Experiences and perceptions of the role of palliative and end of life care in heart failure: A modified grounded theory study.

Heart failure (HF) is a progressive, life-limiting illness affecting around 750,000 people in the UK, with a mortality rate of 50% within four years. A large body of qualitative research demonstrates variable quality of HF care at the end of life, difficulties in identifying the dying phase, poor communication, and a failure to achieve a ‘good’ death. However little is known about the assessment of the need for palliative care, the recognition of the last days of life, or the extent to which these considerations are communicated to patients and carers and to the wider multi-disciplinary team. Greater understanding of the transition points from HF diagnosis to death may inform future service planning, including the most appropriate model of palliative care to apply to this patient group. Thus, the aim of this study was to explore experiences of giving or receiving a prognosis and managing the transition point from diagnosis to palliative and end of life care for those with HF. The study involved two stages. The first was a systematic review of the uptake of the Liverpool Care Pathway (LCP) in order to assess current utilisation of end of life care pathways. The second utilised a modified constructivist grounded theory methodology to assess experiences of giving and receiving a prognosis, combining semi-structured interviews with clinicians, observations of clinic and home visit appointments, followed by a series of longitudinal semi-structured interviews with thirteen patients with HF and nine carers. The systematic review demonstrated that the LCP was utilised for less than half of all dying patients. Interviews with clinicians revealed frustration and uncertainty about the contested nature of HF diagnosis and prognosis. Most clinicians rejected the concept of HF as a terminal illness in their everyday practice, and expressed uncertainty about roles and responsibilities for end of life care, alongside a reluctance to actively plan for end of life for individual patients. In contrast, some clinicians demonstrated the ability to deliver problem-based, individualised care but sometimes felt constrained by the perceived lack of multi-disciplinary advanced care planning. Most patients and carers talked about death and dying in general terms but felt that HF specific end of life considerations did not apply to them. They placed much more importance on understanding the emergence of their symptoms and negotiating everyday restrictions. Most patients had not made any decisions about advance care directives, and reported no prognostic discussions with clinicians. Overall, the majority of participants rejected notions of HF as a terminal illness in favour of day to day management and maintenance, despite obvious deteriorations in disease stage and needs over time. This is the first known study exploring the experiences of prognostic communication at all stages of the HF disease trajectory. Findings raise questions regarding the pragmatic utility of the concept of HF as a terminal illness and have implications for future HF care pathway development. A key recommendation emerging from this study is that notions of prognosis should be ultimately rejected for HF care, and be replaced with a problem-based approach to care which combines elements of active and palliative care from diagnosis onwards, alongside regular assessments of communication preferences

A systematic review and taxonomy of tools for evaluating evidence-based medicine teaching in medical education

Background: The importance of teaching the skills and practice of evidence-based medicine (EBM) for medical professionals has steadily grown in recent years. Alongside this growth is a need to evaluate the effectiveness of EBM curriculum as assessed by competency in the five ‘A’s’: asking, acquiring, appraising, applying and assessing (impact and performance). EBM educators in medical education will benefit from a compendium of existing assessment tools for assessing EBM competencies in their settings. The purpose of this review is to provide a systematic review and taxonomy of validated tools that evaluate EBM teaching in medical education. Methods: We searched MEDLINE, EMBASE, Cochrane library, Educational Resources Information Centre (ERIC), Best Evidence Medical Education (BEME) databases and references of retrieved articles published between January 2005 and March 2019. We have presented the identified tools along with their psychometric properties including validity, reliability and relevance to the five domains of EBM practice and dimensions of EBM learning. We also assessed the quality of the tools to identify high quality tools as those supported by established interrater reliability (if applicable), objective (non-self-reported) outcome measures and achieved ≥ 3 types of established validity evidence. We have reported our study in accordance with the PRISMA guidelines. Results: We identified 1719 potentially relevant articles of which 63 full text articles were assessed for eligibility against inclusion and exclusion criteria. Twelve articles each with a unique and newly identified tool were included in the final analysis. Of the twelve tools, all of them assessed the third step of EBM practice (appraise) and four assessed just that one step. None of the twelve tools assessed the last step of EBM practice (assess). Of the seven domains of EBM learning, ten tools assessed knowledge gain, nine assessed skills and-one assessed attitude. None addressed reaction to EBM teaching, self-efficacy, behaviours or patient benefit. Of the twelve tools identified, six were high quality. We have also provided a taxonomy of tools using the CREATE framework, for EBM teachers in medical education. Conclusions: Six tools of reasonable validity are available for evaluating most steps of EBM and some domains of EBM learning. Further development and validation of tools that evaluate all the steps in EBM and all educational outcome domains are needed

Appetite, food intake, and gut hormone responses to glycomacropeptide protein ingestion in older adults: : A feasibility, acceptability, and pilot study

We would like express huge gratitude to our participants for taking part, and for making data collection such an enjoyable experience for the research team. We would like to thank our students Vicky Catterall, Beth Minion, Joe Ashworth, Monty Hardcastle, and Anna Brooks for supporting data collection. We also thank Agropur Ingredients (Eden Prairie, MN, USA) for providing GMP.Peer reviewe

Using twins to better understand sibling relationships

We compared the nature of the sibling relationship in dyads of varying genetic relatedness, employing a behavioural genetic design to estimate the contribution that genes and the environment have on this familial bond. Two samples were used—the Sisters and Brothers Study consisted of 173 families with two target non-twin children (mean ages = 7.42 and 5.22 years respectively); and the Twins, Family and Behaviour study included 234 families with two target twin children (mean age = 4.70 years). Mothers and fathers reported on their children’s relationship with each other, via a postal questionnaire (the Sisters and Brothers Study) or a telephone interview (the Twins, Family and Behaviour study). Contrary to expectations, no mean level differences emerged when monozygotic twin pairs, dizygotic twin pairs, and non-twin pairs were compared on their sibling relationship quality. Behavioural genetic analyses also revealed that the sibling bond was modestly to moderately influenced by the genetic propensities of the children within the dyad, and moderately to substantially influenced by the shared environment common to both siblings. In addition, for sibling negativity, we found evidence of twin-specific environmental influence—dizygotic twins showed more reciprocity than did non-twins. Our findings have repercussions for the broader application of results from future twin-based investigations

Invariants for the Smale space associated to an expanding endomorphism of a flat manifold

We study invariants associated to Smale spaces obtained from an expanding endomorphism on a (closed connected Riemannian) flat manifold. Specifically, the relevant invariants are the $K$-theory of the associated $C^*$-algebras and Putnam's homology theory for Smale spaces. The latter is isomorphic to the groupoid homology of the groupoids used to construct the $C^*$-algebras.Comment: 21 page

Implementation of the National Early Warning Score in UK care homes:a qualitative evaluation

BACKGROUND: The National Early Warning Score (NEWS) is a tool for identifying and responding to acute illness. When used in care homes, staff measure residents' vital signs and record them on a tablet computer, which calculates a NEWS to share with health services. This article outlines an evaluation of NEWS implementation in care homes across one clinical commissioning group area in northern England. AIM: To identify challenges to implementation of NEWS in care homes. DESIGN AND SETTING: Qualitative analysis of interviews conducted with 15 staff members from six care homes, five health professionals, and one clinical commissioning group employee. METHOD: Interviews were intended to capture people's attitudes and experiences of using the intervention. Following an inductive thematic analysis, data were considered deductively against normalisation process theory constructs to identify the challenges and successes of implementing NEWS in care homes. RESULTS: Care home staff and other stakeholders acknowledged that NEWS could enhance the response to acute illness, improve communication with the NHS, and increase the confidence of care home staff. However, the implementation did not account for the complexity of either the intervention or the care home setting. Challenges to engagement included competing priorities, insufficient training, and shortcomings in communication. CONCLUSION: This evaluation highlights the need to involve care home staff and the primary care services that support them when developing and implementing interventions in care homes. The appropriateness and value of NEWS in non-acute settings requires ongoing monitoring

Identity construction in the very old : A qualitative narrative study

People are living longer internationally, with a growing number experiencing very old age (≥95 years). Physical, psychological and social changes can challenge one’s sense of self and disrupt existing identities. However, experiences of the very old in society are seldom researched and how they construct identity and negotiate a sense of self is little understood. Our study focuses on participants aged >95 years to understand how identity is conceptualised to negotiate a continued place in society. Qualitative interviews with 23 people were thematically analysed, underpinned by Positioning Theory. Five themes were generated: A contented life; reframing independence; familial positioning; appearance and physical wellbeing; reframing ill health. Participants saw themselves as largely content and, despite their world becoming smaller, found pleasure in small routines. Perceptions of self were reframed to maintain autonomy within narrow parameters. Past relationships and experiences/events were drawn on to make sense of ongoing ways of living. There were tensions around feelings of loss of autonomy and independence, with some valuing these over issues such as safety. This sometimes conflicted with views of others and small acts of resistance and subversion were acted out to maintain some sense of control. However, participants minimised progressive ill health. Findings provide insight into how the very old may utilise identity to negotiate, acquiesce, resist and challenge the world around them

Organising general practice for care homes: a multi-method study

Background: General practice provides first-line National Health Service care for around 400,000 care home residents. Good primary care can enhance residents' health and well-being and optimise use of hospital services. Objectives: This study aimed to explore the relationships between organisation of general practice and the perspectives and experiences of residents, general practice and care home staff, outcomes and costs. Design: Survey of general practices (2018), qualitative study (2019), analysis of primary care data (2019-21). Policy context: National Health Service England Vanguard funded innovation in services for care homes in five areas (2015-8); Enhanced Health in Care Homes introduces standardised care home healthcare processes in England (2020-4). Setting: England: national survey; qualitative work in three areas (two Vanguards); analysis of national primary care data across early implementation of Enhanced Health in Care Homes and the COVID-19 pandemic. Participants: One hundred and fifty general practice survey respondents; 101 interviewees (general practitioners, practice managers, receptionists, care home managers, nurses, senior carers, residents, relatives, commissioners) in three areas; 103,732 care home residents ≥ 75 years, registered with participating practices in Clinical Research Datalink Aurum 2019-21. Results: Qualitative analysis identified three themes concerned with general practitioner services to care homes: relational processes, communication and organisation. Continuity of care, sensitivity to the skills of care home staff and routines of the home, along with a willingness to dedicate time to patients, are all crucial. Different structures (e.g. scheduled visits) provide opportunities to develop effective, efficient care, but flounder without established, trusting relationships. The way in which new initiatives are implemented is crucial to acceptance and ultimate success: telemedicine was an example that generated efficiencies for the National Health Service, but could be a burden to care homes, resented by staff and perceived as a barrier to overcome. One hundred and fifty practices responded to our survey, a majority staffed by ≤ 5 general practitioners. Larger practices were more likely to have a nominated general practitioner for care homes and make weekly scheduled visits. Analysis of primary care data found that in practices with a higher number of care home residents, patients had more contacts with primary care and fewer urgent referrals. Between 2019 and 2021, total contacts and estimated costs increased, and urgent referrals and polypharmacy fell.Limitations: Sparse evidence of systematic change in Vanguard areas limited our conclusions about specific initiatives. Implementation of national policy during the COVID-19 pandemic complicates data interpretation. Conclusions: Larger practices or those with higher numbers of care home residents were more likely to adopt ways of working that are associated with higher-quality care. However, trusting relationships between care homes and a motivated, adequately resourced primary care workforce may be more important than models of care, in enhancing primary care for care homes. General practices and care homes find creative ways around initiatives that are not perceived to offer any benefits, emphasising the need for local flexibility when implementing national initiatives. Future work: Future work could address how best to promote ways of working that prioritise trusting relationships; the absence of care pathways specific to care home patients, and the impact of Enhanced Health in Care Homes on system-wide costs. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 14/196/05) and is published in full in Health and Social Care Delivery Research; Vol. 13, No. 11. See the NIHR Funding and Awards website for further award information

Experiences of a National Early Warning Score (NEWS) intervention in care homes during the COVID-19 pandemic: a qualitative interview study

Background: The COVID-19 pandemic has taken a heavy toll on the care home sector, with residents accounting for up to half of all deaths in Europe. The response to acute illness in care homes plays a particularly important role in the care of residents during a pandemic. Digital recording of a National Early Warning Score (NEWS), which involves the measurement of physical observations, started in care homes in one area of England in 2016. Implementation of a NEWS intervention (including equipment, training and support) was accelerated early in the pandemic, despite limited evidence for its use in the care home setting. Objectives: To understand how a NEWS intervention has been used in care homes in one area of North-East England during the COVID-19 pandemic, and how it has influenced resident care, from the perspective of stakeholders involved in care delivery and commissioning. Methods: A qualitative interview study with care home (n=10) and National Health Service (n=7) staff. Data were analysed using thematic analysis. Results: Use of the NEWS intervention in care homes in this area accelerated during the COVID-19 pandemic. Stakeholders felt that NEWS, and its associated education and support package, improved the response of care homes and healthcare professionals to deterioration in residents’ health during the pandemic. Healthcare professionals valued the ability to remotely monitor resident observations, which facilitated triage and treatment decisions. Care home staff felt empowered by NEWS, providing a common clinical language to communicate concerns with external services, acting as an adjunct to staff intuition of resident deterioration. Conclusions: The NEWS intervention formed an important part of the care home response to COVID-19 in the study area. Positive staff perceptions now need to be supplemented with data on the impact on resident health and well-being, workload, and service utilisation, during the pandemic and beyond

Relationship between molecular pathogen detection and clinical disease in febrile children across Europe:a multicentre, prospective observational study

Background: The PERFORM study aimed to understand causes of febrile childhood illness by comparing molecular pathogen detection with current clinical practice. Methods: Febrile children and controls were recruited on presentation to hospital in 9 European countries 2016–2020. Each child was assigned a standardized diagnostic category based on retrospective review of local clinical and microbiological data. Subsequently, centralised molecular tests (CMTs) for 19 respiratory and 27 blood pathogens were performed. Findings: Of 4611 febrile children, 643 (14%) were classified as definite bacterial infection (DB), 491 (11%) as definite viral infection (DV), and 3477 (75%) had uncertain aetiology. 1061 controls without infection were recruited. CMTs detected blood bacteria more frequently in DB than DV cases for N. meningitidis (OR: 3.37, 95% CI: 1.92–5.99), S. pneumoniae (OR: 3.89, 95% CI: 2.07–7.59), Group A streptococcus (OR 2.73, 95% CI 1.13–6.09) and E. coli (OR 2.7, 95% CI 1.02–6.71). Respiratory viruses were more common in febrile children than controls, but only influenza A (OR 0.24, 95% CI 0.11–0.46), influenza B (OR 0.12, 95% CI 0.02–0.37) and RSV (OR 0.16, 95% CI: 0.06–0.36) were less common in DB than DV cases. Of 16 blood viruses, enterovirus (OR 0.43, 95% CI 0.23–0.72) and EBV (OR 0.71, 95% CI 0.56–0.90) were detected less often in DB than DV cases. Combined local diagnostics and CMTs respectively detected blood viruses and respiratory viruses in 360 (56%) and 161 (25%) of DB cases, and virus detection ruled-out bacterial infection poorly, with predictive values of 0.64 and 0.68 respectively. Interpretation: Most febrile children cannot be conclusively defined as having bacterial or viral infection when molecular tests supplement conventional approaches. Viruses are detected in most patients with bacterial infections, and the clinical value of individual pathogen detection in determining treatment is low. New approaches are needed to help determine which febrile children require antibiotics. Funding: EU Horizon 2020 grant 668303.</p