Exploring the contextual assumptions, interventions and outcomes of digital advance care planning systems: A theory of change approach to understand implementation and evaluation.

BACKGROUND: Digital advance care planning systems are used internationally to document and share patients' wishes and preferences to inform care delivery. However, their use is impeded by a limited understanding of factors influencing implementation and evaluation. AIM: To develop mid-range programme theory to account for technological, infrastructure and human factor influences on digital advance care planning systems. DESIGN: Exploratory qualitative research design incorporating Theory of Change workshops that explored contextual assumptions affecting digital advance care planning in practice. A mid-range programme theory was developed through thematic framework analysis using the Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework, generating a conceptual model depicting contextual assumptions, interventions and outcomes influencing implementation. PARTICIPANTS: A total of 38 participants (16 from London, 14 from West Yorkshire and 8 online) including patients, carers and health and care professionals (including those with commissioning responsibilities). RESULTS: A conceptual model was generated depicting five distinct components relating to digital advance care planning system use: (sociocultural, technical and structural prerequisites; recognition of the clinical need for conversation; having conversations and documenting decisions; accessing, actioning and amending; and using data to support evaluation, use and implementation). There were differences and uncertainty relating to what digital advance care planning systems are, who they are for and how they should be evaluated. CONCLUSIONS: Digital advance care planning lacks shared beliefs and practices, despite these being essential for complex technology implementation. Our mid-range programme theory can guide their further development and application by considering technological, infrastructure and human factor influences to optimise their implementation.

Sarcopenia interventions in long-term care facilities targeting sedentary behaviour and physical inactivity: A systematic review.

BACKGROUND: Sedentary behaviour and physical inactivity are independent risk factors for sarcopenia for long-term care facility residents. Understanding the components, mechanisms and context of interventions that target change in these risk factors can help optimize sarcopenia management approaches. This study aimed to identify, appraise and synthesize the interventions targeting sedentary behaviour and physical inactivity, construct a Theory of Change logic model, inform complex sarcopenia intervention development and identify areas for improvement. METHODS: Eight electronic databases, including Embase and Web of Science, were searched for eligible interventional studies from inception until February 2024. Narrative synthesis was used. The Theory of Change was applied to develop a logic model presenting the synthesized results. A Cochrane risk of bias assessment tool was used for quality appraisal. RESULTS: The study included 21 articles involving 1014 participants, with mean ages ranging from 72.5 to 90.4 years. The proportion of female participants ranged from 8.0% to 100.0%. The applied sarcopenia diagnosis criteria varied, including those of the Asian Working Group for Sarcopenia and the European Working Group on Sarcopenia in Older People. The overall risk of bias in the included studies was moderate. Interventions primarily targeted physical inactivity, with resistance training being the most common intervention type. The reporting of intervention adherence was insufficient (only 11 out of 21 included studies provided adherence reports), and adherence overall and by intervention type was not possible to discern due to inconsistent criteria for high adherence across these studies. Four categories of intervention input were identified: educational resources; exercise equipment and accessories; monitoring and tailoring tools; and motivational strategies. Intervention activities fell into five categories: determining the intervention plan; educating; tailoring; organizing, supervising, assisting and motivating; and monitoring. While sarcopenia-related indicators were commonly used as desired outcomes, intermediate outcomes (i.e., sedentary time and physical activity level) and other long-term outcomes (i.e., economic outcomes) were less considered. Contextual factors affecting intervention use included participant characteristics (i.e., medical condition and education level) and intervention provider characteristics (i.e., trustworthiness). CONCLUSIONS: The findings led to the development of a novel logic model detailing essential components for interventions aimed at managing sarcopenia in long-term care facilities, with a focus on addressing sedentary behaviour and physical inactivity. Future sarcopenia interventions in long-term care facilities should fully attend to sedentary behaviour, enhance adherence to interventions through improved education, monitoring, tailoring and motivation and establish an agreed standard set of outcome measures.

Co-Designing a Palliative Dementia Care Framework to Support Holistic Assessment and Decision Making: The EMBED-Care Framework.

BACKGROUND: People with dementia have complex palliative care needs that are often unmet, including physical and psycho-social needs. It is essential to empower people with dementia, family carers and professionals to better assess and manage care needs. We aimed to co-design a palliative dementia care Framework delivered through a digital app to support holistic assessment and decision making for care in the community and care homes-the EMBED-Care Framework. METHODS: A systematic co-design approach was adopted to develop the EMBED-Care Framework across three stages: 1) Framework analysis to synthesise data from preceding evidence reviews, large routine clinical data and cohort studies of unmet palliative dementia care need; 2) Co-design using iterative workshops with people with dementia, family carers and health and social care professionals to construct the components, design of the app and implementation requirements; and 3) User testing to refine the final Framework and app, and strengthen use for clinical practice and methods of evaluation. RESULTS: The Framework was co-designed for delivery through an app delivered by aTouchAway. It comprised five main components: 1) holistic assessment of palliative care needs using the Integrated Palliative care Outcome Scale-Dementia (IPOS-Dem); 2) alert system of IPOS-Dem scores to highlight unmet needs; 3) IPOS-Dem scores and alerts enable shared decision making between the practitioner, patient and/or carer to support priority setting and goals of care; 4) evidence-informed clinical decision support tools automatically linked with identified needs to manage care; and 5) Training package for users incorporating face-to-face sessions, clinical champions who received additional face-to-face sessions, animated videos and manual covering the main intervention components and email and telephone support from the research team. CONCLUSIONS: This is a novel digital palliative dementia care intervention to link holistic assessment with clinical decision support tools that are practical and easy to use but address the complexity of palliative dementia care. The Framework is ready for feasibility testing and pilot studies for people with dementia residing at home or in a care home. PATIENT OR PUBLIC CONTRIBUTION: We were guided by our Patient and Public Involvement (PPI) group consisting of three people with mild dementia, including younger onset dementia, and seven family carers throughout the project. They supported the overall development of the Framework, including planning of workshops, interpreting findings and testing the framework in our PPI meetings.

Factors Influencing the Implementation of Digital Advance Care Planning: Qualitative Interview Study.

BACKGROUND: Palliative care aims to improve the quality of life for people with life-limiting illnesses. Advance care planning conversations that establish a patient's wishes and preferences for care are part of a person-centered approach. Internationally, electronic health record systems are digital interventions used to record and share patients' advance care plans across health care services and settings. They aim to provide tools that support electronic information sharing and care coordination. Within the United Kingdom, Electronic Palliative Care Coordination Systems (EPaCCS) are an example of this. Despite over a decade of policy promoting EPaCCS nationally, there has been limited implementation and consistently low levels of use by health professionals. OBJECTIVE: The aim of this study is to explore the factors that influence the implementation of EPaCCS into routine clinical practice across different care services and settings in 2 major regions of England. METHODS: A qualitative interview study design was used, guided by Normalization Process Theory (NPT). NPT explores factors affecting the implementation of complex interventions and consists of 4 primary components (coherence, cognitive participation, collective action, and reflexive monitoring). Health care and social care practitioners were purposively sampled based on their professional role and work setting. Individual web-based semistructured interviews were conducted. Data were analyzed using thematic framework analysis to explore issues which affected the implementation of EPaCCS across different settings at individual, team, organizational, and technical levels. RESULTS: Participants (N=52) representing a range of professional roles were recruited across 6 care settings (hospice, primary care, care home, hospital, ambulatory, and community). In total, 6 themes were developed which mapped onto the 4 primary components of NPT and represented the multilevel influences affecting implementation. At an individual level, these included (1) EPaCCS providing a clear and distinct way of working and (2) collective contributions and buy-in. At a team and organizational level, these included (3) embedding EPaCCS into everyday practice and (4) championing driving implementation. At a technical level, these included (5) electronic functionality, interoperability, and access. Breakdowns in implementation at different levels led to variations in (6) confidence and trust in EPaCCS in terms of record accuracy and availability of access. CONCLUSIONS: EPaCCS implementation is influenced by individual, organizational, and technical factors. Key challenges include problems with access alongside inconsistent use and engagement across care settings. EPaCCS, in their current format as digital advance care planning systems are not consistently facilitating electronic information sharing and care coordination. A redesign of EPaCCS is likely to be necessary to determine configurations for their optimal implementation across different settings and locations. This includes supporting health care practitioners to document, access, use, and share information across multiple care settings. Lessons learned are relevant to other forms of digital advance care planning approaches being developed internationally.

The influence of care home registration type and size on senior care leader's confidence to provide palliative and end-of-life care: an explanatory sequential mixed methods study.

BACKGROUND: Care home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader's confidence in their ability to provide optimal palliative and end-of-life care. AIM: To understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader's confidence to provide palliative and end-of-life care. DESIGN: An explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A 'Following the Thread' method was undertaken for data integration. SETTING/PARTICIPANTS: UK care home senior care leaders, purposively sampled by registration type, size and geographical location. RESULTS: The online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59-4.97, p = 0.33; large - aOR 0.65, 95% CI 0.18-2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) 'feelings of preparedness' stemming from staff expertise and experience and care home infrastructure, (2) 'partnership working' with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance. CONCLUSION: Care home senior care leader's confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes.

Comprehensive geriatric assessment for people with both COPD and frailty starting pulmonary rehabilitation: a mixed-methods feasibility trial.

Introduction: Many people with COPD experience frailty. Frailty increases risk of poor health outcomes, including non-completion of pulmonary rehabilitation. Integrated approaches to support people with COPD and frailty throughout and following rehabilitation are indicated. The aim of the present study was to determine the feasibility of conducting a randomised controlled trial of integrating comprehensive geriatric assessment (CGA) for people with COPD and frailty starting pulmonary rehabilitation. Methods: A multicentre mixed-methods randomised controlled feasibility trial ("Breathe Plus"; ISRCTN13051922) was carried out. People with COPD, aged ≥50 years, Clinical Frailty Scale ≥5 and referred for pulmonary rehabilitation were randomised 1:1 to usual pulmonary rehabilitation, or pulmonary rehabilitation plus CGA. Remote intervention delivery was used during COVID-19 restrictions. Outcomes (physical, psychosocial, service use) were measured at baseline, 90 and 180 days, alongside process data and qualitative interviews. Results: Recruitment stopped at 31 participants (mean±sd age 72.4±10.1 years, 68% Medical Research Council Dyspnoea Scale 4-5), due to COVID-19-related disruptions. Recruitment (46% eligible recruited) and retention (87% at 90- and 180-day follow-up) were acceptable. CGAs occurred on average 60.5 days post-randomisation (range 8-129) and prompted 46 individual care recommendations (median 3 per participant, range 0-12), 65% of which were implemented during follow-up. The most common domains addressed during CGA were nutrition and cardiovascular health. Participants valued the holistic approach of CGA but questioned the optimal time to introduce it. Conclusion: Integrating CGA alongside pulmonary rehabilitation is feasible and identifies unmet multidimensional need in people with COPD and frailty. Given challenges around timing and inclusivity, the integration of geriatric and respiratory care should not be limited to rehabilitation services.

Integration of primary care and palliative care services to improve equality and equity at the end-of-life: Findings from realist stakeholder workshops.

BACKGROUND: Inequalities in access to palliative and end of life care are longstanding. Integration of primary and palliative care has the potential to improve equity in the community. Evidence to inform integration is scarce as research that considers integration of primary care and palliative care services is rare. AIM: To address the questions: 'how can inequalities in access to community palliative and end of life care be improved through the integration of primary and palliative care, and what are the benefits?' DESIGN: A theory-driven realist inquiry with two stakeholder workshops to explore how, when and why inequalities can be improved through integration. Realist analysis leading to explanatory context(c)-mechanism(m)-outcome(o) configurations(c) (CMOCs). FINDINGS: A total of 27 participants attended online workshops (July and September 2022): patient and public members (n = 6), commissioners (n = 2), primary care (n = 5) and specialist palliative care professionals (n = 14). Most were White British (n = 22), other ethnicities were Asian (n = 3), Black African (n = 1) and British mixed race (n = 1). Power imbalances and racism hinder people from ethnic minority backgrounds accessing current services. Shared commitment to addressing these across palliative care and primary care is required in integrated partnerships. Partnership functioning depends on trusted relationships and effective communication, enabled by co-location and record sharing. Positive patient experiences provide affirmation for the multi-disciplinary team, grow confidence and drive improvements. CONCLUSIONS: Integration to address inequalities needs recognition of current barriers. Integration grounded in trust, faith and confidence can lead to a cycle of positive patient, carer and professional experience. Prioritising inequalities as whole system concern is required for future service delivery and research.

Views of patients with progressive illness and carers about the role of digital advance care planning systems to record and share information: A qualitative study.

BACKGROUND: Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care. AIM: To explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development. DESIGN: A qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews. SETTING/PARTICIPANTS: Purposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents. RESULTS: Four generated themes included: 1. 'Why haven't you read what's wrong with me?'; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having 'a say in matters': control and responsibility; 4. Enabling patient and carer control of their records: 'custodianship is key'. CONCLUSIONS: Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems.

Symptom burden, service use and care dissatisfaction among older adults with cancer, cardiovascular disease, respiratory disease, dementia and neurological disease during the last 3 months before death: A pooled analysis of mortality follow-back surveys.

BACKGROUND: Variation in the provision of care and outcomes in the last months of life by cancer and non-cancer conditions is poorly understood. AIMS: (1) To describe patient conditions, symptom burden, practical problems, service use and dissatisfaction with end-of-life care for older adults based on the cause of death. (2) To explore factors related to these variables focussing on the causes of death. DESIGN: Secondary analysis of pooled data using cross-sectional mortality follow-back surveys from three studies: QUALYCARE; OPTCare Elderly; and International Access, Right, and Empowerment 1. SETTING/PARTICIPANTS: Data reported by bereaved relatives of people aged ⩾75 years who died of cancer, cardiovascular disease, respiratory disease, dementia or neurological disease. RESULTS: The pooled dataset contained 885 responses. Overall, service use and circumstances surrounding death differed significantly across causes of death. Bereaved relatives reported symptom severity from moderate to overwhelming in over 30% of cases for all causes of death. Across all causes of death, 28%-38% of bereaved relatives reported some level of dissatisfaction with care. Patients with cardiovascular disease and dementia experienced lower symptom burden and dissatisfaction than those with cancer. The absence of a reliable key health professional was consistently associated with higher symptom burden (p = 0.002), practical problems (p = 0.001) and dissatisfaction with care (p = 0.001). CONCLUSIONS: We showed different trajectories towards death depending on cause. Improving symptom burden and satisfaction in patients at the end-of-life is challenging, and the presence of a reliable key health professional may be helpful.

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.

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.

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.

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.

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.

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.