Co-design of the EMBED-Care Framework as an intervention to enhance shared decision-making for people affected by dementia and practitioners, comprising holistic assessment, linked with clinical decision support tools: A qualitative study.

INTRODUCTION: Shared decision-making intends to align care provision with individuals' preferences. However, the involvement of people living with dementia in decision-making about their care varies. We aimed to co-design the EMBED-Care Framework, to enhance shared decision-making between people affected by dementia and practitioners. METHODS: A theory and evidence driven co-design study was conducted, using iterative workshops, informed by a theoretical model of shared decision-making and the EMBED-Care Framework (the intervention) for person-centred holistic palliative dementia care. The intervention incorporates a holistic outcome measure for assessment and review, linked with clinical decision-support tools to support shared decision-making. We drew on the Medical Research Council (MRC) guidance for developing and evaluating complex interventions. Participants included people with dementia of any type, current or bereaved family carers and practitioners. We recruited via established dementia groups and research and clinical networks. Data were analysed using reflexive thematic analysis to explore how and when the intervention could enhance communication and shared decision-making, and the requirements for use, presented as a logic model. RESULTS: Five co-design workshops were undertaken with participants comprising people affected by dementia (n = 18) and practitioners (n = 36). Three themes were generated, comprising: (1) 'knowing the person and personalisation of care', involving the person with dementia and/or family carer identifying the needs of the person using a holistic assessment. (2) 'engaging and considering the perspectives of all involved in decision-making' required listening to the person and the family to understand their priorities, and to manage multiple preferences. (3) 'Training and support activities' to use the Framework through use of animated videos to convey information, such as to understand the outcome measure used to assess symptoms. CONCLUSIONS: The intervention developed sought to enhance shared decision-making with individuals affected by dementia and practitioners, through increased shared knowledge of individual priorities and choices for care and treatment. The workshops generated understanding to manage disagreements in determining priorities. Practitioners require face-to-face training on the intervention, and on communication to manage sensitive conversations about symptoms, care and treatment with individuals and their family. The findings informed the construction of a logic model to illustrate how the intervention is intended to work.

A framework for more equitable, diverse, and inclusive Patient and Public Involvement for palliative care research.

BACKGROUND: There are marked inequalities in palliative care provision. Research is needed to understand how such inequalities can be addressed, so that everyone living with advanced illness can receive the care they need, when they need it. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist services. Multi-disciplinary research partnerships, bringing together primary care (the main providers of palliative care to diverse communities) and specialist palliative care, have the potential to work together in new ways to do research to address inequalities and improve palliative care in practice. This report describes a research partnership between primary care and palliative care that aimed to: (1) create opportunities for more inclusive PPI in palliative care research, (2) co-design new resources to support more equitable, diverse and inclusive PPI for palliative care, (3) propose a new framework for inclusive PPI in palliative care research. METHODS: PPI members were recruited via primary care and palliative care research networks from three diverse areas of the UK. A pragmatic, collaborative approach was taken to achieve the partnership aims. Online workshops were carried out to understand barriers to inclusive PPI in palliative care and to co-design resources. Evaluation included a "you said, we did" impact log and a short survey. The approach was informed by good practice principles from previous PPI, and existing theory relating to equity, equality, diversity, and inclusion. RESULTS: In total, 16 PPI members were recruited. Most were White British (n = 10), other ethnicities were Asian (n = 4), Black African (n = 1) and British mixed race (n = 1). The research team co-ordinated communication and activities, leading to honest conversations about barriers to inclusive PPI. Resources were co-designed, including a role description for an Equity, Equality, Diversity and Inclusion Champion, a "jargon buster", an animation and an online recipe book ( http://www.re-equipp.co.uk/ ) to inform future PPI. Learning from the partnership has been collated into a new framework to inform more inclusive PPI for future palliative care research. CONCLUSION: Collaboration and reciprocal learning across a multi-disciplinary primary care and palliative care research partnership led to the development of new approaches and resources. Research team commitment, shared vision, adequate resource, careful planning, relationship building and evaluation should underpin approaches to increase equality, diversity and inclusivity in future PPI for palliative care research.

Research is needed to understand how inequalities in palliative care can be addressed, so that everyone living with advanced illness can receive the care they need. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist palliative care. Primary care services are grounded in the community they serve and can be the main providers of palliative care, but this is rarely the focus of research. Primary care and palliative care researchers can work together in new ways to do research to address inequalities and improve palliative care in practice. This paper describes the work of the RE-EQUIPP (REducing inEQUalities through Integration of Primary and Palliative Care) Care Partnership. The partnership involved researchers from primary care and palliative care working with people with lived experience of serious illness as patient or carer from three diverse areas of the United Kingdom: (1) London, (2) inner-city Sheffield and (3) Worthing in Sussex, a rural, coastal setting. The project provided opportunity to develop new ways of working and resources for more inclusive and equitable PPI for future palliative care research. Sixteen PPI members from diverse backgrounds and with a range of experience joined the partnership. Workshops were held to understand the barriers to inclusive PPI. New roles and resources were developed, including an Equity, Equality, Diversity and Inclusion Champion role, a "jargon buster", an animation, and an online recipe book to inform future PPI. Learning from the partnership was used to develop a new framework, which is presented to inform inclusive PPI for palliative care research in the future. This outlines the need for research team commitment and shared vision, adequate resource, careful planning, relationship building and evaluation.

Understanding patient and family utilisation of community-based palliative care services out-of-hours: Additional analysis of systematic review evidence using narrative synthesis.

BACKGROUND: Community-based out-of-hours services are an integral component of end-of-life care. However, there is little understanding of how patients and families utilise these services. This additional analysis of a systematic review aims to understand and identify patterns of out-of-hours service use and produce recommendations for future service design. METHOD: Data on service use was extracted and secondary analysis undertaken, from a systematic review of models of community out-of-hours services. Narrative synthesis was completed, addressing four specific aspects of service use: 1.Times when patients/families/healthcare professionals need to contact out-of-hours services; 2. Who contacts out-of-hours services; 3. Whether a telephone call, centre visit or home visit is provided; 4. Who responds to out-of-hours calls. RESULTS: Community-based out-of-hours palliative care services were most often accessed between 5pm and midnight, especially on weekdays (with reports of 69% of all calls being made out-of-hours). Family members and carers were the most frequent callers to of the services (making between 60% and 80% of all calls). The type of contact (telephone, centre visit or home visit) varied based on what was offered and on patient need. Over half of services were led by a single discipline (nurse). CONCLUSIONS: Out-of-hours services are highly used up to midnight, and particularly by patients' family and carers. Recommendations to commissioners and service providers are to: • Increase provision of out-of-hours services between 5pm and midnight to reflect the increased use at these times. • Ensure that family and carers are provided with clear contact details for out-of-hours support. • Ensure patient records can be easily accessed by health professionals responding to calls, making the triage process easier. • Listen to patients, family and carers in the design of out-of-hours services, including telephone services. • Collect data systematically on out-of-hours-service use and on outcomes for patients who use the service.

The association between sedentary behaviour and sarcopenia in older adults: a systematic review and meta-analysis.

BACKGROUND: Sedentary behaviour is considered to contribute to sarcopenia when combined with physical inactivity. Whether sedentary behaviour is independently associated with sarcopenia remains controversial. The aim of this study is to explore the association between sedentary behaviour and sarcopenia in older adults in community and long-term care facility settings. METHODS: Eight electronic databases including MEDLINE, PsycINFO, Wanfang were searched from inception until August 2023. The review included cross-sectional and longitudinal studies concerning the association between sedentary behaviour and sarcopenia among participants over 60 years old. Evidence was pooled by both random-effects meta-analysis and narrative synthesis. Subgroup analyses explored variation according to adjustment of physical activity, settings, and measurements of sedentary behaviour and sarcopenia. Quality assessment for individual studies was performed with the Joanna Briggs Institute (JBI) Critical Appraisal Checklist. RESULTS: Seventeen articles (16 cross-sectional studies and 1 longitudinal study) of 25,788 participants from community or long-term care facility settings were included. The overall quality of the included studies was rated high. Meta-analysis of 14 cross-sectional studies showed that sedentary behaviour was independently positively associated with sarcopenia: pooled odd ratio 1.36 (95% confidence interval, 1.18-1.58). The independent positive association remained in subgroup analyses by adjustment of physical activity, settings, and measurements of sedentary behaviour and sarcopenia. The narrative analysis corroborated the findings of the meta-analysis and provided additional evidence suggesting that interruptions in sedentary periods were linked to a decreased likelihood of developing sarcopenia. CONCLUSIONS: The findings support the hypothesis that sedentary behaviour is independently positively associated with sarcopenia in older adults, providing vital indications for the development of strategies to prevent sarcopenia. SYSTEMATIC REVIEW REGISTRATION: The systematic review protocol has been registered with the PROSPERO database (CRD42022311399).

Co-design of a theory-based implementation plan for a holistic eHealth assessment and decision support framework for people with dementia in care homes.

Background: Despite positive findings around the use of eHealth in dementia care, it is rarely translated into routine practice. This can be facilitated by early involvement of end-users in the development of an implementation plan. This study aimed to co-design strategies to implement an eHealth intervention, the EMBED-Care Framework, to support assessment and decision-making for people with dementia in care homes. Methods: A qualitative co-design method was applied through a series of workshops. Participants included family carers and health and social care practitioners. People with dementia were included through a series of stakeholder engagement meetings. The workshops focused on co-developing strategies in response to identified determinants of implementation. A codebook thematic analytic approach was taken, guided by the Normalisation Process Theory (NPT). Results: Three workshops were conducted from July 2021 to November 2021, attended by 39 participants. Three overarching phases of implementation were identified which aligned with the constructs of the NPT: (a) incentivising adoption of the Framework, which requires promotion of its benefits and alignment with recommendations for good quality dementia care to engage stakeholders, relating to 'coherence' and 'cognitive participation' constructs; (b) enabling its operation, which requires ensuring compatibility with care home processes, provision of training and support from 'champions', relating to 'collective action'; (c) sustaining use of the Framework, which requires monitoring of implementation and appraisal of its effects, relating to 'reflexive monitoring'. Conclusions: We have developed a multi-strategy, theoretically driven plan to implement eHealth to support assessment and decision-making for people with dementia in care homes. Successful implementation requires incentivisation to adopt, ability to operate and motivation to sustain use of eHealth. The plan is strengthened through collaborating with end-users to increase its value, credibility and real-world relevance. The theoretically informed strategies target mechanisms of the NPT, demonstrated to shape the implementation process and outcomes, ready for testing.

Exploring the delivery of end-of-life care by community nurses.

AIMS: To understand what aspects of care and support were important to bereaved relatives and to explore the experiences of nurses delivering end of life care. METHODS: Interviews and focus groups were undertaken with 17 family members, 31 community nurses and 13 community hospital staff. A workshop was held with 6 family members, 13 community nurses and 3 hospital nurses to review findings and make recommendations for improvement. FINDINGS: Four themes were identified: relationships and being treated as a whole person; being able to make choices; getting help when and where it is needed; specialist advice and care, especially at the very end of life. CONCLUSION: Seeking feedback from relatives was valued both by family members and the staff and has provided an effective model to lead to focussed improvements.

Exploring access to community care and emergency department use among people with dementia: A qualitative interview study with people with dementia, and current and bereaved caregivers.

OBJECTIVES: Emergency department (ED) attendance is common among people with dementia and associated with poor health outcomes. Literature suggests a link between access to community care and the ED, but we know little about the mechanisms behind this link. This study aimed to explore experiences of accessing community and emergency care among people affected by dementia. METHODS: Informed by critical realism, semi-structured online and telephone interviews were conducted with people with dementia and family caregivers, with and without experience of using the ED. Participants were recruited from across the United Kingdom using purposive sampling with maximum variation. A mostly experiential reflexive thematic analysis approach was used, applying the candidacy model of access to deepen interpretation. RESULTS: Two dyad and 33 individual interviews were conducted with 10 people with dementia, 11 current caregivers and 16 bereaved caregivers (men = 11, 70-89 years = 18, white ethnicity = 32). Three themes are reported: (1) Navigating a 'push system', (2) ED as the 'last resort', and (3) Taking dementia 'seriously'. Themes describe a discrepancy between the configuration of services and the needs of people affected by dementia, who resort to the ED in the absence of accessible alternatives. Underlying this discrepancy is a lack of systemic prioritisation of dementia and wider societal stigma. CONCLUSION: Although a last resort, ED attendance is frequently the path of least resistance for people with dementia who encounter multiple barriers for timely, responsive access to community health and social care. Greater systemic prioritisation of dementia as a life-limiting condition may help to reduce reliance on the ED through essential development of post-diagnostic care, from diagnosis to the end of life.

Family carers' administration of injectable medications at the end of life: a service evaluation of a novel intervention.

Timely and safe administration of injectable medications for patients at home is vital in optimally managing distressing symptoms in the final days of life. This article discusses a service evaluation of family carers' (including close friends) administrating subcutaneous end-of-life medications. The procedure was not intended to become normal care, rather the exception when appropriate and needed, with 24/7 skilled support from community nursing and palliative care services. A service evaluation of the procedure was undertaken in rural and urban areas in the South East of England. The procedure ran over 6 months and used detailed processes with recruitment criteria to mitigate risk of harm. In total, 11 patients participated with their family carers, including five carers with experience in healthcare roles. Of the 11 family carers, 10 were able to administer injections safely with structured training and support in place. Patients received timely symptom relief and their family carers were able to support loved ones by administering injectable medications rapidly without waiting for a nurse to arrive. This was particularly welcomed in more rural areas where waiting times were greater due to the large geographical area covered and limited staff availability during out-of-hours periods. The findings informed a carefully monitored wider rollout and ongoing evaluation in adult community nursing services in the NHS Trust.

Factors Associated With Depression and Anxiety for Community-Dwelling Patients With Heart Failure: A Retrospective Cohort Study.

BACKGROUND: Depression and anxiety are common comorbidities in heart failure (HF) and are associated with adverse outcomes including unplanned hospitalization. However, there is insufficient evidence on the factors associated with depression and anxiety for community patients with HF to inform optimal assessment and treatment in this population. AIM: The aim of this study was to examine the prevalence of and factors associated with depression and anxiety in community-dwelling patients with HF. METHODS: A retrospective cohort study of 302 adult patients given a diagnosis of HF referred to United Kingdom's largest specialist cardiac rehabilitation center, from June 2013 to November 2020. Main study outcomes were symptoms of depression using Patient Health Questionnaire-9 and anxiety using the General Anxiety Disorder 7-item scale. Explanatory variables included demographic and clinical characteristics and functional status from the Dartmouth COOP questionnaire: quality of life, pain, level of social activity and daily activities, and being bothered by emotional problems (feelings). Logistic regressions were performed to evaluate the association between demographic and clinical characteristics and depression and anxiety. RESULTS: Of the sample, 26.2% reported depression and 20.2% had anxiety. Higher depression and anxiety were associated with difficulty in performing daily activities (95% confidence interval, 1.11-6.46 and 1.13-8.09, respectively) and being bothered by feelings (95% confidence interval, 4.06-21.77 and 4.25-22.46, respectively). Depression was associated with limitations in social activity (95% confidence interval, 1.06-6.34) and anxiety with distressing pain (95% confidence interval, 1.38-7.23). CONCLUSION: Findings indicate the importance of psychosocial interventions for patients with HF to minimize and manage depression and anxiety. Patients with HF may benefit from interventions targeted to maintain independence, promote participation in social activities, and optimally manage pain.

How is community based 'out-of-hours' care provided to patients with advanced illness near the end of life: A systematic review of care provision.

BACKGROUND: Deaths in the community are increasing. However, community palliative care out-of-hours is variable. We lack detailed understanding of how care is provided out-of-hours and the associated outcomes. AIM: To review systematically the components, outcomes and economic evaluation of community-based 'out-of-hours' care for patients near the end of life and their families. DESIGN: Mixed method systematic narrative review. Narrative synthesis, development and application of a typology to categorise out-of-hours provision. Qualitative data were synthesised thematically and integrated at the level of interpretation and reporting. DATA SOURCES: Systematic review searching; MEDLINE, EMBASE, PsycINFO, CINAHL from January 1990 to 1st August 2022. RESULTS: About 64 publications from 54 studies were synthesised (from 9259 retrieved). Two main themes were identified: (1) importance of being known to a service and (2) high-quality coordination of care. A typology of out-of-hours service provision was constructed using three overarching dimensions (service times, focus of team delivering the care and type of care delivered) resulting in 15 categories of care. Only nine papers were randomised control trials or controlled cohorts reporting outcomes. Evidence on effectiveness was apparent for providing 24/7 specialist palliative care with both hands-on clinical care and advisory care. Only nine publications reported economic evaluation. CONCLUSIONS: The typological framework allows models of out-of-hours care to be systematically defined and compared. We highlight the models of out-of-hours care which are linked with improvement of patient outcomes. There is a need for effectiveness and cost effectiveness studies which define and categorise out-of-hours care to allow thorough evaluation of services.

Provision of palliative and end-of-life care in UK care homes during the COVID-19 pandemic: A mixed methods observational study with implications for policy.

Introduction: Little consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care homes. Materials and methods: A mixed methods observational study was conducted, which incorporated (i) an online cross-sectional survey of UK care homes and (ii) qualitative interviews with care home practitioners. Participants for the survey were recruited between April and September 2021. Survey participants indicating availability to participate in an interview were recruited using a purposive sampling approach between June and October 2021. Data were integrated through analytic triangulation in which we sought areas of convergence, divergence, and complementarity. Results: There were 107 responses to the survey and 27 interviews. We found that (i) relationship-centered care is crucial to high-quality palliative and end-of-life care within care homes, but this was disrupted during the pandemic. (ii) Care homes' ability to maintain high-quality relationship-centered care required key "pillars" being in place: integration with external healthcare systems, digital inclusion, and a supported workforce. Inequities within the care home sector meant that in some services these pillars were compromised, and relationship-centered care suffered. (iii) The provision of relationship-centered care was undermined by care home staff feeling that their efforts and expertise in delivering palliative and end-of-life care often went unrecognized/undervalued. Conclusion: Relationship-centered care is a key component of high-quality palliative and end-of-life care in care homes, but this was disrupted during the COVID-19 pandemic. We identify key policy priorities to equip care homes with the resources, capacity, and expertise needed to deliver palliative and end-of-life care: (i) integration within health and social care systems, (ii) digital inclusivity, (iii) workforce development, (iv) support for care home managers, and (v) addressing (dis)parities of esteem. These policy recommendations inform, extend, and align with policies and initiatives within the UK and internationally.

A population-based retrospective cohort study of end-of-life emergency department visits by people with dementia: multilevel modelling of individual- and service-level factors using linked data.

BACKGROUND: emergency department (ED) visits have inherent risks for people with dementia yet increase towards the end-of-life. Although some individual-level determinants of ED visits have been identified, little is known about service-level determinants. OBJECTIVE: to examine individual- and service-level factors associated with ED visits by people with dementia in the last year of life. METHODS: retrospective cohort study using hospital administrative and mortality data at the individual-level, linked to health and social care service data at the area-level across England. The primary outcome was number of ED visits in the last year of life. Subjects were decedents with dementia recorded on the death certificate, with at least one hospital contact in the last 3 years of life. RESULTS: of 74,486 decedents (60.5% women; mean age 87.1 years (standard deviation: 7.1)), 82.6% had at least one ED visit in their last year of life. Factors associated with more ED visits included: South Asian ethnicity (incidence rate ratio (IRR) 1.07, 95% confidence interval (CI) 1.02-1.13), chronic respiratory disease as the underlying cause of death (IRR 1.17, 95% CI 1.14-1.20) and urban residence (IRR 1.06, 95% CI 1.04-1.08). Higher socioeconomic position (IRR 0.92, 95% CI 0.90-0.94) and areas with higher numbers of nursing home beds (IRR 0.85, 95% CI 0.78-0.93)-but not residential home beds-were associated with fewer ED visits at the end-of-life. CONCLUSIONS: the value of nursing home care in supporting people dying with dementia to stay in their preferred place of care must be recognised, and investment in nursing home bed capacity prioritised.

Needs-based triggers for timely referral to palliative care for older adults severely affected by noncancer conditions: a systematic review and narrative synthesis.

BACKGROUND: Older people with noncancer conditions are less likely to be referred to palliative care services due to the inherent uncertain disease trajectory and a lack of standardised referral criteria. For older adults with noncancer conditions where prognostic estimation is unpredictable, needs-based criteria are likely more suitable. Eligibility criteria for participation in clinical trials on palliative care could inform a needs-based criteria. This review aimed to identify and synthesise eligibility criteria for trials in palliative care to construct a needs-based set of triggers for timely referral to palliative care for older adults severely affected by noncancer conditions. METHODS: A systematic narrative review of published trials of palliative care service level interventions for older adults with noncancer conditions. Electronic databases Medline, Embase, CINAHL, PsycINFO, CENTRAL, and ClinicalTrials.gov. were searched from inception to June 2022. We included all types of randomised controlled trials. We selected trials that reported eligibility criteria for palliative care involvement for older adults with noncancer conditions, where > 50% of the population was aged ≥ 65 years. The methodological quality of the included studies was assessed using a revised Cochrane risk-of-bias tool for randomized trials. Descriptive analysis and narrative synthesis provided descriptions of the patterns and appraised the applicability of included trial eligibility criteria to identify patients likely to benefit from receiving palliative care. RESULTS: 27 randomised controlled trials met eligibility out of 9,584 papers. We identified six major domains of trial eligibility criteria in three categories, needs-based, time-based and medical history-based criteria. Needs-based criteria were composed of symptoms, functional status, and quality of life criteria. The major trial eligibility criteria were diagnostic criteria (n = 26, 96%), followed by medical history-based criteria (n = 15, 56%), and physical and psychological symptom criteria (n = 14, 52%). CONCLUSION: For older adults severely affected by noncancer conditions, decisions about providing palliative care should be based on the present needs related to symptoms, functional status, and quality of life. Further research is needed to examine how the needs-based triggers can be operationalized as referral criteria in clinical settings and develop international consensus on referral criteria for older adults with noncancer conditions.

Frailty and Mortality Risk in COPD: A Cohort Study Comparing the Fried Frailty Phenotype and Short Physical Performance Battery.

Background: Identifying frailty in people with chronic obstructive pulmonary disease (COPD) is deemed important, yet comparative characteristics of the most commonly used frailty measures in COPD are unknown. This study aimed to compare how the Fried Frailty Phenotype (FFP) and Short Physical Performance Battery (SPPB) characterise frailty in people with stable COPD, including prevalence of and overlap in identification of frailty, disease and health characteristics of those identified as living with frailty, and predictive value in relation to survival time. Methods: Cohort study of people with stable COPD attending outpatient clinics. Agreement between frailty classifications was described using Cohen's Kappa. Disease and health characteristics of frail versus not frail participants were compared using t-, Mann-Whitney U and Chi-Square tests. Predictive value for mortality was examined with multivariable Cox regression. Results: Of 714 participants, 421 (59%) were male, mean age 69.9 years (SD 9.7), mean survival time 2270 days (95% CI 2185-2355). Similar proportions were identified as frail using the FFP (26.2%) and SPPB (23.7%) measures; classifications as frail or not frail matched in 572 (80.1%) cases, showing moderate agreement (Kappa = 0.469, SE = 0.038, p < 0.001). Discrepancies seemed driven by FFP exhaustion and weight loss criteria and the SPPB balance component. People with frailty by either measure had worse exercise capacity, health-related quality of life, breathlessness, depression and dependence in activities of daily living. In multivariable analysis controlling for the Age Dyspnoea Obstruction index, sex, BMI, comorbidities and exercise capacity, both the FFP and SPPB had predictive value in relation to mortality (FFP aHR = 1.31 [95% CI 1.03-1.66]; SPPB aHR = 1.29 [95% CI 0.99-1.68]). Conclusion: In stable COPD, both the FFP and SPPB identify similar proportions of people living with/without frailty, the majority with matching classifications. Both measures can identify individuals with multidimensional health challenges and increased mortality risk and provide additional information alongside established prognostic variables.

Mapping and characterising electronic palliative care coordination systems and their intended impact: A national survey of end-of-life care commissioners.

OBJECTIVES: In England, Electronic Palliative Care Coordination Systems (EPaCCS) were introduced in 2008 to support care coordination and delivery in accordance with patient preferences. Despite policy supporting their implementation, there has been a lack of rigorous evaluation of EPaCCS and it is not clear how they have been translated into practice. This study sought to examine the current national implementation of EPaCCS, including their intended impact on patient and service outcomes, and barriers and facilitators for implementation. METHODS: We conducted a national cross-sectional online survey of end-of-life care commissioning leads for Clinical Commissioning Groups (CCGs) in England. We enquired about the current implementation status of EPaCCS, their role in information sharing and intended impact, and requested routine patient-level data relating to EPaCCS. RESULTS: Out of 135 CCGs, 85 (63.0%) responded, with 57 (67.1%) having operational EPaCCS. Use of EPaCCS were confined to healthcare providers with most systems (67%) not supporting information sharing with care homes and social care providers. Most systems (68%) sought to facilitate goal concordant care, although there was inconsonance between intended impacts and monitoring measures used. Common challenges to implementation included healthcare professionals' limited engagement. Only one-third of patients had an EPaCCS record at death with limited recording of patient preferences. CONCLUSIONS: Critical gaps exist in engagement with EPaCCS and their ability to facilitate information sharing across care providers. The limited alignment between stated goals of EPaCCS and their monitoring impedes efforts to understand which characteristics of systems can best support care delivery.

Methodology for quantitative rock characterisation using multiple imaging systems and random particles generation.

The characterisation technologies have advanced rapidly in the last decade. From a qualitative observation of minerals with optical microscopy, more quantitative techniques have emerged. Examples are the SEM-based technologies that focus on mineralogical identification at the microscale and the X-ray microtomography systems that allow identifying rock features in three dimensions. Features such as rock texture and mineralogy have a degree of control on how the rock behaves in the processing plant and thus can affect the project's economic feasibility. None of the available measurement devices is currently capable of identifying all the aspects of rock characteristics that are of interest in linking mineralogy and texture to process response in a single measurement. However, through the integrated use of the techniques in a complementary approach is possible to generate the required suite of information about the mineralogical composition and mineral grain size and shape in a given sample. A multisource method for rock characterisation has been developed in this work. This method includes: • A multistage imaging process that uses 2D and 3D microscopes • An object-segmentation technique to separate mineral grains in the photomicrographs for the quantification of mineralogical and textural properties. • A segmentation technique was developed to create particles of different sizes from a larger image.

Post-traumatic growth 5 years after cancer: identification of associated actionable factors.

BACKGROUND: The number of cancer survivors is growing increasingly worldwide. The long-term negative consequences of the disease are now better known. Cancer may also foster positive outcomes. Some survivors consider life after cancer as the start of a new life and experience positive changes called post-traumatic growth (PTG) measured by a scale developed by Tedeschi and Calhoun. OBJECTIVE: The purpose of this article was to explore actionable factors affecting PTG, particularly those in relation with health care management and those that reflected health behavior changes. METHODS: This study included the 1,982 participants in the VICAN cohort who responded to the questionnaire on living conditions 2 and 5 years after diagnosis. Factors associated with a moderate or high PTG (score ≥ 63) were identified using logistic regressions. RESULTS: Factors positively associated with moderate or high PTG were being satisfied with the time spent by health care team on information (OR:1.35 [1.08;1.70]), increased physical activity (OR:1.42 [1.04;1.95]) and healthier diet (OR:1.85 [1.44;2.36]) since diagnosis, and having benefited from psychological support at diagnosis (OR:1.53 [1.16;2.01]). CONCLUSION: High PTG is positively associated with health behavior and time spent on information. Our findings suggest that appropriate clinical and educational interventions can help foster growth after the experience of cancer. Even if we do not know what causes what, it is admitted that the interventions leading to an increase of physical activity, for example, are good from all points of view.

Formal and Informal Costs of Care for People With Dementia Who Experience a Transition to Hospital at the End of Life: A Secondary Data Analysis.

OBJECTIVES: To explore formal and informal care costs in the last 3 months of life for people with dementia, and to evaluate the association between transitions to hospital and usual place of care with costs. DESIGN: Cross-sectional study using pooled data from 3 mortality follow-back surveys. SETTING AND PARTICIPANTS: People who died with dementia. METHODS: The Client Service Receipt Inventory survey was used to derive formal (health, social) and informal care costs in the last 3 months of life. Generalized linear models were used to explore the association between transitions to hospital and usual place of care with formal and informal care costs. RESULTS: A total of 146 people who died with dementia were included. The mean age was 88.1 years (SD 6.0), and 98 (67.1%) were female. The usual place of care was care home for 85 (58.2%). Sixty-five individuals (44.5%) died in a care home, and 85 (58.2%) experienced a transition to hospital in the last 3 months. The mean total costs of care in the last 3 months of life were £31,224.7 (SD 23,536.6). People with a transition to hospital had higher total costs (£33,239.2, 95% CI 28,301.8-39,037.8) than people without transition (£21,522.0, 95% CI 17,784.0-26,045.8), mainly explained by hospital costs. People whose usual place of care was care homes had lower total costs (£23,801.3, 95% CI 20,172.0-28,083.6) compared to home (£34,331.4, 95% CI 27,824.7-42,359.5), mainly explained by lower informal care costs. CONCLUSIONS AND IMPLICATIONS: Total care costs are high among people dying with dementia, and informal care costs represent an important component of end-of-life care costs. Transitions to hospital have a large impact on total costs; preventing these transitions might reduce costs from the health care perspective, but not from patients' and families' perspectives. Access to care homes could help reduce transitions to hospital as well as reduce formal and informal care costs.

Palliative long-term abdominal drains for the management of refractory ascites due to cirrhosis: a consensus document.

Palliative care remains suboptimal in advanced cirrhosis, in part relating to a lack of evidence-based interventions. Ascites remains the most common cirrhosis complication resulting in hospitalisation. Many patients with refractory ascites are not candidates for liver transplantation or transjugular intrahepatic portosystemic shunt, and therefore, require recurrent palliative large volume paracentesis in hospital. We review the available evidence on use of palliative long-term abdominal drains in cirrhosis. Pending results of a national trial (REDUCe 2) and consistent with recently published national and American guidance, long-term abdominal drains cannot be regarded as standard of care in advanced cirrhosis. They should instead be considered only on a case-by-case basis, pending definitive evidence. This manuscript provides consensus to help standardise use of long-term abdominal drains in cirrhosis including patient selection and community management. Our ultimate aim remains to improve palliative care for this under researched and vulnerable cohort.