Palliative and End of Life Care for Black, Asian, and Minority Ethnic Groups in the UK

This report marks the start of a programme of work by many partners. A better understanding of the nation's changing demographics, of the needs of individual ethnic and cultural groups and of the types of services which will best meet their end of life care needs must be early outputs from the partnership. There are many areas which researchers will investigate further and many opportunities for service providers to work together with local communities to develop care which is sensitive and responsive to their needs as well as on a scale which will be needed for the large numbers of people who could benefi

A Review of Palliative Care Service Delivery Models and Patient Outcomes for Adults with Cancer in Selected East and Southeast Asian Countries

Peer reviewedPublisher PD

Local Preferences and Place of Death in Regions within England 2010

This report shows public preferences for place of death in the nine English Government Office Regions (GORs), obtained from a population-based telephone survey in 2010. It compares the results with a similar survey carried out in 2003 to understand how preferences are evolving over time. It goes on to contrast these preferences with actual place of death (as reported for that region) in order to shed light on how people's wishes relate to reality and to aid care planning so that preferences are more frequently met

Current and Future Needs for Hospice Care: An Evidence Based Approach

This report provides evidence on what is known and still needs to be known about patients' and families' needs for hospice care towards the end of life. We focus on crucial factors for hospice care planning for the future in the UK, including the most recent data on actual and projected number of deaths in England, Wales, Scotland and Northern Ireland. This is followed by evidence on people's preferences for place of care and place of death. Finally, we present available evidence on the effectiveness and cost-effectiveness of hospice care and discuss the need for further research. Evidence-based recommendations are provided throughout the report

Role of multilevel policy initiatives in promoting the earlier diagnosis of cancer – what can we learn from the Detect Cancer Early Programme in Scotland?

Background: Early cancer detection and early diagnosis have a key role in multilevel policy initiatives aiming to improve cancer outcomes. In Scotland, the Detect Cancer Early (DCE) Programme was launched in 2012 with the aim to increase the proportion of lung, breast and bowel cancers diagnosed at Stage I by 25%. Initiatives such as DCE are complex, with many interacting components, and influenced by the context. It is important to investigate such initiatives to ensure accountability, to learn from their experience, and inform other strategies. This PhD aimed to investigate the role of multilevel policy initiatives in promoting the earlier diagnosis of cancer, using the DCE Programme as a case study. Objectives were: 1) to understand the international landscape of multilevel policy initiatives promoting earlier cancer diagnosis; 2) to evaluate DCE’s first three years (2012-2015); 3) to compare DCE with other initiatives; and 4) to provide recommendations for policy. Methods: Three studies were carried out: 1) a systematic review (Study 1) synthesising characteristics of multilevel policy initiatives promoting the earlier diagnosis of cancer, their target populations, outcomes and stakeholder views; 2) development and refinement of a mixed-methods, theory-based evaluation (Study 2), carried out through documentary analysis and stakeholder interviews, guided by the Medical Research Council Framework for Process Evaluation of Complex Interventions, complexity theory/systems thinking, and theory-based evaluation in order to elicit programme theory, implementation assumptions and mechanisms of impact; 3) an evaluation of the DCE programme (Study 3); its outcomes (through secondary analyses of data) and processes (whether assumptions and mechanisms were confirmed by stakeholders, barriers and facilitators, and unanticipated outcomes) through stakeholder interviews and an online questionnaire. Results: Study 1: eighteen initiatives from 10 countries were included and grouped as strategies to improve public cancer awareness and/or knowledge, professional education, referral pathways based on cancer symptoms or combinations of these strategies. Most of them targeted patients suspected of having cancer based on high-risk symptom criteria. Very few of them reported on high-level outcomes such as survival (inconclusive results), mortality (one study; higher mortality associated with low use of urgent referral pathways) and tumour staging (some positive results). Other outcomes included positive changes in knowledge/awareness (but limited impact on behaviour) and reduced diagnostic intervals. Views on initiatives were often positive. Study 2: 160 documents were analysed and a logic model was developed; nine stakeholders were interviewed – this resulted in a refined logic model, development of a textual programme theory and outcomes chains, and elicited assumptions and mechanisms to be examined in the evaluation. Study 3: a) outcome evaluation: DCE objectives were often aspirational, with limited outcome measures and data availability – DCE’s key aim was not met, although there were improvements in tumour staging; there was increase in awareness of cancer symptoms and signs, in consultations due to breast symptoms and in requests for bowel screening kits, but barriers to help-seeking persisted; b) process evaluation: 25 stakeholders were interviewed and 53 completed the questionnaire. There was support for an early detection initiative, and most agreed that DCE was part of their role. Increasing diagnostic resources was challenging when there was no staff available to recruit. Communication challenges influenced engagement and sense of ownership. Demand drove action but resulted in frustration, especially when strategies attracted the worried well seeking reassurance. Targets negatively influenced engagement when they were perceived to be unachievable and to have limited clinical relevance. Several barriers and facilitators were described, in addition to unanticipated outcomes. By being a government initiative, DCE brought early cancer detection to the centre of attention, but also generated conflict due to short timescales (not conducive to long-term changes). Discussion: Multilevel policy initiatives give prominence to earlier diagnosis of cancer. There are mixed findings on their benefits, and the ability to measure impact is affected by variation in outcome measures, data availability, and the short-term aspect of government initiatives. In Scotland, the aspirational nature of objectives and limited definition of outcome measures hindered outcome assessment, while the process evaluation highlighted support for DCE, provided that communication is efficient, efforts are acknowledged, structural barriers are recognised and stakeholders are able to see that they can make a difference. Recommendations for policy refer to data quality, relevance and availability; setting measurable objectives; targeting populations at risk; communication and dissemination; and considering contextual influencers. Results show that much can be learned from available initiatives promoting the earlier diagnosis of cancer

Identifying novel biomarkers ready for evaluation in low-prevalence populations for the early detection of upper gastrointestinal cancers: a systematic review

Introduction: Detecting upper gastrointestinal (GI) cancers in primary care is challenging as cancer symptoms are common, often non-specific, and most patients presenting with these symptoms will not have cancer. Substantial investment has been made to develop biomarkers for cancer detection, but few have reached routine clinical practice. We aimed to identify novel biomarkers for upper GI cancers which have been validated sufficiently to be ready for evaluation in low-prevalence populations. Methods: We systematically searched MEDLINE, Embase, Emcare, and Web of Science for studies published in English from January 2000 to October 2019 (PROSPERO registration CRD42020165005). Reference lists of included studies were assessed. Studies had to report on second measures of diagnostic performance (beyond discovery phase) for biomarkers (single or in panels) used to detect pancreatic, oesophageal, gastric, and biliary tract cancers. We included all designs and excluded studies with less than 50 cases/controls. Data were extracted on types of biomarkers, populations and outcomes. Heterogeneity prevented pooling of outcomes. Results: We identified 149 eligible studies, involving 22,264 cancer cases and 49,474 controls. 431 biomarkers were identified (183 microRNAs and other RNAs, 79 autoantibodies and other immunological markers, 119 other proteins, 36 metabolic markers, 6 circulating tumour DNA and 8 other). Over half (n=231) were reported in pancreatic cancer studies. Only 35 biomarkers had been investigated in at least two studies, with reported outcomes for that individual marker for the same tumour type. Apolipoproteins apoAII-AT and apoAII-ATQ and pepsinogens PGI and PGII were the most promising biomarkers for pancreatic and gastric cancer respectively. Conclusion: Most novel biomarkers for the early detection of upper GI cancers are still at an early stage of matureness. Further evidence is needed on biomarker performance in low-prevalence populations, in addition to implementation and health economic studies, before extensive adoption into clinical practice can be recommended.Cancer Research UK C8640/A23385) Paige Druce, Kristi Milley and Jon Emery are supported by the Cancer Australia Primary Care Collaborative Cancer Clinical Trials Group (PC4). Mike Messenger is funded by the NIHR Leeds In Vitro Diagnostic Co-operative (UK

A Review of Palliative Care Service Delivery Models and Patient Outcomes for Adults with Cancer in Selected East and Southeast Asian Countries

Cancer is one of the key leading causes of deaths worldwide, with a disproportionately high burden in Asia in terms of incidence and mortality. Guidelines and recommendations published by the World Health Organization (WHO) state palliative care as an essential service for patients with cancer and other chronic diseases. Currently, there is extensive evidence regarding different models of palliative care delivery. However, development of palliative care services remains fragmented in Asia, and more research is needed to synthesize available models of care in this region and provide the latest evidence-based information for healthcare providers. This narrative review aims to identify peer-reviewed studies published after 2017 that reported both on models of palliative care service delivery and outcomes for adult patients with cancer in selected East and Southeast Asian countries. This review is beneficial by offering a detailed summary of the models of care adopted by these countries, and their impact on patient outcomes. It is hoped that the evidence will also create impetus for continued conversation around palliative care development in Asia

A New Approach to Suffering in Life-Limiting Illness: Total Pain and the Human Microbiome

No abstract available

Impact of the COVID-19 pandemic on cancer assessment in primary care: a qualitative study of GP views

Funding This research was co-funded by the National Institute for Health Research (NIHR) Policy Research Programme, conducted through the Policy Research Unit in Cancer Awareness, Screening and Early Diagnosis, PR-PRU-1217–21601. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. The study was also supported by the CanTest Collaborative funded by Cancer Research UK C8640/A23385, of which Fiona Walter is director, Richard Neal is associate director, Suzanne Scott is co-investigator, and Natalia Calanzani and Stephanie Honey are researchers. The funders of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report.Peer reviewedPublisher PD