Randomised controlled trial of population screening for atrial fibrillation in people aged 70 years and over to reduce stroke: protocol for the SAFER trial.

INTRODUCTION: There is a lack of evidence that the benefits of screening for atrial fibrillation (AF) outweigh the harms. Following the completion of the Screening for Atrial Fibrillation with ECG to Reduce stroke (SAFER) pilot trial, the aim of the main SAFER trial is to establish whether population screening for AF reduces incidence of stroke risk. METHODS AND ANALYSIS: Approximately 82 000 people aged 70 years and over and not on oral anticoagulation are being recruited from general practices in England. Patients on the palliative care register or residents in a nursing home are excluded. Eligible people are identified using electronic patient records from general practices and sent an invitation and consent form to participate by post. Consenting participants are randomised at a ratio of 2:1 (control:intervention) with clustering by household. Those randomised to the intervention arm are sent an information leaflet inviting them to participate in screening, which involves use of a handheld single-lead ECG four times a day for 3 weeks. ECG traces identified by an algorithm as possible AF are reviewed by cardiologists. Participants with AF are seen by a general practitioner for consideration of anticoagulation. The primary outcome is stroke. Major secondary outcomes are: death, major bleeding and cardiovascular events. Follow-up will be via electronic health records for an average of 4 years. The primary analysis will be by intention-to-treat using time-to-event modelling. Results from this trial will be combined with follow-up data from the cluster-randomised pilot trial by fixed-effects meta-analysis. ETHICS AND DISSEMINATION: The London-Central National Health Service Research Ethics Committee (19/LO/1597) provided ethical approval. Dissemination will include public-friendly summaries, reports and engagement with the UK National Screening Committee. TRIAL REGISTRATION NUMBER: ISRCTN72104369.

Why do people choose not to take part in screening? Qualitative interview study of atrial fibrillation screening nonparticipation.

INTRODUCTION: While screening uptake is variable, many individuals feel they 'ought' to participate in screening programmes to aid the detection of conditions amenable to early treatment. Those not taking part in screening are often presented as either hindered by practical or social barriers or personally at fault. Why some people choose not to participate receives less consideration. METHODS: We explored screening nonparticipation by examining the accounts of participants who chose not to participate in screening offered by a national research trial of atrial fibrillation (AF) screening in England (SAFER: Screening for Atrial Fibrillation with ECG to Reduce stroke). AF is a heart arrhythmia that increases in prevalence with age and increases the risk of stroke. Systematic screening for AF is not a nationally adopted programme within the United Kingdom; it provides a unique opportunity to explore screening nonparticipation outside of the norms and values attached to existing population-based screening programmes. We interviewed people aged over 65 (n = 50) who declined an invitation from SAFER and analysed their accounts thematically. RESULTS: Beyond practical reasons for nonparticipation, interviewees challenged the utility of identifying and managing AF earlier. Many questioned the benefits of screening at their age. The trial's presentation of the screening as research made it feel voluntary-something they could legitimately decline. CONCLUSION: Nonparticipants were not resistant to engaging in health-promoting behaviours, uninformed about screening or unsupportive of its potential benefits. Instead, their consideration of the perceived necessity, legitimacy and utility of this screening shaped their decision not to take part. PATIENT OR PUBLIC CONTRIBUTION: The SAFER programme is guided by four patient and carer representatives. The representatives are embedded within the team (e.g., one is a co-applicant, another sits on the programme steering committee) and by participating in regular meetings advise on all aspects of the design, management and delivery of the programme, including engaging with interpreting and disseminating the findings. For the qualitative workstream, we established a supplementary patient and public involvement group with whom we regularly consult about research design questions.

Group cognitive stimulation therapy versus usual care for people with intellectual disabilities and dementia (CST-IDD) in the UK: protocol for a mixed-methods feasibility randomised controlled trial.

INTRODUCTION: The prevalence of dementia is almost five times higher in people with intellectual disabilities compared with the general population. However, evidence-based treatments for this population are lacking, as most randomised controlled trials for dementia interventions have not included people with intellectual disabilities. Cognitive stimulation therapy (CST) has a robust evidence base in the general dementia population, consistently showing benefits to cognition, quality of life and being cost-effective. We are conducting a mixed-methods feasibility trial of group CST for people with intellectual disabilities and dementia, to determine if a future definitive randomised controlled trial is feasible. METHODS AND ANALYSIS: Fifty individuals with intellectual disabilities and dementia will be randomised to either the intervention arm (14 sessions of group CST plus treatment as usual) or the control arm (treatment as usual). Randomisation will occur after informed consent has been obtained and baseline assessments completed. Each arm will have 25 participants, with the intervention arm divided into five or more CST groups with three to five participants in each. The outcomes will be feasibility of recruitment, acceptability and adherence of the intervention, suitability of study outcome measures and feasibility of collecting resource use data. Quantitative and qualitative approaches, including semistructured interviews with group participants, carers and group facilitators, will be employed to assess these outcomes. ETHICS AND DISSEMINATION: This study has been approved by Essex REC (Ref: 21/EE/027) and the HRA ethical approval process through the Integrated Research Application System (IRAS ID: 306 756). We plan to publish the results in peer-reviewed journals and conferences as well as provide feedback to funders, sponsors and study participants. TRIAL REGISTRATION NUMBER: ISRCTN88614460.

End-of-life care quality measures: beyond place of death.

BACKGROUND: How quality in healthcare is measured shapes care provision, including how and what care is delivered. In end-of-life care, appropriate measurement can facilitate effective care and research, and when used in policy, highlight deficits and developments in provision and endorse the discipline necessity. The most prevalent end-of-life quality metric, place of death, is not a quality measure: it gives no indication of the quality of care or patient experience in the place of death. AIM: To evaluate alternative measures to place of death for assessing quality of care in end-of-life provision in all settings. METHOD: We examine current end-of-life care quality measures for use as metrics for quality in end-of-life care. We categorise approaches to measurement as either: clinical instruments, mortality follow-back surveys or organisational data. We review each category using four criteria: care setting, patient population, measure feasibility, care quality. RESULTS: While many of the measure types were highly developed for their specific use, each had limitations for measuring quality of care for a population. Measures were deficient because they lacked potential for reporting end-of-life care for patients not in receipt of specialist palliative care, were reliant on patient-proxy accounts, or were not feasible across all care settings. CONCLUSION: None of the current end-of-life care metric categories can currently be feasibly used to compare the quality of end-of-life care provision for all patients in all care settings. We recommend the development of a bespoke measure or judicious selection and combination of existing measures for reviewing end-of-life care quality.

How to embed qualitative research in trials: insights from the feasibility study of the SAFER trial programme.

Qualitative research can enhance the design, conduct and interpretation of trials. Despite this, few trials incorporate qualitative methods, and those that do may not realise their full potential. In this commentary, we highlight how qualitative research can contribute to the design, conduct and day-to-day running of a trial, outlining the working arrangements and relationships that facilitate these contributions. In doing so, we draw on (i) existing frameworks on the role of qualitative research alongside trials and (ii) our experience of integrated qualitative research conducted as part of the feasibility study of the SAFER trial (Screening for Atrial Fibrillation with ECG to Reduce stroke), a cluster randomised controlled trial of screening people aged 70 and above for atrial fibrillation in primary care in England. The activities and presence of the qualitative team contributed to important changes in the design, conduct and day-to-day running of the SAFER feasibility study, and the subsequent main trial, informing diverse decisions concerning trial documentation, trial delivery, timing and content of measures and the information given to participating patients and practices. These included asking practices to give screening results to all participants and not just to 'screen positive' participants, and greater recognition of the contribution of practice reception staff to trial delivery. These changes were facilitated by a 'one research team' approach that underpinned all formal and informal working processes from the outset and maximised the value of both qualitative and trial coordination expertise. The challenging problems facing health services require a combination of research methods and data types. Our experience and the literature show that the benefits of embedding qualitative research in trials are more likely to be realised if attention is given to both structural factors and relationships from the outset. These include sustained and sufficient funding for qualitative research, embedding qualitative research fully within the trial programme, providing shared infrastructure and resources and committing to relationships based on mutual recognition of and respect for the value of different methods and perspectives. We outline key learning for the planning of future trials.Trial registration: Screening for atrial fibrillation with ECG to reduce stroke ISRCTN16939438 (feasibility study); Screening for atrial fibrillation with ECG to reduce stroke - a randomised controlled trial ISRCTN72104369 .

Why do people take part in atrial fibrillation screening? Qualitative interview study in English primary care.

OBJECTIVES: There is insufficient evidence to support national screening programmes for atrial fibrillation (AF). Nevertheless, some practitioners, policy-makers and special interest groups have encouraged introduction of opportunistic screening in primary care in order to reduce the incidence of stroke through earlier detection and treatment of AF. The attitudes of the public towards AF screening are unknown. We aimed to explore why AF screening participants took part in the screening. DESIGN: Semistructured longitudinal interview study of participant engagement in the SAFER study (Screening for Atrial Fibrillation with ECG to Reduce stroke). We undertook initial interviews face to face, with up to two follow-up telephone interviews during the screening process. We thematically analysed and synthesised these data to understand shared views of screening participation. SETTING: 5 primary care practices in the East of England, UK. PARTICIPANTS: 23 people taking part in the SAFER study first feasibility phase. RESULTS: Participants were supportive of screening for AF, explaining their participation in screening as a 'good thing to do'. Participants suggested screening could facilitate earlier diagnosis, more effective treatment, and a better future outcome, despite most being unfamiliar with AF. Participating in AF screening helped attenuate participants' concerns about stroke and demonstrated their commitment to self-care and being a 'good patient'. Participants felt that the screening test was non-invasive, and they were unlikely to have AF; they therefore considered engaging in AF screening was low risk, with few perceived harms. CONCLUSIONS: Participants assessed the SAFER AF screening programme to be a legitimate, relevant and safe screening opportunity, and complied obediently with what they perceived to be a recommendation to take part. Their unreserved acceptance of screening benefit and lack of awareness of potential harms suggests that uptake would be high but reinforces the importance of ensuring participants receive balanced information about AF screening initiatives. TRIAL REGISTRATION NUMBER: ISRCTN16939438; Pre-results.

Individual cognitive stimulation therapy (iCST) for people with intellectual disability and dementia: a feasibility randomised controlled trial.

OBJECTIVES: To examine the feasibility, acceptability and fidelity of individual Cognitive Stimulation Therapy (iCST) in people with intellectual disability (ID) and dementia. METHOD: We aimed to recruit forty dyads (carer and individual with dementia and ID) who were randomised to iCST or a waiting list control group. Both groups received treatment as usual. Family and paid carers delivered the manualised intervention (40 sessions over 20 weeks). Recruitment and retention of participants, intervention adherence, fidelity and acceptability were assessed. Outcome measures of cognition, adaptive functioning, quality of life (QoL) and carer outcomes were collected at baseline, midpoint (11 weeks) and at 21 weeks. Qualitative interviews were conducted with six carers about their experience of iCST. RESULTS: Forty dyads were recruited over 10 months from 12 National Health Service trusts. One dyad dropped out and 87.5% and 97.5% completed the midpoint and end-point assessments respectively. Assessment of fidelity indicated that the correct session structure was not followed; 70% completed at least 20 sessions and there was a high level of satisfaction with iCST. QoL was significantly higher in the iCST arm at 21 weeks (adjusted mean difference: 3.11; 95% CI: 0.64 to 5.58). There were no differences in the other outcome measures. CONCLUSION: The intervention was feasible and acceptable. A full-scale trial is warranted but some modifications are needed, including improved training and supervision for carers to improve fidelity.

Informant-based assessment instruments for dementia in people with intellectual disability: A systematic review and standardised evaluation.

BACKGROUND: Dementia in people with intellectual disability (ID) is frequent but hard to recognise. Evidence-based recommendations for suitable instruments are lacking. AIMS: The present study set out to evaluate informant-based dementia assessment instruments and to provide evidence-based recommendations for instruments most suitable in clinical practice and research. METHOD AND PROCEDURES: A systematic review was conducted across ten international electronic databases. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines, including a risk of bias assessment, was applied to extract information and to evaluate measurement properties and the quality of available evidence. OUTCOMES AND RESULTS: In total, 42 studies evaluating 18 informant-based assessment instruments were analysed. For screening purposes, we recommend the Behavioral and Psychological Symptoms of Dementia in Down Syndrome Scale (BPSD-DS), the Cognitive Scale for Down Syndrome (CS-DS), and the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID). For a more thorough dementia assessment, we recommend the Cambridge Examination for Mental Disorders of Older People with Down's Syndrome and Others with Intellectual Disabilities (CAMDEX-DS). CONCLUSIONS AND IMPLICATIONS: Our study informs clinicians and researchers about adequate, well-evaluated dementia assessment instruments for people with ID, and highlights the need for high quality studies, especially regarding content validity.

Cluster randomised controlled trial of screening for atrial fibrillation in people aged 70 years and over to reduce stroke: protocol for the pilot study for the SAFER trial.

INTRODUCTION: Atrial fibrillation (AF) is a common arrhythmia associated with 30% of strokes, as well as other cardiovascular disease, dementia and death. AF meets many criteria for screening, but there is limited evidence that AF screening reduces stroke. Consequently, no countries recommend national screening programmes for AF. The Screening for Atrial Fibrillation with ECG to Reduce stroke (SAFER) trial aims to determine whether screening for AF is effective at reducing risk of stroke. The aim of the pilot study is to assess feasibility of the main trial and inform implementation of screening and trial procedures. METHODS AND ANALYSIS: SAFER is planned to be a pragmatic randomised controlled trial (RCT) of over 100 000 participants aged 70 years and over, not on long-term anticoagulation therapy at baseline, with an average follow-up of 5 years. Participants are asked to record four traces every day for 3 weeks on a hand-held single-lead ECG device. Cardiologists remotely confirm episodes of AF identified by the device algorithm, and general practitioners follow-up with anticoagulation as appropriate. The pilot study is a cluster RCT in 36 UK general practices, randomised 2:1 control to intervention, recruiting approximately 12 600 participants. Pilot study outcomes include AF detection rate, anticoagulation uptake and other parameters to incorporate into sample size calculations for the main trial. Questionnaires sent to a sample of participants will assess impact of screening on psychological health. Process evaluation and qualitative studies will underpin implementation of screening during the main trial. An economic evaluation using the pilot data will confirm whether it is plausible that screening might be cost-effective. ETHICS AND DISSEMINATION: The London-Central Research Ethics Committee (19/LO/1597) and Confidentiality Advisory Group (19/CAG/0226) provided ethical approval. Dissemination will be via publications, patient-friendly summaries, reports and engagement with the UK National Screening Committee. TRIAL REGISTRATION NUMBER: ISRCTN72104369.

Out-of-hours services and end-of-life hospital admissions: a complex intervention systematic review and narrative synthesis.

BACKGROUND: Out-of-hours (OOH) hospital admissions for patients receiving end-of-life care are a common cause of concern for patients, families, clinicians, and policymakers. It is unclear what issues, or combinations of issues, lead OOH clinicians to initiate hospital care for these patients. AIM: To investigate the circumstances, processes, and mechanisms of UK OOH services-initiated end-of-life care hospital admissions. DESIGN AND SETTING: Systematic literature review and narrative synthesis. METHOD: Eight electronic databases were searched from inception to December 2019 supplemented by hand-searching of the British Journal of General Practice. Key search terms included: 'out-of-hours services', 'hospital admissions', and 'end-of-life care'. Two reviewers independently screened and selected articles, and undertook quality appraisal using Gough's Weight of Evidence framework. Data was analysed using narrative synthesis and reported following PRISMA Complex Intervention guidance. RESULTS: Searches identified 20 727 unique citations, 25 of which met the inclusion criteria. Few studies had a primary focus on the review questions. Admissions were instigated primarily to address clinical needs, caregiver and/or patient distress, and discontinuity or unavailability of care provision, and they were arranged by a range of OOH providers. Reported frequencies of patients receiving end-of-life care being admitted to hospital varied greatly; most evidence related to cancer patients. CONCLUSION: Although OOH end-of-life care can often be readily resolved by hospital admissions, it comes with multiple challenges that seem to be widespread and systemic. Further research is therefore necessary to understand the complexities of OOH services-initiated end-of-life care hospital admissions and how the challenges underpinning such admissions might best be addressed.

Delivering screening programmes in primary care: protocol for a scoping and systematic mixed studies review.

INTRODUCTION: Screening programmes represent a considerable amount of healthcare activity. As complex interventions, they require careful delivery to generate net benefit. Much screening work occurs in primary care. Despite intensive study of intervention delivery in primary care, there is currently no synthesis of the delivery of screening programmes in this setting. The purpose of this review is to describe and critically evaluate the delivery of screening programmes in general practice and community services. METHODS AND ANALYSIS: We will use scoping review methods to explore which components of screening programmes are delivered in primary care and systematic review methods to locate and synthesise evidence on how screening programmes can be delivered in primary care, including barriers, facilitators and strategies. We will include empirical studies of any design which consider screening programmes in high-income countries, based in part or whole in primary care. We will search 20 information sources from 1 January 2000, including those relating to health (eg, MEDLINE, Embase, CINAHL), management (eg, Rx for change database) and grey literature (eg, OpenGrey, screening committee websites). Two reviewers will screen citations and full texts of potentially eligible studies and assess these against inclusion criteria. Qualitative and quantitative data will be extracted in duplicate and synthesised using a best fit framework approach. Within the systematic review, the mixed methods appraisal tool will be used to assess risk of bias. ETHICS AND DISSEMINATION: No ethics approval is required. We will disseminate findings to academics through publication and presentation, to decision-makers through national screening bodies, to practitioners through professional bodies, and to the public through social media. PROSPERO REGISTRATION NUMBER: CRD42020215420.

The difference an end-of-life diagnosis makes: qualitative interviews with providers of community health care for frail older people.

BACKGROUND: Increasing numbers of people die of the frailty and multimorbidity associated with old age, often without receiving an end-of-life diagnosis. Compared to those with a single life-limiting condition such as cancer, frail older people are less likely to access adequate community care. To address this inequality, guidance for professional providers of community health care encourages them to make end-of-life diagnoses more often in such people. These diagnoses centre on prognosis, making them difficult to establish given the inherent unpredictability of age-related decline. This difficulty makes it important to ask how care provision is affected by not having an end-of-life diagnosis. AIM: To explore the role of an end-of-life diagnosis in shaping the provision of health care outside acute hospitals. DESIGN AND SETTING: Qualitative interviews with 19 healthcare providers from community-based settings, including nursing homes and out-of-hours services. METHOD: Semi-structured interviews (nine individual, three small group) were conducted. Data were analysed thematically and using constant comparison. RESULTS: In the participants' accounts, it was unusual and problematic to consider frail older people as candidates for end-of-life diagnosis. Participants talked of this diagnosis as being useful to them as care providers, helping them prioritise caring for people diagnosed as 'end-of-life' and enabling them to offer additional services. This prioritisation and additional help was identified as excluding people who die without an end-of-life diagnosis. CONCLUSION: End-of-life diagnosis is a first-class ticket to community care; people who die without such a diagnosis are potentially disadvantaged as regards care provision. Recognising this inequity should help policymakers and practitioners to mitigate it.

Inclusion of Real-Time Hand Hygiene Observation and Feedback in a Multimodal Hand Hygiene Improvement Strategy in Low-Resource Settings.

Importance: Hand hygiene adherence monitoring and feedback can reduce health care-acquired infections in hospitals. Few low-cost hand hygiene adherence monitoring tools exist in low-resource settings. Objective: To pilot an open-source application for mobile devices and an interactive analytical dashboard for the collection and visualization of health care workers' hand hygiene adherence data. Design, Setting, and Participants: This prospective multicenter quality improvement study evaluated preintervention and postintervention adherence with the 5 Moments for Hand Hygiene, as suggested by the World Health Organization, among health care workers from April 23 to May 25, 2018. A novel data collection form, the Hand Hygiene Observation Tool, was developed in open-source software and used to measure adherence with hand hygiene guidelines among health care workers in the inpatient therapeutic feeding center and pediatric ward of Anka General Hospital, Anka, Nigeria, and the postoperative ward of Noma Children's Hospital, Sokoto, Nigeria. Qualitative data were analyzed throughout data collection and used for immediate feedback to staff. A more formal analysis of the data was conducted during October 2018. Exposures: Multimodal hand hygiene improvement strategy with increased availability and accessibility of alcohol-based hand sanitizer, staff training and education, and evaluation and feedback in near real-time. Main Outcomes and Measures: Hand hygiene adherence before and after the intervention in 3 hospital wards, stratified by health care worker role, ward, and moment of hand hygiene. Results: A total of 686 preintervention adherence observations and 673 postintervention adherence observations were conducted. After the intervention, overall hand hygiene adherence increased from 32.4% to 57.4%. Adherence increased in both wards in Anka General Hospital (inpatient therapeutic feeding center, 24.3% [54 of 222 moments] to 63.7% [163 of 256 moments]; P < .001; pediatric ward, 50.9% [132 of 259 moments] to 68.8% [135 of 196 moments]; P < .001). Adherence among nurses in Anka General Hospital also increased in both wards (inpatient therapeutic feeding center, 17.7% [28 of 158 moments] to 71.2% [79 of 111 moments]; P < .001; pediatric ward, 45.9% [68 of 148 moments] to 68.4% [78 of 114 moments]; P < .001). In Noma Children's Hospital, the overall adherence increased from 17.6% (36 of 205 moments) to 39.8% (88 of 221 moments) (P < .001). Adherence among nurses in Noma Children's Hospital increased from 11.5% (14 of 122 moments) to 61.4% (78 of 126 moments) (P < .001). Adherence among Noma Children's Hospital physicians decreased from 34.2% (13 of 38 moments) to 8.6% (7 of 81 moments). Lowest overall adherence after the intervention occurred before patient contact (53.1% [85 of 160 moments]), before aseptic procedure (58.3% [21 of 36 moments]), and after touching a patient's surroundings (47.1% [124 of 263 moments]). Conclusions and Relevance: This study suggests that tools for the collection and rapid visualization of hand hygiene adherence data are feasible in low-resource settings. The novel tool used in this study may contribute to comprehensive infection prevention and control strategies and strengthening of hand hygiene behavior among all health care workers in health care facilities in humanitarian and low-resource settings.

Home care and end-of-life hospital admissions: a retrospective interview study in English primary and secondary care.

BACKGROUND: Enabling death at home remains an important priority in end-of-life care policy. However, hospital continues to be a more prevalent place of death than home in the UK, with admissions at the end-of-life often negatively labelled. Admissions are frequently attributed to an unsuitable home environment, associated with inadequate family care provision and insufficient professional care delivery. AIM: To understand problems in professional and lay care provision that discourage death at home and lead to hospital admissions at the end of life. DESIGN AND SETTING: A qualitative study of admission to a large English hospital of patients close to the end of their life. METHOD: Retrospective in-depth semi-structured interviews with healthcare professionals (n = 30) and next-of-kin (n = 3) involved in an admission. Interviews addressed why older patients (>65 years) close to the end of life are admitted to hospital. Interviews were transcribed and analysed thematically. RESULTS: Home-based end-of-life care appeared precarious. Hospital admission was considered by healthcare staff when there was insufficient nursing provision, or where family support, which was often extensive but under supported, was challenged. In these circumstances, home was not recognised to be a suitable place of care or death, justifying seeking care provision elsewhere. CONCLUSION: Challenges in home care provision led to hospital admissions. Home end-of-life care depended on substantial input from family and professional carers, both of which were under-resourced. Where either care was insufficient to meet the needs of patients, home was no longer deemed to be desirable by healthcare staff and hospital care was sought.

Ambulance staff and end-of-life hospital admissions: A qualitative interview study.

BACKGROUND: Hospital admissions for end-of-life patients, particularly those who die shortly after being admitted, are recognised to be an international policy problem. How patients come to be transferred to hospital for care, and the central role of decisions made by ambulance staff in facilitating transfer, are under-explored. AIM: To understand the role of ambulance staff in the admission to hospital of patients close to the end of life. DESIGN: Qualitative interviews, using particular patient cases as a basis for discussion, analysed thematically. PARTICIPANTS/SETTING: Ambulance staff ( n = 6) and other healthcare staff (total staff n = 30), involved in the transfer of patients (the case-patients) aged more than 65 years to a large English hospital who died within 3 days of admission with either cancer, chronic obstructive pulmonary disease or dementia. RESULTS: Ambulance interviewees were broadly positive about enabling people to die at home, provided they could be sure that they would not benefit from treatment available in hospital. Barriers for non-conveyance included difficulties arranging care particularly out-of-hours, limited available patient information and service emphasis on emergency care. CONCLUSION: Ambulance interviewees fulfilled an important role in the admission of end-of-life patients to hospital, frequently having to decide whether to leave a patient at home or to instigate transfer to hospital. Their difficulty in facilitating non-hospital care at the end of life challenges the negative view of near end-of-life hospital admissions as failures. Hospital provision was sought for dying patients in need of care which was inaccessible in the community.

Do Patients Want to Die at Home? A Systematic Review of the UK Literature, Focused on Missing Preferences for Place of Death.

BACKGROUND: End-of-life care policy has a focus on enabling patients to die in their preferred place; this is believed for most to be home. This review assesses patient preferences for place of death examining: the extent of unreported preferences, the importance of patient factors (place of care and health diagnosis) and who reports preferences. METHODS AND FINDINGS: Systematic literature review of 7 electronic databases, grey literature, backwards citations from included studies and Palliative Medicine hand search. Included studies published between 2000-2015, reporting original, quantifiable results of adult UK preferences for place of death. Of 10826 articles reviewed, 61 met the inclusion criteria. Summary charts present preferences for place of death by health diagnosis, where patients were asked and who reported the preference. These charts are recalculated to include 'missing data,' the views of those whose preferences were not asked, expressed or reported or absent in studies. Missing data were common. Across all health conditions when missing data were excluded the majority preference was for home: when missing data were included, it was not known what proportion of patients with cancer, non-cancer or multiple conditions preferred home. Patients, family proxies and public all expressed a majority preference for home when missing data were excluded: when included, it was not known what proportion of patients or family proxies preferred home. Where patients wished to die was related to where they were asked their preference. Missing data calculations are limited to 'reported' data. CONCLUSIONS: It is unknown what proportion of patients prefers to die at home or elsewhere. Reported preferences for place of death often exclude the views of those with no preference or not asked: when 'missing data' are included, they supress the proportion of preferences for all locations. Caution should be exercised if asserting that most patients prefer to die at home.

Understanding hospital admissions close to the end of life (ACE) study.

BACKGROUND: Palliative care is a policy priority internationally. In England, policymakers are seeking to develop high quality care for all by focusing on reducing the number of patients who die in acute hospitals. It is argued that reducing 'inappropriate' hospital admissions will lead to an improvement in the quality of care and provide cost savings.Yet what is meant by an 'inappropriate' admission is unclear and is unlikely to be shared by all stakeholders. The decision process that leads to hospital admission is often challenging, particularly when patients are frail and elderly. The ACE study reopens the idea of 'inappropriate' hospital admissions close to the end of life. We will explore how decisions that result in inpatient admissions close to death are made and valued from the perspective of the decision-maker, and will consider the implications of these findings for current policy and practice. DESIGN/METHODS: The study focuses on the admission of patients with advanced dementia, chest disease or cancer who die within 72 hours of admission to acute hospitals. The study uses mixed methods with three data collection phases. Phase one involves patient case studies of admissions with interviews with clinicians involved in the admission and next-of-kin. Phase two uses vignette-based focus groups with clinical professionals and patients living with the conditions of interest. Phase three uses questionnaires distributed to clinical stakeholders. Qualitative data will be explored using framework analysis whilst the questionnaire data will be examined using descriptive statistical analysis. Findings will be used to evaluate current policy and literature. DISCUSSION: Significant ethical and validity issues arise due to the retrospective nature of phase one of the study. We are not able to gain consent from patients who have died, and the views of the deceased patients cannot be included directly, which risks privileging professional views. This phase also relies on the memories of the participants which may be unreliable. Later phases of the study attempt to compensate for the "absent voices" of the deceased patients by including next-of-kin and patient focus groups.