The COVID-19 Pandemic: Bereavement Experiences Between Hospital and Home Deaths in Palliative Care.

BACKGROUND: Australian COVID-19 public health measures reduced opportunities for people to communicate with healthcare professionals and be present at the death of family members/friends. AIM: To understand if pandemic-specific challenges and public health measures during the COVID-19 pandemic impacted end-of-life and bereavement experiences differently if the death, supported by palliative care, occurred in a hospital or at home. DESIGN: A cross-sectional online survey was completed by bereaved adults during 2020-2022. Analyses compared home and in-patient palliative care deaths and bereavement outcomes. Additional analyses compared health communication outcomes for those identified as persons responsible or next of kin. SETTING/PARTICIPANTS: Of 744 bereaved people; 69% (n = 514) had a death in hospital and 31% (n = 220) at home. RESULTS: The COVID-19 public health measures influenced people's decision to die at home. Compared to hospital deaths, the home death group had higher levels of grief severity and grief-related functional impairment. Only 37% of bereaved people received information about bereavement and support services. 38% of participants who were at least 12 months postdeath scored at a level suggestive of possible prolonged grief disorder. Levels of depression and anxiety between the two groups were not significantly different. CONCLUSIONS: These findings highlight the need for health services to recognize bereavement as fundamental to palliative and health care and provide pre- and post death grief and bereavement care to ensure supports are available particularly for those managing end-of-life at home, and that such supports are in place prior to as well as at the time of the death.

Gabapentin for Pain in Pediatric Palliative Care.

OBJECTIVE: Gabapentin is commonly used to treat pain in children receiving pediatric palliative care. This study describes the real-world use of gabapentin and the associated benefits and adverse effects/events (AEs). METHODS: A prospective, multicenter cohort of standardized data collection after a clinical decision was made to use gabapentin for managing neuropathic or nociplastic pain in children attended on by a pediatric palliative care service. It was conducted across 11 sites in seven countries including hospital, inpatient, and outpatient services. Clinical outcomes were graded using pain scales validated for age and cognitive ability and the National Cancer Institute Common Terminology Criteria for Adverse Events (NCICTCAE) at baseline, 14 days, 28 days, six weeks and 12 weeks after initiation of gabapentin. Ad-hoc safety reporting continued throughout the study. RESULTS: Data were collected from 127 children with a median age of 4.7 years (IQR 0.1-17.9); 61% had a neurological disorder, 21% advanced cancer and the cohort had a high level of disability (Lansky/Karnofsky performance score 37.1). Gabapentin was prescribed at standard pediatric doses. On average, 76% of children had a reduction in pain and 42% experienced a potential AE. The mean pain score decreased from 6.0 (SD 2.6) at baseline to 3.3 (SD 2.4) at 14 days and 1.8 (SD 1.8) after 12-weeks of gabapentin therapy. Ten percent had increased pain at each time point. AEs did not increase when individual changes over time were accounted for except for somnolence (7%). Serious AEs attributable to gabapentin were possible or probable in 3% of children. CONCLUSIONS: Gabapentin prescribed at standard doses for advanced cancer and severe neurological injury in children under a pediatric palliative care service was associated with generally improved pain intensity at previously described levels of adverse effects.

Phase II, double blind, placebo controlled, multi-site study to evaluate the safety, feasibility and desirability of conducting a phase III study of anamorelin for anorexia in people with small cell lung cancer: A study protocol (LUANA trial).

Anorexia is experienced by most people with lung cancer during the course of their disease and treatment. Anorexia reduces response to chemotherapy and the ability of patients to cope with, and complete their treatment leading to greater morbidity, poorer prognosis and outcomes. Despite the significant importance of cancer-related anorexia, current therapies are limited, have marginal benefits and unwarranted side effects. In this multi-site, randomised, double blind, placebo controlled, phase II trial, participants will be randomly assigned (1:1) to receive once-daily oral dosing of 100mg of anamorelin HCl or matched placebo for 12 weeks. Participants can then opt into an extension phase to receive blinded intervention for another 12 weeks (weeks 13-24) at the same dose and frequency. Adults (≥18 years) with small cell lung cancer (SCLC); newly diagnosed with planned systemic therapy OR with first recurrence of disease following a documented disease-free interval ≥6 months, AND with anorexia (i.e., ≤ 37 points on the 12-item Functional Assessment of Anorexia Cachexia Treatment (FAACT A/CS) scale) will be invited to participate. Primary outcomes are safety, desirability and feasibility outcomes related to participant recruitment, adherence to interventions, and completion of study tools to inform the design of a robust Phase III effectiveness trial. Secondary outcomes are the effects of study interventions on body weight and composition, functional status, nutritional intake, biochemistry, fatigue, harms, survival and quality of life. Primary and secondary efficacy analysis will be conducted at 12 weeks. Additional exploratory efficacy and safety analyses will also be conducted at 24 weeks to collect data over longer treatment duration. The feasibility of economic evaluations in Phase III trial will be assessed, including the indicative costs and benefits of anamorelin for SCLC to the healthcare system and society, the choice of methods for data collection and the future evaluation design. Trial registration. The trial has been registered with the Australian New Zealand Clinical Trials Registry [ACTRN12622000129785] and approved by the South Western Sydney Local Health District Human Research Ethics Committee [2021/ETH11339]. https://clin.larvol.com/trial-detail/ACTRN12622000129785.

Health care professionals' experiences of dealing with cancer cachexia.

BACKGROUND: Cancer cachexia (CC) is a debilitating syndrome severely impacting patients' quality of life and survivorship. We aimed to investigate the health care professionals' (HCPs') experiences of dealing with CC. METHODS: Survey questions entailed definitions and guidelines, importance of CC management, clinician confidence and involvement, screening and assessment, interventions, psychosocial and food aspects. The online survey was disseminated through Australian and New Zealand palliative care, oncology, allied health and nursing organisations. Frequencies were reported using descriptive statistics accounting for response rates. Associations were examined between variables using Fisher's exact and Pearson's chi-square tests. RESULTS: Over 90% of the respondents (n = 192) were medical doctors or nurses. Over 85% of the respondents were not aware of any guidelines, with 83% considering ≥ 10% weight loss from baseline indicative of CC. CC management was considered important by 77% of HCPs, and 55% indicated that it was part of their clinical role to assess and treat CC. In contrast, 56% of respondents were not confident about managing CC, and 93% believed formal training in CC would benefit their clinical practice. Although formal screening tools were generally not used (79%), 75% of respondents asked patients about specific symptoms. Antiemetics (80%) and nutritional counselling (86%) were most prescribed or recommended interventions, respectively. CONCLUSION: This study underlines the deficiencies in knowledge and training of CC which has implications for patients' function, well-being and survival. HCP training and a structured approach to CC management is advocated for optimal and continued patient care.

Cyclizine pharmacovigilance in hospice/palliative care: net effects for nausea or vomiting.

OBJECTIVES: To describe the contemporary real-world use of cyclizine for nausea or vomiting, and the associated benefits and harms. METHODS: This was a prospective, consecutive case series of routine clinical use of cyclizine for nausea or vomiting in palliative care conducted across 19 sites in Australia, Aotearoa/New Zealand and the UK. Clinical outcomes were graded using the National Cancer Institute Common Terminology Criteria for Adverse Events at baseline and 72 hours after initiation of cyclizine. Ad hoc safety reporting continued for 2 weeks. RESULTS: Data were collected from 101 patients between May 2018 and December 2020. Cyclizine was mostly used in combination with another antiemetic. Overall, 79 patients benefited and 32 experienced harm (56 had benefit without harm; 9 had harm without benefit). The most common harms were constipation (13%), somnolence (9%) and confusion (7%), adding to the already high rates of these symptoms at baseline. For the four patients with serious harms (grade ≥3), these were exacerbations of existing symptoms. Nine patients stopped cyclizine at 72 hours and a further 20 patients within 2 weeks. The most common reasons for stopping were lack of benefit and symptom resolution; none stopped because of harms. CONCLUSIONS: When used as described in a palliative care setting, cyclizine benefits about three-quarters of patients, with about one-third experiencing tolerable harms.

Paracentesis for cancer-related ascites in palliative care: An international, prospective cohort study.

BACKGROUND: Paracentesis is commonly undertaken in patients with cancer-related ascites. AIM: To systematically investigate the symptomatic benefits and harms experienced by patients with cancer undergoing paracentesis using real-world data in the palliative care setting. DESIGN: Prospective, multisite, observational, consecutive cohort study. Benefits and harms of paracentesis were assessed between 01/07/2018 and 31/02/2021 as part of routine clinical assessments by treating clinicians at four timepoints: (T0) before paracentesis; (T1) once drainage ceased; (T2) 24 h after T1 and (T3) 28 days after T1 or next paracentesis, if sooner. SETTING/PARTICIPANTS: Data were collected from 11 participating sites across five countries (Australia, England, Hong Kong, Malaysia and New Zealand) on 111 patients undergoing paracentesis via a temporary (73%) or indwelling (21%) catheter: 51% male, median age 69 years, Australia-modified Karnofsky Performance Score 50. RESULTS: At T1 (n = 100), symptoms had improved for most patients (81%), specifically abdominal distension (61%), abdominal pain (49%) and nausea (27%), with two-thirds experiencing improvement in ⩾2 symptoms. In the remaining patients, symptoms were unchanged (7%) or worse (12%). At least one harm occurred in 32% of patients, the most common being an ascitic leak (n = 14). By T3, 89% of patients had experienced some benefit and 36% some harm, including four patients who experienced serious harm, one of which was a fatal bowel perforation. CONCLUSION: Most patients obtained rapid benefits from paracentesis. Harms were less frequent and generally mild, but occasionally serious and fatal. Our findings help inform clinician-patient discussions about the potential outcomes of paracentesis in this frail population.

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.

Cancer care clinicians' provision of smoking cessation support: A mixed methods study in New South Wales, Australia.

OBJECTIVES: Given the importance of supporting cancer patients to quit smoking, we sought to ascertain cancer care clinicians' beliefs and practices regarding providing smoking cessation brief interventions. METHODS: We used a cross-sectional sequential explanatory mixed method design, including a survey of multidisciplinary cancer care clinicians and semistructured interviews. RESULTS: One hundred and sixty-five cancer care clinicians completed the survey and 21 participated in interviews. Over half of survey respondents (53%) said they do not regularly undertake smoking cessation brief interventions and 40% rarely or never advise quitting. Nonmetropolitan clinicians were more likely to discuss medication options and refer to the Quitline. Physicians were more likely to do brief interventions with patients and radiation therapists were least likely. Barriers were lack of training and experience, lack of knowledge of the Quitline referral process, lack of role clarity, lack of resources and systems, and perceived psychological ramifications of cancer for patients. CONCLUSION: There is a need to upskill cancer clinicians and improve systems to provide smoking cessation brief interventions as part of routine clinical practice. All cancer care clinicians should complete brief intervention smoking cessation training relevant to the cancer context, including making referrals to Quitline, and be supported by systems to record and follow-up care.

Pharmacovigilance in hospice/palliative care: Net effect of amitriptyline or nortriptyline on neuropathic pain: UTS/IMPACCT Rapid programme international consecutive cohort.

BACKGROUND: Real-world effectiveness of interventions in palliative care need to be systematically quantified to inform patient/clinical decisions. Neuropathic pain is prevalent and difficult to palliate. Tricyclic antidepressants have an established role for some neuropathic pain aetiologies, but this is less clear in palliative care. AIM: To describe the real-world use and outcomes from amitriptyline or nortriptyline for neuropathic pain in palliative care. DESIGN: An international, prospective, consecutive cohort post-marketing/phase IV/pharmacovigilance/quality improvement study of palliative care patients with neuropathic pain where the treating clinician had already made the decision to use a tricyclic antidepressant. Data were entered at set times: baseline, and days 7 and 14. Likert scales graded benefits and harms. SETTING/PARTICIPANTS: Twenty-one sites (inpatient, outpatient, community) participated in six countries between June 2016 and March 2019. Patients had clinician-diagnosed neuropathic pain. RESULTS: One hundred and fifty patients were prescribed amitriptyline (110) or nortriptyline (40) of whom: 85% had cancer; mean age 73.2 years (SD 12.3); mean 0-4 scores for neuropathic pain at baseline were 1.8 (SD 1.0). By day 14, doses of amitriptyline were 57 mg (SD 21) and nortriptyline (48 mg (SD 21). Fifty-two (34.7%) patients had pain improvement by day 14 (amitriptyline (45/110 (43.3%); nortriptyline (7/40 (18.9%)). Thirty-nine (27.7%) had new harms; (amitriptyline 29/104 (27.9%); nortriptyline 10/37 (27.0%); dizziness (n = 23), dry mouth (n = 20), constipation (n = 14), urinary retention (n = 10)). Benefits without harms occurred (amitriptyline (26/104 (25.0%); nortriptyline (4/37 (10.8%)). CONCLUSIONS: Benefits favoured amitriptyline while harms were similar for both medications.

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.

Study protocol for SKIPMDD: subcutaneous ketamine infusion in palliative care patients with advanced life limiting illnesses for major depressive disorder (phase II pilot feasibility study).

INTRODUCTION: Major depressive disorder (MDD) in people with advanced life-limiting illnesses can have significant impact on the quality-of-life of those affected. The management of MDD in the palliative care setting can be challenging as typical antidepressants may not work in time nor be tolerated due to coexisting organ dysfunctions, symptom burden and frailty. Parenteral ketamine was found to exhibit effective and rapid-onset antidepressant effect even against treatment-resistant depression in the psychiatric population. However, there is currently neither feasibility study nor available prospective study available to inform of the safety, tolerability and efficacy of such for MDD in the palliative setting. METHODS AND ANALYSIS: This is an open-labelled, single arm, phase II pilot feasibility study involving adult patients with advanced life-limiting illnesses and MDD across four palliative care services in Australia. It has an individual dose-titration design (0.1-0.4 mg/kg) with weekly treatments of subcutaneous ketamine infusion over 2 hours. The primary outcome is feasibility. The secondary outcomes are related to the safety, tolerability and antidepressant efficacy of ketamine, participants' satisfaction in relation to the trial process and the reasons for not completing the study at various stages. The feasibility data will be reported using descriptive statistics. Meanwhile, side effects, tolerability and efficacy data will be analysed using change of assessment scores from baseline. ETHICS AND DISSEMINATION: Ethics approval was acquired (South Western Sydney Local Health District: HREC/18/LPOOL/466). The results of this study will be submitted for publication in peer-reviewed journals and presented at relevant conferences. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trial Registry Number: ACTRN12618001586202; Pre-results.

Prevalence and incidence of cancer related lymphedema in low and middle-income countries: a systematic review and meta-analysis.

BACKGROUND: Little is known about the prevalence and incidence in low and middle-income countries (LMICs) of secondary lymphedema due to cancer. The purpose of the study is to estimate the prevalence and incidence in LMICs of secondary lymphedema related to cancer and/or its treatment(s) and identify risk factors. METHOD: A systematic review and meta-analysis was conducted. Medline, EMBASE and CINAHL were searched in June 2019 for peer-reviewed articles that assessed prevalence and/or incidence of cancer-related lymphedema in LMICs. Risk of bias was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Prevalence Studies. Estimates of pooled prevalence and incidence estimates were calculated with 95% confidence intervals (CI), with sub-group analyses grouping studies according to: country of origin, study design, risk of bias, setting, treatment, and lymphedema site and measurement. Heterogeneity was measured using X2 and I2, with interpretation guided by the Cochrane Handbook for Systematic Reviews. RESULTS: Of 8766 articles, 36 were included. Most reported on arm lymphedema secondary to breast cancer treatment (n = 31), with the remainder reporting on leg lymphedema following gynecological cancer treatment (n = 5). Arm lymphedema was mostly measured by arm circumference (n = 16/31 studies), and leg lymphedema through self-report (n = 3/5 studies). Eight studies used more than one lymphedema measurement. Only two studies that measured prevalence of leg lymphedema could be included in a meta-analysis (pooled prevalence =10.0, 95% CI 7.0-13.0, I2 = 0%). The pooled prevalence of arm lymphedema was 27%, with considerable heterogeneity (95% CI 20.0-34.0, I2 = 94.69%, n = 13 studies). The pooled incidence for arm lymphedema was 21%, also with considerable heterogeneity (95% CI 15.0-26.0, I2 = 95.29%, n = 11 studies). There was evidence that higher body mass index (> 25) was associated with increased risk of arm lymphedema (OR: 1.98, 95% CI 1.45-2.70, I2 = 84.0%, P < 0.0001, n = 4 studies). CONCLUSION: Better understanding the factors that contribute to variability in cancer-related arm lymphedema in LMICs is an important first step to developing targeted interventions to improve quality of life. Standardising measurement of lymphedema globally and better reporting would enable comparison within the context of information about cancer treatments and lymphedema care.

Financial stress experienced by informal carers of adults with a chronic disease: Results from an Australian population-based cross-sectional survey.

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.

An evaluation of involving family caregivers in the self-care of heart failure patients on hospital readmission: Randomised controlled trial (the FAMILY study).

BACKGROUND: The prevalence of heart failure is increasing in Lebanon but to date there is no systematic evaluation of a disease management intervention. OBJECTIVE: The aim of this study was to evaluate the effect of involving family caregivers in the self-care of patients with heart failure on the risk of hospital readmission. DESIGN: A multi-site, block randomised controlled trial. SETTINGS: The study was conducted over a 13-month period in three tertiary medical centres in Beirut and Mount Lebanon, Lebanon. PARTICIPANTS: Adult patients presenting for an exacerbation of heart failure to one of the study centres were included. Patients with limited life expectancy or physical functionality, planned cardiac bypass or valve replacement surgery, living alone or in nursing homes, or aged less than 18 years were excluded. METHODS: Patients allocated to the intervention group and their family caregivers were provided with a comprehensive, culturally appropriate, educational session on self-care maintenance and symptom management along with self-care resources. The usual care group received the self-care resources only. Follow-up phone calls were conducted 30days following discharge by a research assistant blinded to treatment assignment. The primary outcome was hospital readmission and the secondary outcomes were self-care, quality of life, major vascular events and healthcare utilization. RESULTS: The final sample included 256 patients hospitalized for heart failure randomised into control (130 patients) and intervention (126 patients) groups. The mean age was 67 (SD=8)years, and the majority (55%) were male. Readmission at 30days was significantly lower in the intervention group compared to the control group (n=10, 9% vs. n=20, 19% respectively, OR=0.40, 95% CI=0.02, 0.10, p=0.02). Self-care scores improved in both groups at 30days, with a significantly larger improvement in the intervention group than the control group in the maintenance and confidence sub-scales, but not in the self-care management sub-scale. No differences were seen in quality of life scores or emergency department presentations between the groups. More patients in the control group than in the intervention group visited health care facilities (n=24, 23% vs. n=12, 11% respectively, OR=0.39, 95% CI=0.18, 0.83, p=0.01). CONCLUSION: The trial results confirmed the potential of the family-centred self-care educational intervention under evaluation to reduce the risk of readmission in Lebanese patients suffering from exacerbated heart failure. Further research is needed to validate these findings with longer periods of follow-up and to identify the intervention components and intensity required to induce sustained benefits on patients' self-care management and quality of life.

Development and psychometric evaluation of the Thai Human Papillomavirus Beliefs Scale.

In this study, we developed and evaluated the psychometric properties of the Thai Human Papillomavirus Beliefs Scale. The Scale was tested on 386 young women aged 18-24 years in Chiang Mai, Thailand. Content validity of the Scale was evaluated by a panel of experts, construct validity was determined using exploratory factor analysis, and reliability was assessed for stability and internal consistency. Factor analysis provided empirical support for the existence of four factors, which accounted for 67.7% of the total variance: perceived susceptibility, perceived seriousness, perceived benefits, and perceived barriers. Cronbach's α reliability coefficients for the four subscales ranged from 0.59 to 0.86. Factors predicting intention to receive the papillomavirus vaccine were perceived susceptibility, perceived benefits, and perceived barriers. The Thai Human Papillomavirus Beliefs Scale demonstrated promising psychometric properties, indicating that it might be a useful instrument for assessing young women's human papillomavirus and cervical cancer-associated beliefs, and for predicting human papillomavirus vaccination intention.