New Zealand and Australia: a cross-sectional survey study.

PURPOSE: This study investigated pancreatic enzyme replacement therapy (PERT) use in people diagnosed with pancreatic cancer in New Zealand (NZ) and Australia (AU). METHODS: A cross-sectional survey study was conducted using a mixed-media campaign to recruit people with pancreatic cancer and collect information about current PERT use. The questionnaire gathered data on participant demographics, awareness of PERT, prescribing practices and efficacy of enzyme replacement. RESULTS: Over 300 people with pancreatic cancer were recruited, 135 from New Zealand and 199 from Australia. Every region, state and territory was represented except for the West Coast (NZ) and the Northern Territory (AU), the lowest populated areas in both countries. In New Zealand, 60% of participants had heard about PERT, compared to 69.3% in Australia. Dosing regimens were inconsistent in both countries, with 18% and 27% of participants being prescribed PERT considered best practice in New Zealand and Australia, respectively. Before PERT commencement, 70% of participants experienced symptoms of malabsorption, with all symptoms improving after therapy was established. The majority of participants were compliant with their medication. CONCLUSION: PERT use in pancreatic cancer in New Zealand and Australia was highly variable and not compliant with international guidelines in which PERT is recommended as standard therapy. Enzyme replacement is effective for improving the symptoms of malabsorption in patients with pancreatic cancer. Clinician education may be needed to help improve the use of PERT in people with pancreatic cancer.

Survivorship care for people affected by advanced or metastatic cancer: MASCC-ASCO standards and practice recommendations.

PURPOSE: People with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared to those with early-stage disease or those nearing the end-of-life. These MASCC-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer. METHODS: An expert panel comprising MASCC and ASCO members was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting: (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process. RESULTS: A systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including 8 people with lived experience) across 33 countries (33% were low-to-middle resource countries) participated in the Delphi study and achieved ≥ 94.8% agreement for seven standards (1. Person-Centred Care; 2. Coordinated and Integrated Care; 3. Evidence-Based and Comprehensive Care; 4. Evaluated and Communicated Care; 5. Accessible and Equitable Care; 6. Sustainable and Resourced Care; 7. Research and Data-Driven Care) and ≥ 84.2% agreement across 45 practice recommendations. CONCLUSION: Standards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards will support optimization of health outcomes and care experiences by providing guidance to stakeholders in cancer care (healthcare professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers. Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.

"You're the only thing he comes out [of his room] for": A qualitative study of engagement between Laughter Care Specialists and families of people with dementia in long-term care.

OBJECTIVES: Family involvement in the lives of people who have dementia and live in long-term care is important, but family members may face challenges communicating and connecting with their loved one as dementia progresses. A type of therapeutic humor (Laughter Care) delivered by trained specialists aims to engage people with dementia who reside in long-term care through creative play and laughter. This study aimed to explore the perceptions of Laughter Care Specialists (LCSs) regarding families' engagement with the program. METHODS: Semi-structured interviews were conducted with LCSs (n = 8) and analyzed inductively using thematic analysis. RESULTS: Family members were reported to initially have varied degrees of openness toward Laughter Care, but often become more accepting after observing positive engagement with the person with dementia. Family members were perceived to benefit from the program through witnessing the person with dementia enjoy joyous and light interactions, learn new ways of communicating and connecting with the person with dementia, and engage in positive interactions at end of life. SIGNIFICANCE OF RESULTS: Laughter Care may provide family members with novel ways of communicating and connecting with people who have dementia at end of life as well as comfort into bereavement.

Defining research priorities and needs in cancer symptoms for adults diagnosed with cancer: an Australian/New Zealand modified Delphi study.

PURPOSE: This study asked consumers (patients, carers) and healthcare professionals (HCPs) to identify the most important symptoms for adults with cancer and potential treatment interventions. METHODS: A modified Delphi study was conducted involving two rounds of electronic surveys based on prevalent cancer symptoms identified from the literature. Round 1 gathered information on participant demographics, opinions and/or experience on cancer symptom frequency and impact, and suggestions for interventions and/or service delivery models for further research to improve management of cancer symptoms. In Round 2, respondents ranked the importance of the top ten interventions identified in Round 1. In Round 3, separate expert panels of consumers and healthcare professionals (HCPs) attempted to reach consensus on the symptoms and interventions previously identified. RESULTS: Consensus was reached for six symptoms across both groups: fatigue, constipation, diarrhoea, incontinence, and difficulty with urination. Notably, fatigue was the only symptom to reach consensus across both groups in Round 1. Similarly, consensus was reached for six interventions across both groups. These were the following: medicinal cannabis, physical activity, psychological therapies, non-opioid interventions for pain, opioids for breathlessness and cough, and other pharmacological interventions. CONCLUSIONS: Consumers and HCPs prioritise differently; however, the symptoms and interventions that reached consensus provide a basis for future research. Fatigue should be considered a high priority given its prevalence and its influence on other symptoms. The lack of consumer consensus indicates the uniqueness of their experience and the need for a patient-centred approach. Understanding individual consumer experience is important when planning research into better symptom management.

Exploring the practicality and acceptability a brief exercise communication and clinician referral pathway in cancer care: a feasibility study.

BACKGROUND: The majority of cancer patients and cancer care clinicians-CCCs (e.g., oncologists) believe that exercise is an important adjunct therapy that should be embedded in standard practice. Yet, CCCs do not routinely discuss exercise with their patients, nor do they regularly refer them to exercise professionals (e.g., exercise physiologists-EPs). This study evaluated the feasibility and acceptability of an evidence-based approach to improving exercise communication between CCCs and their patients, including an exercise referral pathway. METHODS: Implementation and testing of the Exercise Communication and Referral Pathway (ECRP) occurred in Sydney, Australia. The ECRP included a brief oncology-initiated communication exchange with patients, CCC exercise referral to an EP, followed by EP-initiated telephone consultation with patients concerning tailored exercise advice. Participant perceptions concerning the feasibility and applicability of the ECPR were evaluated. Semi-structured interviews were conducted with CCCs (n = 3), cancer patients (n = 21), and an EP (n = 1). Inductive thematic analysis was undertaken. RESULTS: Analysis generated three themes: (1) Navigating the role of CCCs in the ECRP, suggesting that oncology-initiated communication is a cue to action, however there was a lack of role clarity regarding exercise referral; (2) Implementing Patient-Orientated Care within a Standardised Pathway, highlighting the need for tailored information and advice for patients that reflects individual disease, socio-cultural, and environmental factors, and; (3) Taking Steps Towards Action, revealing the need for structural (e.g., EP initiated contact with patients) and policy changes (i.e., changes to Medicare, direct oncologist referral) to engage patients and better integrate exercise as part of standard care. CONCLUSIONS: Findings provide important insights into improving oncology-patient exercise communication and developing an exercise referral pathway to increase engagement and patient reach. However, individual (e.g., experience, knowledge) and contextual factors (e.g., time, resources) need consideration when implementing an ECRP. TRIAL REGISTRATION: This trial was prospectively registered with the Australian New Zealand Clinical (#ACTRN12620000358943) on March 13, 2020.

Experience and acceptability of a carer-focussed intervention in acute oncology settings: A qualitative study of people with advanced cancer and their carers.

OBJECTIVES: Providing optimal support for carers of people with advanced cancer is critical to facilitating discharge home from hospital. Carer Support Needs Assessment Tool-Intervention (CSNAT-I) has shown promise in supporting carers' needs in this context. This study aimed to explore patient and carers experiences with and views on the acceptability of the CSNAT-I delivered by occupational therapists in an acute oncology setting. METHODS: People with advanced cancer and their carers who had previously received the CSNAT-I as part of usual care while admitted to an Australian specialist cancer centre or acute hospital were invited to participate in interviews exploring their perceptions of the intervention. Data were analysed thematically. RESULTS: Two patients and 10 carers participated in semi-structured interviews. Three themes were constructed from the data: Carers viewed the CSNAT-I as comprehensive process that (1) 'covered everything' related to discharge planning; (2) generated an 'increased awareness of needs' for themselves, patients, and clinicians; and (3) triggered an emotional response of feeling 'wrapped up in care' that was maintained as they moved from hospital to home. CONCLUSION: This study has demonstrated that the CSNAT-I was highly acceptable to carers as part of existing discharge processes supporting them through the transition from hospital to home and can be delivered by occupational therapists and other clinicians with a natural synergy to discharge planning. These findings will inform further development and testing of the delivery model of the CSNAT-I in future trials.

Care of older people and people requiring palliative care with COVID-19: guidance from the Australian National COVID-19 Clinical Evidence Taskforce.

INTRODUCTION: Older people living with frailty and/or cognitive impairment who have coronavirus disease 2019 (COVID-19) experience higher rates of critical illness. There are also people who become critically ill with COVID-19 for whom a decision is made to take a palliative approach to their care. The need for clinical guidance in these two populations resulted in the formation of the Care of Older People and Palliative Care Panel of the National COVID-19 Clinical Evidence Taskforce in June 2020. This specialist panel consists of nursing, medical, pharmacy and allied health experts in geriatrics and palliative care from across Australia. MAIN RECOMMENDATIONS: The panel was tasked with developing two clinical flow charts for the management of people with COVID-19 who are i) older and living with frailty and/or cognitive impairment, and ii) receiving palliative care for COVID-19 or other underlying illnesses. The flow charts focus on goals of care, communication, medication management, escalation of care, active disease-directed care, and managing symptoms such as delirium, anxiety, agitation, breathlessness or cough. The Taskforce also developed living guideline recommendations for the care of adults with COVID-19, including a commentary to discuss special considerations when caring for older people and those requiring palliative care. CHANGES IN MANAGEMENT AS RESULT OF THE GUIDELINE: The practice points in the flow charts emphasise quality clinical care, with a focus on addressing the most important challenges when caring for older individuals and people with COVID-19 requiring palliative care. The adult recommendations contain additional considerations for the care of older people and those requiring palliative care.

The Dilemma of Treating Delirium: the Conundrum of Drug Management.

OPINION STATEMENT: Delirium is a common medical complication in people living with cancer, particularly with more advanced disease. Delirium is associated with significant symptom burden which causes distress and impacts quality of life. As recommended by international guidelines, a high degree of suspicion is needed to ensure delirium is detected early. Attention to collateral history can provide clues to changes in cognition and attention. Non-pharmacological approaches that can be considered essential elements of care are effective in reducing the risk of delirium. Delirium screening using a validated measure is recommended as even expert clinicians can underdiagnose or miss delirium. The diagnostic assessment requires consideration of the cancer diagnosis and comorbidities, in the context of potential reversibility, goals of care, and patient preferences. The gold standard approach based on expert consensus is to institute management for delirium precipitants supported by non-pharmacological essential care, with the support of an interdisciplinary team. Medication management should be used sparingly and for a limited period of time wherever possible for severe perceptual disturbance or agitation which has not improved with non-pharmacological approaches. Clinicians should be familiar with the registered indication for medications and seek informed consent for off-label use. All interventions put in place to manage delirium need to consider net clinical benefit, including harms such as sedation and loss of capacity for meaningful interaction. Clear communication and explanation are needed regularly, with the person with delirium as far as possible and with surrogate decision makers. Delirium can herald a poor prognosis and this needs to be considered and be discussed as appropriate in shared decision-making. Recall after delirium has resolved is common, and opportunity to talk about this experience and the related distress should be offered during the period after recovery.

Efficacy of medicinal cannabis for appetite-related symptoms in people with cancer: A systematic review.

BACKGROUND: Anorexia (loss of appetite) is a prevalent and distressing symptom in people with cancer, with limited effective interventions. Medicinal cannabis has shown promise in improving appetite-related symptoms in people with cancer. AIM: To assess the efficacy of medicinal cannabis for improving appetite-related symptoms in people with cancer, considering measures and outcomes, interventions and toxicity. DESIGN: Systematic review with narrative approach to synthesis and meta-analysis. DATA SOURCES: Databases (MEDLINE, CINAHL, CENTRAL), websites and trials registries were searched from inception to February 2021. Included studies were randomised controlled trials (RCT) in English peer-reviewed journals comparing medicinal cannabis with placebo and/or another intervention. Study quality was assessed using the Cochrane risk of bias tool. RESULTS: Five studies were included that compared medicinal cannabis interventions (dronabinol, nabilone and cannabis extract) either with placebo (n = 4) or megestrol acetate (n = 1). Measures and trial endpoints varied, but efficacy was demonstrated in one trial only, in which dronabinol significantly improved chemosensory perception and other secondary outcomes (taste of food, premeal appetite, proportion of calories consumed as protein) compared with placebo. Cannabis interventions were generally well tolerated across studies, regardless of the product or dose, although the comprehensive measurement of toxicities was limited. CONCLUSION: Evidence from RCTs that medicinal cannabis increases appetite in people with cancer is limited. Measures, outcomes and interventions were variable, and toxicities have not been comprehensively evaluated. Future research should carefully consider biological mechanisms to guide more nuanced selection of endpoints and interventions, including product, dose and administration.

Investigating the benefits and harms of hypodermoclysis of patients in palliative care: A consecutive cohort study.

BACKGROUND: Palliative populations are at risk for dehydration which can cause discomfort, distress and cognitive symptoms. Subcutaneous hydration ('hypodermoclysis') has been used as an alternative administration route to the more invasive intravenous route, but research is lacking on its net clinical effects (harms and benefits) for palliative populations, particularly in real world settings. AIM: To quantify prospectively the net clinical effects of hypodermoclysis in palliative patients with advanced disease who required supplementary fluids. DESIGN: Multisite, multinational consecutive cohort study. SETTING/PARTICIPANTS: Patients receiving hypodermoclysis in an inpatient palliative care setting. RESULTS: Twenty sites contributed data for 99 patients, of which 88 had complete benefits and harms data. The most common primary target symptom for infusion was generalised weakness (18.2%), and the most common non-symptom indication was supplemental hydration (31.8%). Benefits were experienced in 33% of patients in their primary target symptom, and in any symptom in 56.8%. Harms were experienced in 38.7% of patients (42% at Grade 1). Benefits increased with higher performance status, while harms were more frequent in patients with lower performance status (Australia-modified Karnofsky performance status ⩽40). Patients in the terminal phase of their illness experienced the least benefit (15.4% in any indication only) and had more frequent harms (38%). CONCLUSIONS: Hypodermoclysis may improve certain symptoms in patients in palliative care but frequency of harms and benefits may differ at certain timepoints in the illness trajectory. Further research is needed to better delineate which patients will derive the most net clinical benefit from hypodermoclysis.

Caring for depression in the dying is complex and challenging - survey of palliative physicians.

BACKGROUND: Depression is prevalent in people with very poor prognoses (days to weeks). Clinical practices and perceptions of palliative physicians towards depression care have not been characterised in this setting. The objective of this study was to characterise current palliative clinicians' reported practices and perceptions in depression screening, assessment and management in the very poor prognosis setting. METHODS: In this cross-sectional cohort study, 72 palliative physicians and 32 psychiatrists were recruited from Australian and New Zealand Society of Palliative Medicine and Royal Australian and New Zealand College of Psychiatrists between February and July 2020 using a 23-item anonymous online survey. RESULTS: Only palliative physicians results were reported due to poor psychiatry representation. Palliative physicians perceived depression care in this setting to be complex and challenging. 40.0% reported screening for depression. All experienced uncertainty when assessing depression aetiology. Approaches to somatic symptom assessment varied. Physicians were generally less likely to intervene for depression than in the better prognosis setting. Most reported barriers to care included the perceived lack of rapidly effective therapeutic options (77.3%), concerns of patient burden and intolerance (71.2%), and the complexity in diagnostic differentiation (53.0%). 66.7% desired better collaboration between palliative care and psychiatry. CONCLUSIONS: Palliative physicians perceived depression care in patients with very poor prognoses to be complex and challenging. The lack of screening, variations in assessment approaches, and the reduced likelihood of intervening in comparison to the better prognosis setting necessitate better collaboration between palliative care and psychiatry in service delivery, training and research.

Effect of Regular, Low-Dose, Extended-release Morphine on Chronic Breathlessness in Chronic Obstructive Pulmonary Disease: The BEAMS Randomized Clinical Trial.

Importance: Chronic breathlessness is common in people with chronic obstructive pulmonary disease (COPD). Regular, low-dose, extended-release morphine may relieve breathlessness, but evidence about its efficacy and dosing is needed. Objective: To determine the effect of different doses of extended-release morphine on worst breathlessness in people with COPD after 1 week of treatment. Design, Setting, and Participants: Multicenter, double-blind, placebo-controlled randomized clinical trial including people with COPD and chronic breathlessness (defined as a modified Medical Research Council score of 3 to 4) conducted at 20 centers in Australia. People were enrolled between September 1, 2016, and November 20, 2019, and followed up through December 26, 2019. Interventions: People were randomized 1:1:1 to 8 mg/d or 16 mg/d of oral extended-release morphine or placebo during week 1. At the start of weeks 2 and 3, people were randomized 1:1 to 8 mg/d of extended-release morphine, which was added to the prior week's dose, or placebo. Main Outcomes and Measures: The primary outcome was change in the intensity of worst breathlessness on a numerical rating scale (score range, 0 [none] to 10 [being worst or most intense]) using the mean score at baseline (from days -3 to -1) to the mean score after week 1 of treatment (from days 5 to 7) in the 8 mg/d and 16 mg/d of extended-release morphine groups vs the placebo group. Secondary outcomes included change in daily step count measured using an actigraphy device from baseline (day -1) to the mean step count from week 3 (from days 19 to 21). Results: Among the 160 people randomized, 156 were included in the primary analyses (median age, 72 years [IQR, 67 to 78 years]; 48% were women) and 138 (88%) completed treatment at week 1 (48 in the 8 mg/d of morphine group, 43 in the 16 mg/d of morphine group, and 47 in the placebo group). The change in the intensity of worst breathlessness at week 1 was not significantly different between the 8 mg/d of morphine group and the placebo group (mean difference, -0.3 [95% CI, -0.9 to 0.4]) or between the 16 mg/d of morphine group and the placebo group (mean difference, -0.3 [95%, CI, -1.0 to 0.4]). At week 3, the secondary outcome of change in mean daily step count was not significantly different between the 8 mg/d of morphine group and the placebo group (mean difference, -1453 [95% CI, -3310 to 405]), between the 16 mg/d of morphine group and the placebo group (mean difference, -1312 [95% CI, -3220 to 596]), between the 24 mg/d of morphine group and the placebo group (mean difference, -692 [95% CI, -2553 to 1170]), or between the 32 mg/d of morphine group and the placebo group (mean difference, -1924 [95% CI, -47 699 to 921]). Conclusions and Relevance: Among people with COPD and severe chronic breathlessness, daily low-dose, extended-release morphine did not significantly reduce the intensity of worst breathlessness after 1 week of treatment. These findings do not support the use of these doses of extended-release morphine to relieve breathlessness. Trial Registration: ClinicalTrials.gov Identifier: NCT02720822.

Barriers to managing sleep disturbance in people with malignant brain tumours and their caregivers: a qualitative analysis of healthcare professionals' perception.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Sleep disturbance in people with brain tumours and caregivers: a survey of healthcare professionals' views and current practice.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Outcomes and measures of delirium interventional studies in palliative care to inform a core outcome set: A systematic review.

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.

Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan.

BACKGROUND: A primary brain cancer diagnosis is a distressing, life changing event. It adversely affects the quality of life for the person living with brain cancer and their families ('carers'). Timely access to evidence-based information is critical to enabling people living with brain cancer, and their carers, to self-manage the devastating impacts of this disease. METHOD: A systematic environmental scan of web-based resources. A depersonalised search for online English-language resources published from 2009 to December 2019 and designed for adults (> 25 years of age), living with primary brain cancer, was undertaken using the Google search engine. The online information was classified according to: 1) the step on the cancer care continuum; 2) self-management domains (PRISMS taxonomy); 3) basic information disclosure (Silberg criteria); 4) independent quality verification (HonCode); 5) reliability of disease and treatment information (DISCERN Sections 1 and 2); and readability (Flesch-Kincaid reading grade). RESULTS: A total of 119 online resources were identified, most originating in England (n = 49); Australia (n = 27); or the USA (n = 27). The majority of resources related to active treatment (n = 76), without addressing recurrence (n = 3), survivorship (n = 1) or palliative care needs (n = 13). Few online resources directly provided self-management advice for adults living with brain cancer or their carers. Just over a fifth (n = 26, 22%) were underpinned by verifiable evidence. Only one quarter of organisations producing resources were HonCode certified (n = 9, 24%). The median resource reliability as measured by Section 1, DISCERN tool, was 56%. A median of 8.8 years of education was required to understand these online resources. CONCLUSIONS: More targeted online information is needed to provide people affected by brain cancer with practical self-management advice. Resources need to better address patient and carer needs related to: rehabilitation, managing behavioural changes, survivorship and living with uncertainty; recurrence; and transition to palliative care. Developing online resources that don't require a high level of literacy and/or cognition are also required.

Managing haematology and oncology patients during the COVID-19 pandemic: interim consensus guidance.

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.

Delirium at the end of life.

Delirium is highly prevalent in people with advanced life limiting illness(es), and current evidence can inform how we provide best delirium care in this setting. Whilst strategies to prevent and reverse delirium are the cornerstones of optimal care, the care for delirious patients who are approaching the end of life and their families pose specific challenges particularly if delirium is refractory flagging a grave prognosis. These include addressing additional supportive care needs, clinical decision-making about the degree of investigation and intervention, minimising distress from the symptoms of delirium itself and considering other concurrent problems contributing to agitation. A fine balance is needed to address other symptoms such as pain whilst minimizing psychoactive medication load. There is need for regular and clear information and communication about prognosis and goals of care. Witnessing a delirium episode in a loved one in close proximity to death requires consideration of the needs of the family into bereavement care. Palliative care is person and family-centred care provided for a person with an active, progressive, advanced disease; who has little or no prospect of cure and who is expected to die, and for whom the primary treatment goal is to optimise quality of life. It is an approach which can be provided regardless of setting and diagnosis, and by both specialist palliative care teams and other health professionals.

Components of palliative care interventions addressing the needs of people with dementia living in long-term care: A systematic review.

BACKGROUND: People with dementia requiring palliative care have multiple needs, which are amplified in long-term care settings. The European Association for Palliative Care White Paper offers recommendations for optimal palliative care in dementia integral for this population, providing useful guidance to inform interventions addressing their specific needs. AIM: The aim of this study is to describe the components of palliative care interventions for people with dementia in long-term care focusing on shared decision-making and examine their alignment to the European Association for Palliative Care domains of care. DESIGN: Systematic review with narrative synthesis (PROSPERO ID: CRD42018095649). DATA SOURCES: Four databases (MEDLINE, CINAHL, PsycINFO and CENTRAL) were searched (earliest records - July 2019) for peer-reviewed articles and protocols in English, reporting on palliative care interventions for people with dementia in long-term care, addressing European Association for Palliative Care Domains 2 (person-centred) or 3 (setting care goals) and ⩾1 other domain. RESULTS: Fifty-one papers were included, reporting on 32 studies. For each domain (1-10), there were interventions found aiming to address its goal, although no single intervention addressed all domains. Domain 7 (symptom management; n = 19), 6 (avoiding overly aggressive treatment; n = 18) and 10 (education; n = 17) were the most commonly addressed; Domain 5 (prognostication; n = 7) and 4 (continuity of care; n = 2) were the least addressed. CONCLUSION: Almost all domains were addressed across all interventions currently offered for this population to various degrees, but not within a singular intervention. Future research optimally needs to be theory driven when developing dementia-specific interventions at the end of life, with the European Association for Palliative Care domains serving as a foundation to inform the best care for this population.

Assessing the exertion required to induce breathlessness in a population with advanced cancer: matching measures to the level of physical function.

BACKGROUND: The aim of the study was to assess four evidence-based assessments utilising exercise challenges that induce breathlessness, each with progressively less demanding levels of exertion, which can be tailored to people with a range of functional capabilities in the setting of advanced cancer for research studies. Functional cut off points for these assessments have not previously been defined. METHODS: A cross sectional study of four exercise tests attempted by all participants: 6 min walk test (6MWT); (derived) 2 min walk test (2MWT); arm exercises; and reading numbers aloud. Performance status (Australia-modified Karnofsky Performance Status (AKPS)), baseline breathlessness using the modified Medical Research Council (mMRC) breathlessness scale, and a visual analogue scale of intensity and unpleasantness of breathlessness were measured. Co-morbidity was codified using the Charlson Co-morbidity Index. Percentage of people completing each test by AKPS level of function and baseline mMRC breathlessness scores were quantified. RESULTS: In the 68 participants, poorer function decreased the proportion of people able to complete the exercise tests. For completion rates ≥80%, of 6MWT and 2MWT, only people with an AKPS 70-90 had completion. For arm exercises, this included people with an AKPS as low as ≥50; and for reading numbers, it included people with an AKPS of 40 but not below. CONCLUSIONS: Walking tests have poor utility in people with high levels of functional impairment. For people with high levels of dependence, reading numbers should be used in evaluating exercise-induced breathlessness in research studies. These data also suggest that people's exertional limitations have been under-estimated as cancer progresses.