bluuebunny/crossref_metadata_2025_split huggingface dataset:
3 Is it acceptable to use technical monitoring to assess palliative care patients’ level of consciousness? a qualitative exploration with patients and relatives
Authors: Krooupa Anna-Maria , Stone Paddy , McKeever Stephen , Vivat Bella 
Published: August 2018

IntroductionBispectral Index (BIS) monitoring uses electroencephalographic data to objectively measure patients’ level of consciousness and might be a useful supplement to clinical observation when using sedative medication in palliative care. However its acceptability to UK palliative care service users is unknown.AimTo explore the acceptability of BIS technology with UK hospice patients and relatives.MethodsWe conducted focus groups and individual interviews with patients and relatives in a UK hospice and analysed data thematically.Results10 patients and 15 relatives participated in seven focus groups and three interviews. Responses from patient participants were similar to those from relatives and four themes emerged:Knowledge and experience of current monitoring of sedation/consciousnessAcceptable duration of monitoringReservations about using technological devices in palliative carePotential benefits of using BIS.Participants’ comments on potential benefits included that BIS alongside routine clinical practice might help ensure comfort at the end of life and serve to assure medical needs are being met particularly for people who cannot communicate. Participants generally felt that the duration of BIS monitoring should be informed by each patient’s individual needs while some expressed that patients and/or families should be consulted before using the monitor. Participants also noted that BIS while possibly obtrusive is not invasive.ConclusionsOur participants considered BIS acceptable for monitoring level of consciousness and possibly helpful at the end of life. We therefore initiated an observational study exploring use of this technology in the clinical care of UK hospice inpatients.
30 Consensus and consistency: development of a core outcome set for evaluating bereavement support in palliative care
Authors: Longo Mirella , Scott Hannah , Seddon Kathy , Fitzgibbon Jim , Morgan Fiona , Pickett Sara , Byrne Anthony , Sivell Stephanie , Nelson Annmarie , Harrop Emily 
Published: August 2018

BackgroundPalliative care has an established role in the provision of bereavement support. However the research evidence is limited and a lack of consistency in the outcomes used to evaluate services makes it difficult to draw conclusions on their relative effectiveness. Core Outcome Sets (COS) represent the ‘minimum that should be measured and reported’ in research into specific conditions or services making it easier to compare evaluation results [www.comet-initiative.org].AimTo develop a COS for evaluating bereavement support in palliative care for adults who have lost adults through terminal illness.MethodologyFour stages were used to identify agreement on the core outcome Set. Stage 1) a systematic review of qualitative and quantitative papers. Stage 2) a first consensus day of 21 people with expertise in bereavement support (including: adults with bereavement experience providers of bereavement support services researchers) who discussed and amended the outcomes emerging from the review of the literature. Stage 3) a two-round DELPHI survey of 238 bereavement experts. Stage 4) a second consensus day of 23 experts who discussed and reached agreement on the ranking of outcome measures emerging form the DELPHI survey.ResultsPreliminary analysis of the consensus days and survey results suggest that the most important outcomes to use are ‘ability to cope’ and ‘mental health and wellbeing’. Core dimensions to explore when assessing these outcomes have also been identified.ConclusionAvailable validated tools are being reviewed for their suitability. Gaps will be highlighted with further work planned to adapt or develop measures as necessary.
36 ‘Spells of care’ could work magic in the community
Authors: Penman Janice 
Published: August 2018

BackgroundIn palliative care objective measurement of our clinical effectiveness has always been an area of concern. An ongoing ever increasing demand for specialist palliative care community services means that managing caseloads can be a challenge. There is very little literature or evidence of good practice around this important part of specialist community palliative care.MethodThe suite of OACC measures were introduced to a hospice community team service to help with caseload management. CNSs began to deliver more short term interventions or spells of care to a patient and their family with the aim of resolving particular problems. A telephone caseload was initiated and this allowed the CNSs to maintain contact with patients with stable symptoms but with the potential to deteriorate. Use of IPOS has defined these spells of care enabling discharge either back to primary care team other supportive hospice services or to the telephone caseload. IPOS also helped us to identify patients in the unstable phase of illness.ResultsWe have seen a 35% reduction in the average length of time our patients are on a community caseload at the same time as 21% of community patients being managed on a telephone case load. These figures are based on referrals from April 2017 to June 2018.ConclusionWe expect that using spells of care to define caseload size will be a more sustainable way to maintain manageable caseloads in the future. They will also help us to focus more on patients in the unstable phase of illness where most benefit from palliative care services can be expected.Reference. Witt J, de Wolf-Linder S, Dawkins M, Daveson BA, Higginson IJ, Murtagh FEM. Introducing the outcome assessment and complexity collaborative suite of measures.A Brief Introduction – Version 22015.
37 The role of the research nurse in developing a research culture at a hospice
Authors: Perry Rachel 
Published: August 2018

The National Institute of Health Research and Charities Consortium for Hospice and Community Research have stated that the goal for all hospices is to be research active and to be recruiting into portfolio studies by 2022. This poster draws on a case study from one research nurse as she sought to develop research capacity at a hospice in the West Midlands. The poster aims to highlight four key areas the innovative role covers showing how a research nurse is central to:Facilitating engagement with research at the hospice. From introducing (sceptical) staff to the range of research studies they can be involved in to the opportunities to embed research into the daily work of both the in–patient and day servicesBeing a bridge between the often–competing pressures of clinical care and research by finding novel solutions to obstaclesEmpowering staff by encouraging them to be a part of research in everyday practice as well as being a resource for staff by supporting them with academic assignments producing posters for conferences and disseminating research findings through journal discussionsBuilding future research opportunities by developing a research nurse network where ideas and good practice can be shared widely across different organisations.
51 How do family carers feature in end of life care policy? scoping review and narrative summary of uk national policy/guidelines on implementing carer assessment and support
Authors: Ewing Gail , Grande Gunn 
Published: August 2018

BackgroundThe ethos of end-of-life-care (EOLC) embraces both carers and patients. For over a decade UK healthcare policy has acknowledged that carers’ needs should be assessed and addressed in EOLC.AimTo review national policy/guidelines on carers and EOLC examine how policy addresses carer assessment/support and its implementation in practice.MethodsScoping review through searches of public body websites (e.g., Department of Health and NICE); provider organisations (e.g., National Council for Palliative Care Hospice UK) and charities (e.g., Carers UK Carers Trust) personal sources (researcher libraries personal contacts serendipitous discovery) ‘snowballing’ and reference checking. Included: publications 2004–2018 national guidance on EOLC delivery or adult carers. Excluded: policy/guidance on children. Policy content mapped to areas key of practice implementation for carers at individual and organisation levels.ResultsContent mapping identified EOLC practice implementation issues for patients rarely for carers. Conversely generic carer strategy/guidance focused on carers with little reference to EOLC. Key findings were:Move from a distinct carer focus (their assessment/support) in early guidance to a joint patient/carer approach with corresponding loss of recognition of carers’ separate situationLimiting carer assessment to statutory social–care assessments which do not address need for healthcare supportLack of detail on structures and processes required for organisational implementation of carer assessment and support.Policy guidance lacks a focus on carers a comprehensive health and social care approach and detail on processes and structures required for implementation of carer assessment and support in practice that hinders improvement of carer support.FunderHospice UK and NIHR CLARHC Greater Manchester
53 The palliative care needs of people with motor neurone disease (MND) and their informal caregivers: a time for change
Authors: Flemming Kate , Turner Victoria 
Published: August 2018

IntroductionDespite being a terminal neurodegenerative disease the role of palliative care is less recognised for MND than for conditions such as cancer. The palliative care needs of patients and carers must be understood in order to best configure policy and health care services for this population.AimTo explore the palliative care needs of adult patients and their informal carers living with MND or bereaved carers of people with MND through a systematic review of qualitative research.MethodFour electronic databases were searched (MEDLINE CINAHL PsycINFO Social Science Citation Index) using terms for MND ALS palliative care and a qualitative research filter. Included papers were data extracted and assessed for quality. The review was conducted using thematic synthesis.Results410 papers were identified and 39 included representing the experiences of 456 people with MND and 345 informal caregivers.Two sets of analytical themes were identified. The first represents the disease trajectory and specific chronological points within it. The second details three sets of influencing factors (internal external and connecting factors) that impact on people’s experiences of events along the disease trajectory. Analysing the intersections of these themes highlighted which palliative care needs are most required at each stage.ConclusionDespite being a life-limiting condition people with MND and their carers have limited awareness of or involvement with palliative care services. There are clear points in the disease trajectory where palliative care input could enhance patient and carer experience of the disease particularly at times of significant physical change.
54 Interventions and support for people bereaved through advanced progressive illness: a mixed-methods systematic review
Authors: Morgan Fiona , Scott Hannah , Longo Mirella , Byrne Anthony , Fitzgibbon Jim , Nelson Annmarie , Pickett Sara , Seddon Kathy , Sivell Stephanie , Harrop Emily 
Published: August 2018

BackgroundPalliative care has an important role to play in addressing the bereavement needs of families. A small number of systematic reviews of bereavement interventions are available1 2but these have typically been restricted to evidence from randomised controlled trials (RCTs) and provide little information on support specifically provided in palliative care settings.AimThis mixed method review identifies interventions and services providing bereavement support for adults bereaved through advanced progressive illness and looks at both the quantitative and qualitative evidence for their effectiveness and utility.MethodsKey databases were searched for papers published between 1990 and 2016. Supplementary searches were also conducted. The review includes studies conducted in the UK or comparable countries reporting evaluations of interventions or services delivered to adults bereaved through advanced progressive illness. Study quality was assessed using appropriate checklists.ResultsThirty-nine studies met the inclusion criteria for the review including seven RCTs. Evidence from the trials reported improvements in a range of physical and mental health outcomes. However the studies were generally of poor quality with heterogenous populations and outcomes. Evidence from qualitative studies identified a number of positive impacts for service users including facilitating loss and grief resolution restoration and moving on acquisition of coping strategies and social support.ConclusionsWhilst the qualitative evidence suggests important benefits of bereavement care for service users this is not matched by strong trial-based evidence. Conclusions that may be drawn on effectiveness are therefore limited by lack of rigorous evaluation studies conducted in this area.References. Forte AL, Hill M, Pazder R, Feudtner C. Bereavement care interventions: A systematic review. BMC Palliative Care2004;3(1).. Currier J, Neimeyer R, Berman J. The effectiveness of psychotherapeutic interventions for bereaved persons: A comprehensive quantitative review. Psychological Bulletin2008;134(5):648–661.
57 Evidence into practice: novel approaches to underpinning evidence-based innovations in care
Authors: Mann Mala , Nelson Annmarie , Woodward Amanda , Islam Ishrat , Byrne Anthony 
Published: August 2018

BackgroundDeveloping and implementing novel models of care requires a robust approach to identifying and assessing existing evidence. Rapid reviews have emerged as an efficient approach. There is a growing number of rapid review ‘methods’ but no accepted standardised methodology. We describe the methodological options and an example the Palliative Care Evidence Review Service (PaCERS) where streamlined systematic review methodology is used to conduct rapid reviews requested by clinicians/clinical services.AimsTo describe evidence synthesis options including PaCERS for producing rapid evidence summaries on questions of direct importance to service delivery. To identify related methodological challenges.MethodsWe examine various rapid review methods and describe in full PaCERS methodology. This uses a focussed search strategy across a limited set of databases and other sources. Study selection data extraction and critical appraisal are performed independently by at least two reviewers. Results are published online using a template co-produced with users which describes key clinical messages evidence quality and summaries of included studies.ResultsWe will describe the pros and cons of conducting rapid reviews and highlight methodology development unique to PaCERS. We will discuss specific issues encountered during the review process to produce rigorous reviews in a short time frame for palliative services.ConclusionRapid reviews have tremendous methodological variation however they are an important tool for evidence-informed decision making especially when time resource constraints and health needs are an issue. Therefore using rapid reviews can be used in implementing new models of palliative care.Reference. Wales Cancer Research Centre.Palliative Care Evidence Review Service (PaCERS)2016. Available at: http://palliativecare.walescancerresearchcentre.com/palliative-care-evidence-review-service/ [Accessed: 30 May 2018]
7 Exploring healthcare professionals’ attitudes to future care planning with older adults in hospital: qualitative research co-design through multi-professional patient and carer involvement
Authors: Bielinska Anna-Maria , Archer Stephanie , Urch Catherine , Darzi Ara 
Published: August 2018

IntroductionDespite evidence that advance care planning in older hospital inpatients improves the quality of end-of-life care (Detering 2010) future care planning (FCP) with older adults remains to be normalised in hospital culture. It is therefore crucial to understand the attitudes of healthcare professionals to FCP in older patients in the hospital setting. Co-design with patients carers and healthcare professionals can generate more detailed meaningful data through better conversations.AimsTo co-design a semi-structured interview (SSI) topic guide to explore healthcare professionals’ attitudes to FCP with older adults in hospital.MethodsA multi-professional research group including a panel of patient and carer representatives co-designed an in-depth topic guide for a SSI exploring healthcare professionals’ attitudes to FCP with older adults in hospital.ResultsThe co-designed topic guide encourages participants to explore personal and system-level factors that may influence attitudes to FCP and practice in hospital amongst healthcare staff. Co-designed topics for inclusion in the SSI schedule include:Potential differences between specialist and generalist approaches to FCPThe influence of perceived hierarchy and emergency–decision making ability in professionals on FCP discussionsThe relevance to transitions of careAttitudes to FCP beyond the biomedical paradigm including perceived well–being and psychosocial aspects of careDigital FCP tools including patient–led FCP.ConclusionCo-designing qualitative research with older people and multi-disciplinary professionals may narrow translational gaps in implementing FCP by setting joint research priorities. Data generated from a co-designed study may expand understanding of hospital-based anticipatory decision-making with older adults.Reference. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ23 March 2010;340:c1345.
8 How do hospices facilitate social support?
Authors: Bradley Natasha , Lloyd-Williams Mari , Dowrick Chris 
Published: August 2018

IntroductionSocial isolation is increasing with negative consequences for both physical and mental health. People with life-limiting illness and their carers are at risk of inadequate social support and loneliness.Hospices support social wellbeing with services including traditional day care support groups befriending multi-component interventions and community activities. Existing research suggests that access to social support is highly valued. However models of support used in practice are poorly documented and outcomes difficult to ascertain. The significance of social support in palliative care is under-researched.AimTo establish an overview of hospice service models that facilitate social support for adults living in the community with life-limiting illness.MethodAn online survey was developed piloted and disseminated to adult hospices in the UK and ROI. Questions include hospice characteristics provision of services facilitating social support access issues use of patient outcomes and availability of cost data.Results107 hospices responded to the survey (>50% of eligible hospices). A diverse range of service models were identified. Preliminary results presented include: descriptive statistics of the sample categories and aims of services and salient access issues. Implications of findings for research and economic evaluation are discussed.ConclusionThis survey demonstrates hospices to be interested and active in facilitating social support. It is possible that increasingly diverse approaches used in practice may improve issues regarding access to and awareness of hospice care. More work is needed to share best practice document outcomes and consider cost-effectiveness.Reference. Bradley N, Lloyd-Williams M, Dowrick C. Effectiveness of palliative care interventions offering social support to people with life-limiting illness – A systematic review.Eur J Cancer Care2018. doi:10.1111/ecc.12837
Chain pain following cardiac surgery in a 35-year-old man
Authors: Marchandot Benjamin , Radulescu Bogdan , Morel Olivier 
Published: August 2018

Clinical introductionA 35-year-old man with multiple cardiovascular risk factors presented with a recent history of fever and acute heart failure. His initial echocardiogram showed evidence of severe aortic regurgitation due to ongoing infective endocarditis. Preoperative coronary angiography revealed no coronary abnormalities. Urgent aortic valve replacement was performed and a 29 mm St Jude mechanical valve was implanted. While blood and resected valvular tissue cultures were negative for bacteria, a PCR-based analysis revealed the presence of penicillin-sensitive Streptococcus pneumoniae. Echocardiographic follow-up study at day 3 showed excellent mechanical valve function with no persistent signs of endocarditis. Eight days after surgery, our patient presented with severe chest pain. The ECG is shown in figure 1A and coronary angiography was performed for diagnostic confirmation (figure 1B–D and online supplementary video 1).Supplementary file 1Figure 1(A) 12-lead ECG. (B, C) Selective angiogram of the left main, left anterior descending artery and circumflex artery. (D) Aortic root angiography.QuestionWhich of the following is most likely the diagnostic?Occlusion of the left anterior descending coronary arteryDissection of the left anterior descending coronary arteryValsalva aneurysm presenting as an acute coronary syndromeLeft anterior descending coronary artery spasmLeft main coronary aneurysm
Should NICE reconsider the 2016 UK guidelines on TB contact tracing? A cost-effectiveness analysis of contact investigations in London
Authors: Cavany Sean M , Vynnycky Emilia , Anderson Charlotte S , Maguire Helen , Sandmann Frank , Thomas H Lucy , White Richard G , Sumner Tom 
Published: August 2018

BackgroundIn January 2016, clinical TB guidance in the UK changed to no longer recommend screening contacts of non-pulmonary, non-laryngeal (ETB) index cases. However, no new evidence was cited for this change, and there is evidence that screening these contacts may be worthwhile. The objective of this study was to estimate the cost-effectiveness of screening contacts of adult ETB cases and adult pulmonary or laryngeal TB (PTB) cases in London, UK.MethodsWe carried out a cross-sectional analysis of data collected on TB index cases and contacts in the London TB register and an economic evaluation using a static model describing contact tracing outcomes. Incremental cost-effectiveness ratios (ICERs) were calculated using no screening as the baseline comparator. All adult TB cases (≥15 years old) in London from 2012 to 2015, and their contacts, were eligible (2465/5084 PTB and 2559/6090 ETB index cases were included).ResultsAssuming each contact with PTB infects one person/month, the ICER of screening contacts of ETB cases was £78 000/quality-adjusted life-years (QALY) (95% CI 39 000 to 140 000), and screening contacts of PTB cases was £30 000/QALY (95% CI 18 000 to 50 000). The ICER of screening contacts of ETB cases was £30 000/QALY if each contact with PTB infects 3.4 people/month. Limitations of this study include the use of self-reported symptomatic periods and lack of knowledge about onward transmission from PTB contacts.ConclusionsScreening contacts of ETB cases in London was almost certainly not cost-effective at any conventional willingness-to-pay threshold in England, supporting recent changes to National Institute for Health and Care Excellence national guidelines.