Public Opinions about Palliative and End-of-life Care during the COVID-19 Pandemic: A Twitter-based Study

BackgroundPalliative and end-of-life care (PEoLC) played a critical role in relieving distress and providing grief support in response to the heavy toll caused by the COVID-19 pandemic. However, little is known about public opinions concerning PEoLC during the pandemic. Given that social media have the potential to collect real-time public opinions, an analysis of this evidence is vital to guide future policy-making. ObjectiveThis study aimed to use social media data to investigate real-time public opinions regarding PEoLC during the COVID-19 crisis and explore the impact of vaccination programs on public opinions about PEoLC. MethodsThis Twitter-based study explored tweets across 3 English-speaking countries: the United States, the United Kingdom, and Canada. From October 2020 to March 2021, a total of 7951 PEoLC-related tweets with geographic tags were retrieved and identified from a large-scale COVID-19 Twitter data set through the Twitter application programming interface. Topic modeling realized through a pointwise mutual information–based co-occurrence network and Louvain modularity was used to examine latent topics across the 3 countries and across 2 time periods (pre- and postvaccination program periods). ResultsCommonalities and regional differences among PEoLC topics in the United States, the United Kingdom, and Canada were identified specifically: cancer care and care facilities were of common interest to the public across the 3 countries during the pandemic; the public expressed positive attitudes toward the COVID-19 vaccine and highlighted the protection it affords to PEoLC professionals; and although Twitter users shared their personal experiences about PEoLC in the web-based community during the pandemic, this was more prominent in the United States and Canada. The implementation of the vaccination programs raised the profile of the vaccine discussion; however, this did not influence public opinions about PEoLC. ConclusionsPublic opinions on Twitter reflected a need for enhanced PEoLC services during the COVID-19 pandemic. The insignificant impact of the vaccination program on public discussion on social media indicated that public concerns regarding PEoLC continued to persist even after the vaccination efforts. Insights gleaned from public opinions regarding PEoLC could provide some clues for policy makers on how to ensure high-quality PEoLC during public health emergencies. In this post–COVID-19 era, PEoLC professionals may wish to continue to examine social media and learn from web-based public discussion how to ease the long-lasting trauma caused by this crisis and prepare for public health emergencies in the future. Besides, our results showed social media’s potential in acting as an effective tool to reflect public opinions in the context of PEoLC

Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation.

BACKGROUND: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness. AIM: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement. DESIGN: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers. SETTING/PARTICIPANTS: Researchers and public members from a palliative care and rehabilitation research institute, UK. RESULTS: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the 'right' people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the 'right' people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects. CONCLUSION: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the National Institute for Health Research (NIHR) Collaboration for Leadership and Applied Health Research and Care South London (NIHR CLAHRC South London) Involvement Activity Funding and Research Capability Funding at King’s College Hospital NHS Foundation Trust. Support was also provided by the NIHR Applied Research Collaboration (ARC) South London at King’s College Hospital Foundation Trust. LJB is supported through a National Institute for Health Research (NIHR) Career Development Fellowship (CDF-2017-10-009). CE is funded by HEE/NIHR Senior Clinical Lectureship. The views expressed in this publication are those of the author(s) and not necessarily those of the funders, the NHS, the National Institute for Health Research or the Department of Health

The impact of alternative distance measures and temporal variation in demand on location-allocation decisions

The aim of the study was to explore the impact of spatio-temporal variations in demand and alternative-based GIS measures on location–allocation. Location-allocation models are mathematical formulations that seek to optimise facility locations (supply) in relation to the spatial distribution of demand and transport networks. However, there are a number of shortcomings to many location-allocation analyses applied to spatial planning. First, in most analyses the demands that are used as inputs to the models are static. Second, location-allocation models usually fail to incorporate demand trends and most analyses only use the most recent demand estimates. Third, distances separating supply and demand locations have been modelled as 3D, by incorporating variations in elevation or as 2D by assuming that the earth's surface is a continuous plane. This thesis addresses these shortcomings by investigating the impact of these factors on location-allocation decisions making based on different case studies. The first analysis explored the impact of short-term spatio-temporal variations through a case study of EMS location planning in Leicestershire. This was achieved by comparing a residential-based location model, which assumes that demand is static with an alternative location model – the travel-to-work model that incorporates dynamic changes in demand due to journey-to-work. The results of the analysis showed clear differences in both approach, in terms of selected locations, demand allocated to selected locations, Average Weighted Distance (AWD) and demand coverage. In the second analysis, the impact of the long-term spatio-temporal variations in demand was explored through a case study of deriving optimal locations for outreach clinics in Leicester. A trend-weighted approach that incorporates the trajectories of changes in demand was compared with the Non-trend weighted model - a traditional approach that ignores the changing demand trend. The results from the comparative analysis indicated that neglecting demand trend over time, consistently underestimates AWD to selected outreach clinic. This finding suggests that current and future access to outreach clinic may be underestimated, when trends in demand are ignored. Finally, the third analysis compared 2D and 3D distances based on a case study of finding optimal locations for EMS in the hilly areas of South Yorkshire and Sheffield. The results indicated that location-allocation results derived from 3D distance measures are not significantly different from results derived from 2D distance measures. Overall, the finding from the comparative analysis using simulated elevation surfaces, demonstrate that other factors such demand weight distributions and distribution of demand and supply locations influence the outcome of the P-median model. The study concluded that 3D distance is more suited for vehicle routing and allocation problems and siting of Automatic External Defiribilators (AEDs) in building interiors and therefore may not be suitable for location planning in the outdoor environment

Predictors of increasing disability in activities of daily living among people with advanced respiratory disease:a multi-site prospective cohort study, England UK

PURPOSE: Disability in activities of daily living (ADL) is a common unmet need among people with advanced respiratory disease. Rehabilitation could help prolong independence, but indicators for timely intervention in this population are lacking. This study aimed to identify trajectories of disability in ADLs over time, and predicting factors, in advanced respiratory disease.METHOD: Multi-site prospective cohort study in people with advanced non-small cell lung cancer (NSCLC), chronic obstructive pulmonary disease (COPD) or interstitial lung disease (ILD), recruited from hospital or community services, throughout England. Disability in basic (Barthel Index) and instrumental (Lawton-Brody IADL Scale) ADLs were assessed monthly over six months. Visual graphical analysis determined individual trajectories. Multivariate logistic regression examined predictors of increasing disability in basic and instrumental ADLs.FINDINGS: Between March 2020 and January 2021, we recruited participants with a diagnosis of NSCLC ( n  = 110), COPD ( n  = 72), and ILD ( n  = 19). 151 participants completed ≥3 timepoints and were included in the longitudinal analysis. Mobility limitation was an independent predictor of increasing disability in instrumental ADLs (odds ratio, 1⋅41 [CI: 1⋅14-1⋅74], p  = 0⋅002). CONCLUSION: Mobility limitation could be used as a simple referral criterion across people with advanced respiratory disease to ensure timely rehabilitation that targets independence in ADLs.</p

Regional variations in geographic access to inpatient hospices and Place of death:A Population-based study in England, UK

BACKGROUND:There is much variation in hospice use with respect to geographic factors such as area-based deprivation, location of patient's residence and proximity to services location. However, little is known about how the association between geographic access to inpatient hospice and hospice deaths varies by patients' region of settlement. STUDY AIM:To examine regional differences in the association between geographic access to inpatient hospice and hospice deaths. METHODS:A regional population-based observational study in England, UK. Records of patients aged ≥ 25 years (n = 123088) who died from non-accidental causes in 2014, were extracted from the Office for National Statistics (ONS) death registry. Our cohort comprised of patients who died at home and in inpatient hospice. Decedents were allocated to each of the nine government office regions of England (London, East Midlands, West Midlands, East, Yorkshire and The Humber, South West, South East, North West and North East) through record linkage with their postcode of usual residence. We defined geographic access as a measure of drive times from patients' residential location to the nearest inpatient hospice. A modified Poisson regression estimated the association between geographic access to hospice, comparing hospice deaths (1) versus home deaths (0). We developed nine regional specific models and adjusted for regional differences in patient's clinical & socio-demographic characteristics. The strength of the association was estimated with adjusted Proportional Ratios (aPRs). FINDINGS:The percentage of deaths varied across regions (home: 86.7% in the North East to 73.0% in the South East; hospice: 13.3% in the North East to 27.0% in the South East). We found wide differences in geographic access to inpatient hospices across regions. Median drive times to hospice varied from 4.6 minutes in London to 25.9 minutes in the North East. We found a dose-response association in the East: (aPRs: 0.22-0.78); East Midlands: (aPRs: 0.33-0.63); North East (aPRs: 0.19-0.87); North West (aPRs: 0.69-0.88); South West (aPRs: 0.56-0.89) and West Midlands (aPRs: 0.28-0.92) indicating that decedents who lived further away from hospices locations (≥ 10 minutes) were less likely to die in a hospice. CONCLUSION:The clear dose-response associations in six regions underscore the importance of regional specific initiatives to improve and optimise access to hospices. Commissioners and policymakers need to do more to ensure that home death is not due to limited geographic access to inpatient hospice care

Urban and rural differences in geographical accessibility to inpatient palliative and end-of-life (PEoLC) facilities and place of death: a national population-based study in England, UK

Abstract Background Little is known about the role of geographic access to inpatient palliative and end of life care (PEoLC) facilities in place of death and how geographic access varies by settlement (urban and rural). This study aims to fill this evidence gap. Methods Individual-level death data in 2014 (N = 430,467, aged 25 +) were extracted from the Office for National Statistics (ONS) death registry and linked to the ONS postcode directory file to derive settlement of the deceased. Drive times from patients’ place of residence to nearest inpatient PEoLC facilities were used as a proxy estimate of geographic access. A modified Poisson regression was used to examine the association between geographic access to PEoLC facilities and place of death, adjusting for patients’ socio-demographic and clinical characteristics. Two models were developed to evaluate the association between geographic access to inpatient PEoLC facilities and place of death. Model 1 compared access to hospice, for hospice deaths versus home deaths, and Model 2 compared access to hospitals, for hospital deaths versus home deaths. The magnitude of association was measured using adjusted prevalence ratios (APRs). Results We found an inverse association between drive time to hospice and hospice deaths (Model 1), with a dose–response relationship. Patients who lived more than 10 min away from inpatient PEoLC facilities in rural areas (Model 1: APR range 0.49–0.80; Model 2: APR range 0.79–0.98) and urban areas (Model 1: APR range 0.50–0.83; Model 2: APR range 0.98–0.99) were less likely to die there, compared to those who lived closer (i.e. ≤ 10 min drive time). The effects were larger in rural areas compared to urban areas. Conclusion Geographic access to inpatient PEoLC facilities is associated with where people die, with a stronger association seen for patients who lived in rural areas. The findings highlight the need for the formulation of end of life care policies/strategies that consider differences in settlements types. Findings should feed into local end of life policies and strategies of both developed and developing countries to improve equity in health care delivery for those approaching the end of life

The role of service factors on variations in place of death: an observational study

Background: Previous studies have revealed that there is significant geographical variation in place of death in (PoD) England, with sociodemographic and clinical characteristics explaining ≤ 25% of this variation. Service factors, mostly modifiable, may account for some of the unexplained variation, but their role had never been evaluated systematically. Methods: A national population-based observational study in England, using National Death Registration Database (2014) linked to area-level service data from public domains, categorised by commissioning, type and capacity, location and workforce of the services, and the service use. The relationship between the service variables and PoD was evaluated using beta regression at the area level and using generalised linear mixed models at the patient level. The relative contribution of service factors at the area level was assessed using the per cent of variance explained, measured by R2. The total impact of service factors was evaluated by the area under the receiver operating characteristic curve (AUC). The independent effect of service variables was measured at the individual level by odds ratios (ORs). Results: Among the 431,735 adult deaths, hospitals were the most common PoD (47.3%), followed by care homes (23.1%), homes (22.5%) and hospices (6.1%). One-third (30.3%) of the deaths were due to cancer and two-thirds (69.7%) were due to non-cancer causes. Almost all service categories studied were associated with some of the area-level variation in PoD. Service type and capacity had the strongest link among all service categories, explaining 14.2–73.8% of the variation; service location explained 10.8–34.1% of the variation. The contribution of other service categories to PoD was inconsistent. At the individual level, service variables appeared to be more useful in predicting death in hospice than in hospital or care home, with most AUCs in the fair performance range (0.603–0.691). The independent effect of service variables on PoD was small overall, but consistent. Distance to the nearest care facility was negatively associated with death in that facility. At the Clinical Commissioning Group level, the number of hospices per 10,000 adults was associated with a higher chance of hospice death in non-cancer causes (OR 30.88, 99% confidence interval 3.46 to 275.44), but a lower chance of hospice death in cancer causes. There was evidence for an interaction effect between the service variables and sociodemographic variables on PoD. Limitations: This study was limited by data availability, particularly those specific to palliative and end-of-life care; therefore, the findings should be interpreted with caution. Data limitations were partly due to the lack of attention and investment in this area. Conclusion: A link was found between service factors and PoD. Hospice capacity was associated with hospice death in non-cancer cases. Distance to the nearest care facility was negatively correlated with the probability of a patient dying there. Effect size of the service factors was overall small, but the interactive effect between service factors and sociodemographic variables suggests that high-quality end-of-life care needs to be built on service-level configuration tailored to individuals’ circumstances. Future work: A large data gap was identified and data collection is required nationally on services relevant to palliative and end-of-life care. Future research is needed to verify the identified links between service factors and PoD. Funding: The National Institute for Health Research Health Services and Delivery Research programme

Predictors of increasing disability in activities of daily living among people with advanced respiratory disease: a multi-site prospective cohort study, England UK

Disability in activities of daily living (ADL) is a common unmet need among people with advanced respiratory disease. Rehabilitation could help prolong independence, but indicators for timely intervention in this population are lacking. This study aimed to identify trajectories of disability in ADLs over time, and predicting factors, in advanced respiratory disease. Multi-site prospective cohort study in people with advanced non-small cell lung cancer (NSCLC), chronic obstructive pulmonary disease (COPD) or interstitial lung disease (ILD), recruited from hospital or community services, throughout England. Disability in basic (Barthel Index) and instrumental (Lawton–Brody IADL Scale) ADLs were assessed monthly over six months. Visual graphical analysis determined individual trajectories. Multivariate logistic regression examined predictors of increasing disability in basic and instrumental ADLs. Between March 2020 and January 2021, we recruited participants with a diagnosis of NSCLC (n = 110), COPD (n = 72), and ILD (n = 19). 151 participants completed ≥3 timepoints and were included in the longitudinal analysis. Mobility limitation was an independent predictor of increasing disability in instrumental ADLs (odds ratio, 1⋅41 [CI: 1⋅14–1⋅74], p = 0⋅002). Mobility limitation could be used as a simple referral criterion across people with advanced respiratory disease to ensure timely rehabilitation that targets independence in ADLs. To our knowledge this is the first prospective cohort study of trajectories of disability in activities of daily living (ADL) in advanced respiratory disease, including recruitment during the Covid-19 pandemic.It adds to existing evidence by identifying individual variability in trajectories of ADL disability which are undetected at group level.The identification of mobility limitation as a predictor of increasing ADL disability, while controlling for malignant or non-malignant respiratory disease, is novel and has practical utility.Our findings have implications for clinical care, as early identification of functional decline through use of mobility limitation tools could flag early referral to rehabilitation services, potentially preventing or delaying forthcoming functional decline and avoiding reactive crisis management.Mobility limitation is a predictor of increasing disability in activities of daily living in advanced disease, which could be used to flag early referral to rehabilitation services, to help prevent or delay forthcoming functional decline and avoid reactive crisis management To our knowledge this is the first prospective cohort study of trajectories of disability in activities of daily living (ADL) in advanced respiratory disease, including recruitment during the Covid-19 pandemic. It adds to existing evidence by identifying individual variability in trajectories of ADL disability which are undetected at group level. The identification of mobility limitation as a predictor of increasing ADL disability, while controlling for malignant or non-malignant respiratory disease, is novel and has practical utility. Our findings have implications for clinical care, as early identification of functional decline through use of mobility limitation tools could flag early referral to rehabilitation services, potentially preventing or delaying forthcoming functional decline and avoiding reactive crisis management. Mobility limitation is a predictor of increasing disability in activities of daily living in advanced disease, which could be used to flag early referral to rehabilitation services, to help prevent or delay forthcoming functional decline and avoid reactive crisis management</p