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.

Participating doctors' perspectives on the regulation of voluntary assisted dying in Victoria: a qualitative study.

OBJECTIVES: To investigate the perspectives of doctors involved with voluntary assisted dying in Victoria regarding the Voluntary Assisted Dying Act 2017 (Vic) and its operation. DESIGN, SETTING, PARTICIPANTS: Qualitative study; semi-structured interviews with 32 doctors who had participated in the voluntary assisted dying system during its first year of operation (commenced 19 June 2019). Doctors were interviewed during April-July 2020. RESULTS: Three major themes related to problems during the first year of operation of the Act were identified: the statutory prohibition of health professionals initiating discussions with their patients about voluntary assisted dying; the Department of Health and Human Services guidance requirement that all doctor-patient, doctor-pharmacist, and pharmacist-patient interactions be face-to-face; and aspects of implementation, including problems with the voluntary assisted dying online portal, obtaining documentary evidence to establish eligibility, and inadequate resourcing of the Statewide Pharmacy Service. CONCLUSIONS: Doctors reported only limited concerns about the Victorian voluntary assisted dying legislation, but have had some problems with its operation, including implications for the accessibility of voluntary assisted dying to eligible patients. While legislative change may resolve some of these concerns, most can be ameliorated by improving the processes and systems.

Responses to a cancer diagnosis: a qualitative patient-centred interview study.

PURPOSE: A cancer diagnosis is an emotive and challenging time for patients. This study aimed to systematically explore patients' accounts of experiencing their cancer diagnosis. The purpose of this article is to offer a typology of patient responses to receiving a cancer diagnosis as a means through which to affirm the range of patients' experiences and to guide clinicians' practice. METHODS: Qualitative semi-structured interviews were conducted between 2015 and 2017 with 80 patients living with cancer: 34 females and 46 males, aged between 31 and 85, diagnosed with a range of cancer types, stages and treatment trajectories, from two metropolitan hospitals on the east coast of Australia. Interview data were analysed thematically, using the framework approach. RESULTS: A typology of responses to the cancer diagnosis was derived from the analysis and included (1) the incongruent diagnosis, unexpected because it did not 'fit' with the patient's 'healthy' identity; (2) the incidental diagnosis, arising from seemingly unrelated or minor medical investigations; (3) the validating diagnosis, as explanation and confirmation of previously unexplained symptoms, pain or feelings; (4) the life context diagnosis, where the cancer diagnosis was positioned relative to other challenging life events, or as relatively inconsequential compared with the hardship of others. CONCLUSIONS: A diagnosis of cancer is not always (or only) experienced by patients with shock and despair. Diagnosis is perceived and experienced in diverse ways, shaped by broader social or life contexts, and with important implications for the clinical encounter and communication from an oncology perspective.

Development of an International Competency Framework for Nurses in the Provision of Self-management Support to Cancer Populations.

BACKGROUND: Cancer survivors are required to manage their health, healthcare, and a myriad of symptoms through self-management. OBJECTIVE: The aim of this study was to develop a comprehensive framework of competencies and performance criteria that identifies the requisite knowledge and skills for nursing practice in the provision of self-management support for cancer survivors and their families. METHODS: The competency framework was developed using the following 3-stage consensus building approach: (1) development of a preliminary list of self-management support competencies and performance criteria informed by relevant literature, (2) a 2-round modified Delphi conducted with a panel of cancer nurse experts, and (3) a research team consensus meeting to finalize framework components. RESULTS: Seventy-one items, comprising 13 core competencies and 58 performance criteria, across 6 domains were generated. In round 1 of the modified Delphi, a panel of 21 oncology nurses produced consensus on retaining 28 items for inclusion in the final framework. Thirty-one items (including new items generated in round 1) were sent to round 2 for further rating. A panel of 19 nurses produced consensus on retaining a further 20 items in the framework in round 2. Of the 11 items that did not reach consensus, the research team proposed to include 7 in the final framework. Fifty-nine items were included in the final framework. CONCLUSIONS: This study provides a comprehensive, self-management support competency framework for oncology nurses. IMPLICATIONS FOR PRACTICE: This framework is the first step toward the development of training program curricula that prepares nurses in self-management for cancer and associated coaching knowledge and skills.

Cancer-related symptom clusters for symptom management in outpatients after commencing adjuvant chemotherapy, at 6 months, and 12 months.

GOALS OF WORK: The aim of this secondary data analysis was to investigate symptom clusters over time for symptom management of a patient group after commencing adjuvant chemotherapy. MATERIALS AND METHODS: A prospective longitudinal study of 219 cancer outpatients conducted within 1 month of commencing chemotherapy (T1), 6 months (T2), and 12 months (T3) later. Patients' distress levels were assessed for 42 physical symptoms on a clinician-modified Rotterdam Symptom Checklist. Symptom clusters were identified in exploratory factor analyses at each time. Symptom inclusion in clusters was determined from structure coefficients. Symptoms could be associated with multiple clusters. Stability over time was determined from symptom cluster composition and the proportion of symptoms in the initial symptom clusters replicated at later times. MAIN RESULTS: Fatigue and daytime sleepiness were the most prevalent distressing symptoms over time. The median number of concurrent distressing symptoms approximated 7, over time. Five consistent clusters were identified at T1, T2, and T3. An additional two clusters were identified at 12 months, possibly due to less variation in distress levels. Weakness and fatigue were each associated with two, four, and five symptom clusters at T1, T2, and T3, respectively, potentially suggesting different causal mechanisms. CONCLUSION: Stability is a necessary attribute of symptom clusters, but definitional clarification is required. We propose that a core set of concurrent symptoms identifies each symptom cluster, signifying a common cause. Additional related symptoms may be included over time. Further longitudinal investigation is required to identify symptom clusters and the underlying causes.

Non-Pharmacological Self-Management Strategies for Chemotherapy-Induced Peripheral Neuropathy in People with Advanced Cancer: A Systematic Review and Meta-Analysis.

Non-pharmacological self-management interventions for chemotherapy-induced peripheral neurotherapy (CIPN) are of clinical interest; however, no systematic review has synthesized the evidence for their use in people with advanced cancer. Five databases were searched from inception to February 2022 for randomized controlled trials assessing the effect of non-pharmacological self-management interventions in people with advanced cancer on the incidence and severity of CIPN symptoms and related outcomes compared to any control condition. Data were pooled with meta-analysis. Quality of evidence was appraised using the Revised Cochrane Risk of Bias Tool for Randomized Trials (RoB2), with data synthesized narratively. Grading of Recommendations, Assessment, Development and Evaluations (GRADE) was applied to assess the certainty of the evidence. Thirteen studies were included, which had a high (69%) or unclear (31%) risk of bias. Greatest confidence was found for physical exercise decreasing CIPN severity (SMD: -0.89, 95% CI: -1.37 to -0.41; p = 0.0003; I2 = 0%; n = 2 studies, n = 76 participants; GRADE level: moderate) and increasing physical function (SMD: 0.51, 95% CI: 0.02 to 1.00; p = 0.04; I2 = 42%; n = 3 studies, n = 120; GRADE level: moderate). One study per intervention provided preliminary evidence for the positive effects of glutamine supplementation, an Omega-3 PUFA-enriched drink, and education for symptom self-management via a mobile phone game on CIPN symptoms and related outcomes (GRADE: very low). No serious adverse events were reported. The strongest evidence with the most certainty was found for physical exercise as a safe and viable adjuvant to chemotherapy treatment for the prevention and management of CIPN and related physical function in people with advanced cancer. However, the confidence in the evidence to inform conclusions was mostly very low to moderate. Future well-powered and appropriately designed interventions for clinical trials using validated outcome measures and clearly defined populations and strategies are warranted.

Outcomes of cancer survivorship education and training for primary care providers: a systematic review.

PURPOSE: To identify published literature regarding cancer survivorship education programs for primary care providers (PCPs) and assess their outcomes. METHODS: PubMed, Embase, and CINAHL databases were searched between January 2005 and September 2020. The Quality of Cancer Survivorship Care Framework and Kirkpatrick's 4-level evaluation model were used to summarize program content and outcomes, respectively. Data extraction and critical appraisal were conducted by two authors. RESULTS: Twenty-one studies were included, describing self-directed online courses (n=4), presentations (n=2), workshops and training sessions (n=6), placement programs (n=3), a live webinar, a fellowship program, a referral program, a survivorship conference, a dual in-person workshop and webinar, and an in-person seminar and online webinar series. Eight studies described the use of a learner framework or theory to guide program development. All 21 programs were generally beneficial to PCP learners (e.g., increased confidence, knowledge, behavior change); however, methodological bias suggests caution in accepting claims. Three studies reported positive outcomes at the patient level (i.e., satisfaction with care) and organizational level (i.e., increased screening referrals, changes to institution practice standards). CONCLUSIONS: A range of cancer survivorship PCP education programs exist. Evidence for clinical effectiveness was rarely reported. Future educational programs should be tailored to PCPs, utilize an evidence-based survivorship framework, and evaluate patient- and system-level outcomes. IMPLICATIONS FOR CANCER SURVIVORS: PCPs have an important role in addressing the diverse health care needs of cancer survivors. Improving the content, approach, and evaluation of PCP-focused cancer survivorship education programs could have a positive impact on health outcomes among cancer survivors.

Multivariate methods to identify cancer-related symptom clusters.

Multivariate methods are required to assess the interrelationships among multiple, concurrent symptoms. We examined the conceptual and contextual appropriateness of commonly used multivariate methods for cancer symptom cluster identification. From 178 publications identified in an online database search of Medline, CINAHL, and PsycINFO, limited to articles published in English, 10 years prior to March 2007, 13 cross-sectional studies met the inclusion criteria. Conceptually, common factor analysis (FA) and hierarchical cluster analysis (HCA) are appropriate for symptom cluster identification, not principal component analysis. As a basis for new directions in symptom management, FA methods are more appropriate than HCA. Principal axis factoring or maximum likelihood factoring, the scree plot, oblique rotation, and clinical interpretation are recommended approaches to symptom cluster identification.

Systematic review of general practice end-of-life symptom control.

BACKGROUND: End of life care (EoLC) is a fundamental role of general practice, which will become more important as the population ages. It is essential that general practice's role and performance of at the end of life is understood in order to maximise the skills of the entire workforce. OBJECTIVE: To provide a comprehensive description of the role and performance of general practitioners (GPs) and general practice nurses (GPNs) in EoLC symptom control. METHOD: Systematic literature review of papers from 2000 to 2017 were sought from Medline, PsycINFO, Embase, Joanna Briggs Institute and Cochrane databases. RESULTS: From 6209 journal articles, 46 papers reported GP performance in symptom management. There was no reference to the performance of GPNs in any paper identified. Most GPs expressed confidence in identifying EoLC symptoms. However, they reported lack of confidence in providing EoLC at the beginning of their careers, and improvements with time in practice. They perceived emotional support as being the most important aspect of EoLC that they provide, but there were barriers to its provision. GPs felt most comfortable treating pain, and least confident with dyspnoea and depression. Observed pain management was sometimes not optimal. More formal training, particularly in the use of opioids was considered important to improve management of both pain and dyspnoea. CONCLUSIONS: It is essential that GPs receive regular education and training, and exposure to EoLC from an early stage in their careers to ensure skill and confidence. Research into the role of GPNs in symptom control needs to occur.

Supportive and palliative care needs identified by multiple sclerosis patients and their families.

AIM: To identify the supportive needs of individuals with multiple sclerosis (MS) and their families. DESIGN, SAMPLE AND METHOD: In-depth interviews were carried out with people living with MS in the community, their family members and health professionals. The data were transcribed verbatim and recurring themes identified. FINDINGS: The analysis of interviews revealed four themes: disbelief and devastation; losses and forced life choices; tracking down services and information; and sadness and relief. CONCLUSION: Given the duration, range of symptoms and distress often associated with MS, the findings of this research raise the important question of the role of palliative services in supporting the person with MS and his/her family.

Developing guidelines for syringe driver management.

The aim of this project was to develop clinical practice guidelines for the use and administration of pharmacological agents for symptom control via syringe drivers within Australia. By developing evidence-based clinical practice guidelines for the use of this common device, this project aimed to improve patient outcomes, reduce practice variation, minimize errors and encourage more efficient use of resources. A literature review identified current literature regarding syringe driver management and an expert panel was assembled to assist in the development of the guidelines. The development of these practice guidelines provides an example of how palliative care practitioners can use a framework of contemporary evidence to enhance clinical practice.

On resilience and acceptance in the transition to palliative care at the end of life.

Specialist palliative care is a prominent and expanding site of health service delivery, providing highly specialised care to people at the end of life. Its focus on the delivery of specialised life-enhancing care stands in contrast to biomedicine's general tendency towards life-prolonging intervention. This philosophical departure from curative or life-prolonging care means that transitioning patients can be problematic, with recent work suggesting a wide range of potential emotional, communication and relational difficulties for patients, families and health professionals. Yet, we know little about terminally ill patients' lived experiences of this complex transition. Here, through interviews with 40 inpatients in the last few weeks of life, we explore their embodied and relational experiences of the transition to inpatient care, including their accounts of an ethic of resilience in pre-palliative care and an ethic of acceptance as they move towards specialist palliative care. Exploring the relationship between resilience and acceptance reveals the opportunities, as well as the limitations, embedded in the normative constructs that inflect individual experience of this transition. This highlights a contradictory dynamic whereby participants' experiences were characterised by talk of initiating change, while also acquiescing to the terminal progression of their illness.

Barriers to effective cancer pain management: a survey of hospitalized cancer patients in Australia.

The purpose of this study was to examine attitudinal barriers to effective pain management in a consecutively recruited cohort of 114 cancer patients from four Australian hospitals. When surveyed, 48% of this sample reported experiencing pain within the previous 24 hours. Of these, 56% reported this pain to be "distressing, horrible or excruciating," with large proportions indicating that this pain had affected their movement, sleep and emotional well-being. Three factors were identified as potentially impacting on patients' responses to pain-poor levels of patient knowledge about pain, low perceived control over pain, and a deficit in communication about pain. A trend for older patients to experience more severe pain was also identified. These older patients reported being more willing to tolerate pain and perceive less control over their pain. Suggestions are made for developing patient education programs and further research using concepts drawn from broader social and behavioral models.

Identification of cancer-related symptom clusters: an empirical comparison of exploratory factor analysis methods.

CONTEXT: Symptom clusters, important for symptom management strategies, have been determined empirically by various analytical methods. Guidance to select methods from the options available in standard statistical packages is limited. OBJECTIVES: To compare alternative common factor analysis (FA) extraction methods appropriate to the data, to assess whether or not they determine similar symptom clusters, and to propose analytical approaches that are useful in this clinical context. METHODS: Within one month of commencing chemotherapy, outpatients from oncology and hematology clinics (n = 202) reported their symptom experience on a modified Rotterdam Symptom Checklist. Symptom distress levels in the past week were rated on a scale of one (not at all) to four (very much). In a secondary data analysis of 42 symptoms, the associations between symptoms and factors were determined using alternative common FA methods: principal axis factoring, unweighted least squares, image factor analysis, and alpha factor analysis (AFA). Symptom inclusion in a cluster was based on the interpretation of pattern and structure coefficients, and importantly, clinical relevance of the grouping. RESULTS: Five symptom clusters were commonly identified across methods: musculoskeletal discomforts/lethargy, oral discomforts, upper gastrointestinal discomforts, vasomotor symptoms, and gastrointestinal toxicities. In AFA, three additional clusters were lethargy, somatic symptoms, and treatment-related symptom clusters. CONCLUSION: The most parsimonious solution resulted from principal axis factoring, but for large numbers of symptoms, AFA may be superior by identifying symptom clusters more useful for symptom management. Interpreting complex symptom relationships may lead to the investigation of pathophysiological mechanisms and intervention opportunities. Future studies should include psychological and cognitive symptoms.

Is symptom burden a predictor of anxiety and depression in patients with cancer about to commence chemotherapy?

OBJECTIVES: To assess the prevalence, severity and distress from physical symptoms and the prevalence of anxiety and depression in patients about to undergo chemotherapy for potentially curable cancers; and to explore the presence of symptom clusters and investigate their relationships with anxiety and depression. DESIGN, PARTICIPANTS AND SETTING: Cross-sectional survey of 192 patients with breast or gastrointestinal cancers or lymphoma before first ever chemotherapy treatment with curative intent. MAIN OUTCOME MEASURES: Hospital Anxiety and Depression Scale to assess anxiety and depression and the Chemotherapy Symptom Assessment Scale to measure physical symptom prevalence, severity and distress ("bother"). RESULTS: Prevalence of anxiety was 45% and depression 25%. The most prevalent physical symptoms were pain (48%), feeling unusually tired (45%) and difficulty sleeping (45%). Physical symptoms rated as most severe were pain (28%), difficulty sleeping (26%) and feeling unusually tired (19%). Physical symptoms causing the most distress were pain (39%), constipation (18%) and nausea (16%). Factor analysis of symptom distress scores indicated that five factors explained 36.7% of the variance and included: gastrointestinal (nausea, vomiting, pain), general malaise (tiredness, feeling weak, headaches), emotional (feeling depressed, feeling anxious), nutritional (changes to appetite, weight loss or gain) and general physical (mouth/throat problems, shortness of breath). Regression analysis indicated that symptom distress for the malaise (beta = 1.46; P < 0.001), nutritional (beta = 0.70; P < 0.05) and gastrointestinal (beta = 0.73; P < 0.05) factors were independent predictors of depression. CONCLUSIONS: Before commencing chemotherapy, patients are already experiencing distressing symptoms and have high scores for anxiety and depression, partially explained by physical symptom distress. Patients should be routinely screened for both emotional and physical needs and appropriate interventions should be developed. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN012606000178549.

Schematic representation of case study research designs.

AIM: The paper is a report of a study to demonstrate how the use of schematics can provide procedural clarity and promote rigour in the conduct of case study research. BACKGROUND: Case study research is a methodologically flexible approach to research design that focuses on a particular case - whether an individual, a collective or a phenomenon of interest. It is known as the 'study of the particular' for its thorough investigation of particular, real-life situations and is gaining increased attention in nursing and social research. However, the methodological flexibility it offers can leave the novice researcher uncertain of suitable procedural steps required to ensure methodological rigour. METHOD: This article provides a real example of a case study research design that utilizes schematic representation drawn from a doctoral study of the integration of health promotion principles and practices into a palliative care organization. DISCUSSION: The issues discussed are: (1) the definition and application of case study research design; (2) the application of schematics in research; (3) the procedural steps and their contribution to the maintenance of rigour; and (4) the benefits and risks of schematics in case study research. CONCLUSION: The inclusion of visual representations of design with accompanying explanatory text is recommended in reporting case study research methods.

Education and training in palliative care.

The growing demand for palliative care means that health professionals are expected to provide palliative care as a core part of their practice. Training in the practice of palliative care is a recent addition to undergraduate and postgraduate medical and other healthcare curricula, and several initiatives are under way to promote palliative care principles and practice in healthcare training. The challenge that we all face is how to develop these skills in the face of multiple demands on our time. Strategies for improving palliative care education include a national undergraduate curriculum for palliative care, expanded training opportunities for generalist practitioners, and further recognition for the role of practitioners of specialist palliative care and associated curriculum development.