Place of Death for Adults Receiving Specialist Palliative Care in Their Last 3 Months of Life: Factors Associated With Preferred Place, Actual Place, and Place of Death Congruence.

Objectives: Congruence between the preferred and actual place of death is recognised as an important quality indicator in end-of-life care. However, there may be complexities about preferences that are ignored in summary congruence measures. This article examined factors associated with preferred place of death, actual place of death, and congruence for a sample of patients who had received specialist palliative care in the last three months of life in Ireland. Methods: This article analysed merged data from two previously published mortality follow-back surveys: Economic Evaluation of Palliative Care in Ireland (EEPCI); Irish component of International Access, Rights and Empowerment (IARE I). Logistic regression models examined factors associated with (a) preferences for home death versus institutional setting, (b) home death versus hospital death, and (c) congruent versus non-congruent death. Setting: Four regions with differing levels of specialist palliative care development in Ireland. Participants: Mean age 77, 50% female/male, 19% living alone, 64% main diagnosis cancer. Data collected 2011-2015, regression model sample sizes: n = 342-351. Results: Congruence between preferred and actual place of death in the raw merged dataset was 51%. Patients living alone were significantly less likely to prefer home versus institution death (OR 0.389, 95%CI 0.157-0.961), less likely to die at home (OR 0.383, 95%CI 0.274-0.536), but had no significant association with congruence. Conclusions: The findings highlight the value in examining place of death preferences as well as congruence, because preferences may be influenced by what is feasible rather than what patients would like. The analyses also underline the importance of well-resourced community-based supports, including homecare, facilitating hospital discharge, and management of complex (eg, non-cancer) conditions, to facilitate patients to die in their preferred place.

Primary data on symptom burden and quality of life among elderly patients at risk of dying during unplanned admissions to an NHS hospital: a cohort study using EuroQoL and the integrated palliative care outcome scale.

BACKGROUND: Older people account heavily for palliative care needs at the population level and are growing in number as the population ages. There is relatively little high-quality data on symptom burden and quality of life, since these data are not routinely collected, and this group are under-recruited in primary research. It is unclear which measurement tools are best suited to capture burdens and experience. METHODS: We recruited a cohort of 221 patients aged 75 + years with poor prognosis who had an unplanned admission via the emergency department in a large urban hospital in England between 2019 and 2020. Risk of dying was assessed using the CriSTAL tool. We collected primary data and combined these with routine health records. Baseline clinical data and patient reported quality of life outcomes were collected on admission and reassessed within the first 72 h of presentation using two established tools: EQ-5D-5 L, EQ-VAS and the Integrated Palliative Outcomes Scale (IPOS). RESULTS: Completion rate was 68% (n = 151) and 33.1% were known to have died during admission or within 6 months post-discharge. The vast majority (84.8%) reported severe difficulties with at least one dimension of EQ-5D-5 L at baseline and improvements in EQ-VAS observed at reassessment in 51.7%. The baseline IPOS revealed 78.2% of patients rating seven or more items as moderate, severe or overwhelming, but a significant reduction (-3.6, p < 0.001) in overall physical symptom severity and prevalence was also apparent. No significant differences were noted in emotional symptoms or changes in communication/practical issues. IPOS total score at follow up was positively associated with age, having comorbidities (Charlson index score > = 1) and negatively associated with baseline IPOS and CriSTAL scores. CONCLUSION: Older people with poor prognosis admitted to hospital have very high symptom burden compared to population norms, though some improvement following assessment was observed on all measures. These data provide valuable descriptive information on quality of life among a priority population in practice and policy and can be used in future research to identify suitable interventions and model their effects.

Integrated Short-term Palliative Rehabilitation to improve quality of life and equitable care access in incurable cancer (INSPIRE): a multinational European research project.

Background: Disability related to incurable cancer affects over a million Europeans each year and people with cancer rank loss of function among the most common unmet supportive care needs. Objectives: To test the clinical and cost-effectiveness of an integrated short-term palliative rehabilitation intervention, to optimise function and quality of life in people affected by incurable cancer. Design: This is a multinational, parallel group, randomised, controlled, assessor blind, superiority trial. Methods: The INSPIRE consortium brings together leaders in palliative care, oncology and rehabilitation from partner organisations across Europe, with complementary expertise in health service research, trials of complex interventions, mixed-method evaluations, statistics and economics. Partnership with leading European civil society organisations ensures citizen engagement and dissemination at the highest level. We will conduct a multinational randomised controlled trial across five European countries, recruiting participants to assess the effectiveness of palliative rehabilitation for people with incurable cancer on the primary outcome - quality of life - and secondary outcomes including disability, symptom burden and goal attainment. To support trial conduct and enhance analysis of trial data, we will also conduct: comparative analysis of current integration of rehabilitation across oncology and palliative care services; mixed-method evaluations of equity and inclusivity, processes and implementation for the intervention, at patient, health service and health system levels. Finally, we will conduct an evidence synthesis, incorporating INSPIRE findings, and a Delphi consensus to develop an international framework for palliative rehabilitation practice and policy, incorporating indicators, core interventions, outcomes and integration methods. Scientific contribution: If positive, the trial could produce a scalable and equitable intervention to improve function and quality of life in people with incurable cancer and reduce the burden of care for their families. It could also upskill the practitioners involved and motivate future research questions. The intervention could be adapted and integrated into different health systems using existing staff and services, with little or no additional cost.

Patient-reported outcome measures for advanced cancer in China: A systematic review of cross-cultural adaptation and psychometric properties.

BACKGROUND: The number of patients with advanced cancer in China is rapidly increasing. As services and policy evolve, it is essential to improve the quality of care by measuring outcomes of importance to patients and families by identifying patient-reported outcome measures (PROMs) for use with advanced cancer patients in China, and critically appraising their cross-cultural adaptation process and measurement properties. METHODS: A systematic review was conducted in accordance with COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN), with quality assessment using the Guidelines for the Process of Cross-Cultural Adaptation of Self-Report Measures and COSMIN quality criteria for measurement properties. MEDLINE, EMBASE, PsycINFO, CINAHL, CNKI and WanFang were systematically searched from inception to May 2019, updated to August 2022. Supplemental searches were conducted in grey literature databases, Google scholar and hand-searching of reference lists. RESULTS: From 10793 articles, 437 were selected for full-text review based on titles and abstracts. A total of 46 studies reporting 39 PROMs were retained. No articles were rated as "good quality" in more than four of the six stages of cross-cultural adaptation. At least half of the required information on psychometric properties was missing for each measure. Based on COSMIN, none identified PROMs were valid across all properties nor appropriate to use. CONCLUSION: There is currently no contextually appropriate and psychometrically sound PROMs for advanced cancer patients in China. The psychometric literature suggest that adaptation of existing measures is the potential solution. POLICY SUMMARY: Developing outcome measures for advanced cancer patients in China is invaluable to improve audit, clinical services and assess the quality of care, for research purposes and secure funding. Future research in measures' development, refinement and cross-cultural adaptation in this field is urgently needed.

Overprescribing among older people near end of life in Ireland: Evidence of prevalence and determinants from The Irish Longitudinal Study on Ageing (TILDA).

International evidence shows that people approaching end of life (EOL) have high prevalence of polypharmacy, including overprescribing. Overprescribing may have adverse side effects for mental and physical health and represents wasteful spending. Little is known about prescribing near EOL in Ireland. We aimed to describe the prevalence of two undesirable outcomes, and to identify factors associated with these outcomes: potentially questionable prescribing, and potentially inadequate prescribing, in the last year of life (LYOL). We used The Irish Longitudinal Study on Ageing, a biennial nationally representative dataset on people aged 50+ in Ireland. We analysed a sub-sample of participants with high mortality risk and categorised their self-reported medication use as potentially questionable or potentially inadequate based on previous research. We identified mortality through the national death registry (died in <365 days versus not). We used descriptive statistics to quantify prevalence of our outcomes, and we used multivariable logistic regression to identify factors associated with these outcomes. Of 525 observations, 401 (76%) had potentially inadequate and 294 (56%) potentially questionable medications. Of the 401 participants with potentially inadequate medications, 42 were in their LYOL. OF the 294 participants with potentially questionable medications, 26 were in their LYOL. One factor was significantly associated with potentially inadequate medications in LYOL: male (odds ratio (OR) 4.40, p = .004) Three factors were associated with potentially questionable medications in LYOL: male (OR 3.37, p = .002); three or more activities of daily living (ADLs) (OR 3.97, p = .003); and outpatient hospital visits (OR 1.03, p = .02). Thousands of older people die annually in Ireland with potentially inappropriate or questionable prescribing patterns. Gender differences for these outcomes are very large. Further work is needed to identify and reduce overprescribing near EOL in Ireland, particularly among men.

Predicting mortality in The Irish Longitudinal Study on Ageing (TILDA): development of a four-year index and comparison with international measures.

OBJECTIVES: We aimed to replicate existing international (US and UK) mortality indices using Irish data. We developed and validated a four-year mortality index for adults aged 50 + in Ireland and compared performance with these international indices. We then extended this model by including additional predictors (self-report and healthcare utilization) and compared its performance to our replication model. METHODS: Eight thousand one hundred seventy-four participants in The Irish Longitudinal Study on Ageing were split for development (n = 4,121) and validation (n = 4,053). Six baseline predictor categories were examined (67 variables total): demographics; cardiovascular-related illness; non-cardiovascular illness; health and lifestyle variables; functional variables; self-report (wellbeing and social connectedness) and healthcare utilization. We identified variables independently associated with four-year mortality in the development cohort and attached these variables a weight according to strength of association. We summed the weights to calculate a single index score for each participant and evaluated predicted accuracy in the validation cohort. RESULTS: Our final 14-predictor (extended) model assigned risk points for: male (1pt); age (65-69: 2pts; 70-74: 4 pts; 75-79: 4pts; 80-84: 6pts; 85 + : 7pts); heart attack (1pt); cancer (3pts); smoked past age 30 (2pts); difficulty walking 100 m (2pts); difficulty using the toilet (3pts); difficulty lifting 10lbs (1pts); poor self-reported health (1pt); and hospital admission in previous year (1pt). Index discrimination was strong (ROC area = 0.78). DISCUSSION: Our index is predictive of four-year mortality in community-dwelling older Irish adults. Comparisons with the international indices show that our 12-predictor (replication) model performed well and suggests that generalisability is high. Our 14-predictor (extended) model showed modest improvements compared to the 12-predictor model.

Preferences of Older People With a Life-Limiting Illness: A Discrete Choice Experiment.

CONTEXT: There is limited evidence about which elements and characteristics of palliative care service provision improve the experiences of older people living with life-limiting illness. OBJECTIVES: To evaluate older patients' (≥65 years) preferences for elements of services and supports and to explore relationships between patient characteristics and the patterns of preferences. METHODS: A cross-sectional survey undertaken in Ireland and England using a Discrete Choice Experiment with people accessing specialist palliative care services. A random-effects probit model was used to estimate patient preferences. RESULTS: Of the 77 patients were interviewed, 51 participated in the Discrete Choice Experiment component of the interview (response rate = 66%). Participants prioritized support that minimized unpaid caregiver burden (P < 0.001). They also preferred ease of access to services including out-of-hours access (P < 0.001) and free care at home (P < 0.001). Quality of life was prioritized over quantity of life (<0.001). CONCLUSION: People living with a life-limiting illness value care that focuses on quality of life, ensures barrier-free access to services and provides sufficient support for relatives. In the context of limited resources and growing demand for care, this study provides evidence about the service elements palliative care delivery models should prioritize and evaluate.

Public health insurance and mortality in the older population: Evidence from the Irish Longitudinal Study on Ageing.

Most developed countries provide publicly-financed insurance for many health services for their populations although there is considerable variation across countries in the types of services covered, eligible population groups and whether co-payments are levied. The Irish healthcare system, with a complex mix of public and private financing of healthcare services, offers a useful case study for an examination of the impact of type of health insurance cover on population health. In this paper, we investigate the extent to which type of health insurance cover is associated with all-cause, cause-specific, and amenable mortality using data on a representative survey of the population aged 50+ from the Irish Longitudinal Study on Ageing (TILDA) matched to administrative data on death registrations. The results show that those without public or private health insurance have a higher risk of all-cause and cancer mortality. However, there is no evidence that type of health insurance cover affects mortality risk from causes that are considered amenable to healthcare intervention, although this analysis was based on a much smaller sample size. This analysis provides important evidence for a country that is implementing reforms to its financing and delivery structures in order to move towards a system of universal healthcare.

Out-of-pocket costs near end of life in low- and middle-income countries: A systematic review.

BACKGROUND: Globally, there is a rise in chronic disease, including cancer, major organ failure and dementias. Patients and their families in low- and middle-income countries (LMICs) pay a high proportion of medical costs out of pocket (OOP), and a diagnosis of serious illness often has catastrophic financial consequences. We therefore conducted a review of the literature to establish what is known about OOP costs near end of life in LMICs. AIMS: To identify, organise and report the evidence on out-of-pocket costs in adult end-of-life populations in LMIC. METHODS: A systematic search of 8 databases and a hand search of relevant systematic reviews and grey literature was performed. Two independent reviewers screened titles and abstracts, assessed papers for eligibility and extracted data. The review was registered with PROSPERO and adhered to the Preferred Reporting items for Systematic Reviews and Meta Analyses. The Mixed Methods Appraisal Tool was used to assess quality. The Wagstaff taxonomy was used to describe OOP. RESULTS: After deduplication, 9,343 studies were screened, of which 51 were read and rejected as full texts, and 12 were included in the final review. OOP costs increased with advanced illness and disease severity. The main drivers of OOP were medications and hospitalizations, with high but variable percentages of the affected populations reporting financial catastrophe, lost income, foregone education and other pressures. CONCLUSION: Despite a small number of included studies and heterogeneity in methodology and reporting, it is clear that OOP costs for care near end of life in LMIC represent an important source of catastrophic health expenditures and impoverishment. This suggests a role for widespread, targeted efforts to avoid poverty traps. Financial protection policies for those suffering from incurable disease and future research on the macro- and micro- economics of palliative care delivery in LMIC are greatly needed.

Common elements of service delivery models that optimise quality of life and health service use among older people with advanced progressive conditions: a tertiary systematic review.

INTRODUCTION: Health and social care services worldwide need to support ageing populations to live well with advanced progressive conditions while adapting to functional decline and finitude. We aimed to identify and map common elements of effective geriatric and palliative care services and consider their scalability and generalisability to high, middle and low-income countries. METHODS: Tertiary systematic review (Cochrane Database of Systematic Reviews, CINAHL, Embase, January 2000-October 2019) of studies in geriatric or palliative care that demonstrated improved quality of life and/or health service use outcomes among older people with advanced progressive conditions. Using frameworks for health system analysis, service elements were identified. We used a staged, iterative process to develop a 'common components' logic model and consulted experts in geriatric or palliative care from high, middle and low-income countries on its scalability. RESULTS: 78 studies (59 geriatric and 19 palliative) spanning all WHO regions were included. Data were available from 17 739 participants. Nearly half the studies recruited patients with heart failure (n=36) and one-third recruited patients with mixed diagnoses (n=26). Common service elements (≥80% of studies) included collaborative working, ongoing assessment, active patient participation, patient/family education and patient self-management. Effective services incorporated patient engagement, patient goal-driven care and the centrality of patient needs. Stakeholders (n=20) emphasised that wider implementation of such services would require access to skilled, multidisciplinary teams with sufficient resource to meet patients' needs. Identified barriers to scalability included the political and societal will to invest in and prioritise palliative and geriatric care for older people, alongside geographical and socioeconomic factors. CONCLUSION: Our logic model combines elements of effective services to achieve optimal quality of life and health service use among older people with advanced progressive conditions. The model transcends current best practice in geriatric and palliative care and applies across the care continuum, from prevention of functional decline to end-of-life care. PROSPERO REGISTRATION NUMBER: CRD42020150252.

Effectiveness of a nurse-delivered (FOCUS+) and a web-based (iFOCUS) psychoeducational intervention for people with advanced cancer and their family caregivers (DIAdIC): study protocol for an international randomized controlled trial.

BACKGROUND: Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers' quality of life. This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads' emotional functioning and self-efficacy. METHODS: We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. DISCUSSION: DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. TRIAL REGISTRATION: Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349 . DATE AND VERSION IDENTIFIER: 20211209_DIAdIC_Protocol_Article.

Using predicted length of stay to define treatment and model costs in hospitalized adults with serious illness: an evaluation of palliative care.

BACKGROUND: Economic research on hospital palliative care faces major challenges. Observational studies using routine data encounter difficulties because treatment timing is not under investigator control and unobserved patient complexity is endemic. An individual's predicted LOS at admission offers potential advantages in this context. METHODS: We conducted a retrospective cohort study on adults admitted to a large cancer center in the United States between 2009 and 2015. We defined a derivation sample to estimate predicted LOS using baseline factors (N = 16,425) and an analytic sample for our primary analyses (N = 2674) based on diagnosis of a terminal illness and high risk of hospital mortality. We modelled our treatment variable according to the timing of first palliative care interaction as a function of predicted LOS, and we employed predicted LOS as an additional covariate in regression as a proxy for complexity alongside diagnosis and comorbidity index. We evaluated models based on predictive accuracy in and out of sample, on Akaike and Bayesian Information Criteria, and precision of treatment effect estimate. RESULTS: Our approach using an additional covariate yielded major improvement in model accuracy: R2 increased from 0.14 to 0.23, and model performance also improved on predictive accuracy and information criteria. Treatment effect estimates and conclusions were unaffected. Our approach with respect to treatment variable yielded no substantial improvements in model performance, but post hoc analyses show an association between treatment effect estimate and estimated LOS at baseline. CONCLUSION: Allocation of scarce palliative care capacity and value-based reimbursement models should take into consideration when and for whom the intervention has the largest impact on treatment choices. An individual's predicted LOS at baseline is useful in this context for accurately predicting costs, and potentially has further benefits in modelling treatment effects.

An Investigation of the Characteristics of Edentulous Patients Who Choose or Refuse Implant Treatment.

PURPOSE: To investigate whether pretreatment patient satisfaction, oral health-related quality of life, or diagnostic complexity are predictive of a decision to choose implant treatment. MATERIALS AND METHODS: Edentulous patients requesting dentures were enrolled in a prospective observational study. All subjects were provided with conventional dentures and then given the option to proceed with the placement of two mandibular implants and to have their prosthesis modified into an implant overdenture. Subjects were classified according to the Prosthodontic Diagnostic Index (PDI-CE) and asked to complete a Denture Satisfaction Questionnaire and the Oral Health Impact Profile for edentulous patients (OHIP-EDENT) at pretreatment, following the provision of new dentures, and following modification to overdentures. RESULTS: Of the 125 subjects who had conventional dentures, 15 proceeded with implant treatment. The subjects who decided to have implants were not significantly different in terms of diagnostic complexity or level of satisfaction. Those who chose implants were significantly younger, had newer dentures, and had higher OHIP-EDENT scores at baseline. The most common reason for not being satisfied with dentures but avoiding implants was fear of surgery. CONCLUSION: The majority of subjects in this study were satisfied with conventional denture treatment, despite registering its limitations. Subjects who were more anatomically compromised were not more likely to choose implant treatment. It remains to be shown whether fear of surgery can be overcome in order to increase the uptake of implant treatment and improve patient outcomes.

Linking death registration and survey data: Procedures and cohort profile for The Irish Longitudinal Study on Ageing (TILDA).

Background: Research on mortality at the population level has been severely restricted by an absence of linked death registration and survey data in Ireland. We describe the steps taken to link death registration information with survey data from a nationally representative prospective study of community-dwelling older adults. We also provide a profile of decedents among this cohort and compare mortality rates to population-level mortality data. Finally, we compare the utility of analysing underlying versus contributory causes of death. Methods: Death records were obtained for 779 and linked to individual level survey data from The Irish Longitudinal Study on Ageing (TILDA).   Results: Overall, 9.1% of participants died during the nine-year follow-up period and the average age at death was 75.3 years. Neoplasms were identified as the underlying cause of death for 37.0%; 32.9% of deaths were attributable to diseases of the circulatory system; 14.4% due to diseases of the respiratory system; while the remaining 15.8% of deaths occurred due to all other causes. Mortality rates among younger TILDA participants closely aligned with those observed in the population but TILDA mortality rates were slightly lower in the older age groups. Contributory cause of death provides similar estimates as underlying cause when we examined the association between smoking and all-cause and cause-specific mortality. Conclusions: This new data infrastructure provides many opportunities to contribute to our understanding of the social, behavioural, economic, and health antecedents to mortality and to inform public policies aimed at addressing inequalities in mortality and end-of-life care.

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study).

BACKGROUND: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality. METHODS: Mortality follow-back postal survey. SETTING: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco). PARTICIPANTS: Informal carers (ICrs) of decedents who had received palliative care. DATA: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG). ANALYSIS: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief. RESULTS: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66-76 h per week from ICrs for 'being on call', 52-55 h for ICrs being with them, 19-21 h for personal care, 17-21 h for household tasks, 15-18 h for medical procedures and 7-10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden. CONCLUSIONS: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.

Preparedness of African Palliative Care Services to Respond to the COVID-19 Pandemic: A Rapid Assessment.

CONTEXT: Palliative care is an essential component of the coronavirus disease 2019 (COVID-19) pandemic response but is overlooked in national and international preparedness plans. The preparedness and capacity of African palliative care services to respond to COVID-19 is unknown. OBJECTIVES: To evaluate the preparedness and capacity of African palliative care services to respond to the COVID-19 pandemic. METHODS: We developed, piloted, and conducted a cross-sectional online survey guided by the 2005 International Health Regulations. It was electronically mailed to the 166 African Palliative Care Association's members and partners. Descriptive analyses were conducted. RESULTS: About 83 participants from 21 countries completed the survey. Most services had at least one procedure for the case management of COVID-19 or another infectious disease (63%). Respondents reported concerns over accessing running water, soap, and disinfectant products (43%, 42%, and 59%, respectively) and security concerns for themselves or their staff (52%). Two in five services (41%) did not have any or make available additional personal protective equipment. Most services (80%) reported having the capacity to use technology instead of face-to-face appointment, and half (52%) reported having palliative care protocols for symptom management and psychological support that could be shared with nonspecialist staff in other health care settings. CONCLUSION: Our survey suggests that African palliative care services could support the wider health system's response to the COVID-19 pandemic with greater resources such as basic infection control materials. It identified specific and systemic weaknesses impeding their preparedness to respond to outbreaks. The findings call for urgent measures to ensure staff and patient safety.

Rehabilitation strategies following oesophagogastric and Hepatopancreaticobiliary cancer (ReStOre II): a protocol for a randomized controlled trial.

BACKGROUND: Curative treatment for upper gastrointestinal (UGI) and hepatopancreaticobiliary (HPB) cancers, involves complex surgical resection often in combination with neoadjuvant/adjuvant chemo/chemoradiotherapy. With advancing survival rates, there is an emergent cohort of UGI and HPB cancer survivors with physical and nutritional deficits, resultant from both the cancer and its treatments. Therefore, rehabilitation to counteract these impairments is required to maximise health related quality of life (HRQOL) in survivorship. The initial feasibility of a multidisciplinary rehabilitation programme for UGI survivors was established in the Rehabilitation Strategies following Oesophago-gastric Cancer (ReStOre) feasibility study and pilot randomised controlled trial (RCT). ReStOre II will now further investigate the efficacy of that programme as it applies to a wider cohort of UGI and HPB cancer survivors, namely survivors of cancer of the oesophagus, stomach, pancreas, and liver. METHODS: The ReStOre II RCT will compare a 12-week multidisciplinary rehabilitation programme of supervised and self-managed exercise, dietary counselling, and education to standard survivorship care in a cohort of UGI and HPB cancer survivors who are > 3-months post-oesophagectomy/ gastrectomy/ pancreaticoduodenectomy, or major liver resection. One hundred twenty participants (60 per study arm) will be recruited to establish a mean increase in the primary outcome (cardiorespiratory fitness) of 3.5 ml/min/kg with 90% power, 5% significance allowing for 20% drop out. Study outcomes of physical function, body composition, nutritional status, HRQOL, and fatigue will be measured at baseline (T0), post-intervention (T1), and 3-months follow-up (T2). At 1-year follow-up (T3), HRQOL alone will be measured. The impact of ReStOre II on well-being will be examined qualitatively with focus groups/interviews (T1, T2). Bio-samples will be collected from T0-T2 to establish a national UGI and HPB cancer survivorship biobank. The cost effectiveness of ReStOre II will also be analysed. DISCUSSION: This RCT will investigate the efficacy of a 12-week multidisciplinary rehabilitation programme for survivors of UGI and HPB cancer compared to standard survivorship care. If effective, ReStOre II will provide an exemplar model of rehabilitation for UGI and HPB cancer survivors. TRIAL REGISTRATION: The study is registered with ClinicalTrials.gov, registration number: NCT03958019, date registered: 21/05/2019.

Preoperative exercise to improve fitness in patients undergoing complex surgery for cancer of the lung or oesophagus (PRE-HIIT): protocol for a randomized controlled trial.

BACKGROUND: Patients with cancer of the lung or oesophagus, undergoing curative treatment, usually require a thoracotomy and a complex oncological resection. These surgeries carry a risk of major morbidity and mortality, and risk assessment, preoperative optimisation, and enhanced recovery after surgery (ERAS) pathways are modern approaches to optimise outcomes. Pre-operative fitness is an established predictor of postoperative outcome, accordingly, targeting pre-operative fitness through exercise prehabilitation has logical appeal. Exercise prehabilitation is challenging to implement however due to the short opportunity for intervention between diagnosis and surgery. Therefore, individually prescribed, intensive exercise training protocols which convey clinically meaningful improvements in cardiopulmonary fitness over a short period need to be investigated. This project will examine the influence of exercise prehabilitation on physiological outcomes and postoperative recovery and, through evaluation of health economics, the impact of the programme on hospital costs. METHODS: The PRE-HIIT Randomised Controlled Trial (RCT) will compare a 2-week high intensity interval training (HIIT) programme to standard preoperative care in a cohort of thoracic and oesophageal patients who are > 2-weeks pre-surgery. A total of 78 participants will be recruited (39 per study arm). The primary outcome is cardiorespiratory fitness. Secondary outcomes include, measures of pulmonary and physical and quality of life. Outcomes will be measured at baseline (T0), and post-intervention (T1). Post-operative morbidity will also be captured. The impact of PRE-HIIT on well-being will be examined qualitatively with focus groups/interviews post-intervention (T1). Participant's experience of preparation for surgery on the PRE-HIIT trial will also be explored. The healthcare costs associated with the PRE-HITT programme, in particular acute hospital costs, will also be examined. DISCUSSION: The overall aim of this RCT is to examine the effect of tailored, individually prescribed high intensity interval training aerobic exercise on pre-operative fitness and postoperative recovery for patients undergoing complex surgical resections, and the impact on use of health services. TRIAL REGISTRATION: The study is registered with Clinical Trials.Gov (NCT03978325). Registered on 7th June 2019.

Economics of Palliative Care for Cancer: Interpreting Current Evidence, Mapping Future Priorities for Research.

The National Cancer Institute estimates that $154 billion will be spent on care for people with cancer in 2019, distributed across the year after diagnosis (31%), the final year of life (31%), and continuing care between those two (38%). Projections of future costs estimate persistent growth in care expenditures. Early research studies on the economics of palliative care have reported a general pattern of cost savings during inpatient hospital admissions and the end-of-life phase. Recent research has demonstrated more complex dynamics, but expanding palliative care capacity to meet clinical guidelines and population health needs seems to save costs. Quantifying these cost savings requires additional research, because there is significant variance in estimates of the effects of treatment on costs, depending on the timing of intervention, the primary diagnosis, and the overall illness burden. Because ASCO guidelines state that palliative care should be provided concurrently with other treatment from the point of diagnosis onward for all metastatic cancer, new and ambitious research is required to evaluate the cost effects of palliative care across the entire disease trajectory. We propose a series of ways to reach the guideline goals.

Drivers of care costs and quality in the last 3 months of life among older people receiving palliative care: A multinational mortality follow-back survey across England, Ireland and the United States.

BACKGROUND: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access. AIM: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries. DESIGN: Mortality follow-back survey. Costs were calculated from carers' reported service use and unit costs. SETTING: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco). PARTICIPANTS: Informal carers of decedents who had received palliative care participated in the study. RESULTS: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly (F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%-16%, palliative care 1%-15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction. CONCLUSION: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.