Objective: To ascertain palliative physicians’ and consultation-liaison psychiatrists’ perceptions of depression care processes in patients with very poor prognoses, exploring key challenges and ...postulating solutions. Methods: A qualitative focus group study involving three 1-h online focus groups (2 palliative medicine and 1 psychiatry) were conducted between November-December 2020. Fellows and trainees were recruited from Australian and New Zealand Society of Palliative Medicine (n = 11) and Royal Australian and New Zealand College of Psychiatrists (n = 4). Data underwent conventional qualitative content analysis. Results: Participants perceived depression care to be complex and challenging. Perceived barriers included: inadequate palliative care psychiatry skills with variation in clinical approaches; lack of supportive health infrastructure (poor access to required interventions and suboptimal linkage between palliative care and psychiatry); lack of research support; and societal stigma. Suggested solutions included integrating care processes between palliative care and psychiatry to improve clinician training, establish supportive health systems and promote innovative research designs. Conclusions: Developing clinician training, supportive health systems and innovative research strategies centering on integrating palliative care and psychiatry care processes may be integral to optimising depression care when providing care to people with very poor prognoses.
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.
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.
A primary brain cancer diagnosis is a distressing, life changing event. It adversely affects the quality of life for the person living with brain cancer and their families ('carers'). Timely access ...to evidence-based information is critical to enabling people living with brain cancer, and their carers, to self-manage the devastating impacts of this disease.
A systematic environmental scan of web-based resources. A depersonalised search for online English-language resources published from 2009 to December 2019 and designed for adults (> 25 years of age), living with primary brain cancer, was undertaken using the Google search engine. The online information was classified according to: 1) the step on the cancer care continuum; 2) self-management domains (PRISMS taxonomy); 3) basic information disclosure (Silberg criteria); 4) independent quality verification (HonCode); 5) reliability of disease and treatment information (DISCERN Sections 1 and 2); and readability (Flesch-Kincaid reading grade).
A total of 119 online resources were identified, most originating in England (n = 49); Australia (n = 27); or the USA (n = 27). The majority of resources related to active treatment (n = 76), without addressing recurrence (n = 3), survivorship (n = 1) or palliative care needs (n = 13). Few online resources directly provided self-management advice for adults living with brain cancer or their carers. Just over a fifth (n = 26, 22%) were underpinned by verifiable evidence. Only one quarter of organisations producing resources were HonCode certified (n = 9, 24%). The median resource reliability as measured by Section 1, DISCERN tool, was 56%. A median of 8.8 years of education was required to understand these online resources.
More targeted online information is needed to provide people affected by brain cancer with practical self-management advice. Resources need to better address patient and carer needs related to: rehabilitation, managing behavioural changes, survivorship and living with uncertainty; recurrence; and transition to palliative care. Developing online resources that don't require a high level of literacy and/or cognition are also required.
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.
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.
Red Blood Cell (RBC) transfusions are commonly used in palliative care. RBCs are a finite resource, transfusions carry risks, and the net effect (benefits and harms) is poorly defined for people with ...life-limiting illnesses.
To examine the indications and effects of RBC transfusion in palliative care patients.
This international, multisite, prospective consecutive cohort study.
Palliative care patients undergoing RBC transfusion.
Target symptoms (fatigue, breathlessness, generalized weakness, or dizziness) were assessed before transfusion and at day 7 by treating clinicians, using National Cancer Center Institute Common Terminology Criteria for Adverse Events. Assessment of harms was made at day 2.
One hundred and one transfusions with day 7 follow-up were collected. Median age was 72.0 (interquartile range 61.5-83.0) years, 58% men, and mean Australia-modified Karnofsky Performance Status (AKPS) of 48 (standard deviation SD 17). A mean 2.1 (SD 0.6) unit was tranfused. The target symptoms were fatigue (61%), breathlessness (16%), generalized weakness (12%), dizziness (6%), or other (5%). Forty-nine percent of transfusions improved the primary target symptom, and 78% of transfusions improved at least one of the target symptoms. Harms were infrequent and mild. An AKPS of 40%-50% was associated with higher chances of symptomatic benefit in the target symptom; however, no other predictors of response were identified.
In the largest prospective consecutive case series to date, clinicians generally reported benefit, with minimal harms. Ongoing work is required to define the optimal patient- and clinician-reported hematological and functional outcome measures to optimize the use of donor blood and to minimize transfusion-associated risk.
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