45 research outputs found

    Engagement of specialized palliative care services with the general public : a population-level survey in three European countries

    Get PDF
    Background: There is growing recognition of a need for community capacity development around serious illness, dying and loss, complementary to strategies focussing on health services. Hitherto, little is known about how and to what extent palliative care services in different countries are adopting these ideas in their practices. Aim: To examine views towards and actual involvement in community engagement activities as reported by specialized palliative care services in Belgium, Sweden and the UK. Design, setting, participants: Cross-sectional survey among all eligible specialized palliative care services in Flanders (Belgium) ( n = 50), Sweden ( n = 129) and the UK ( n = 245). Representatives of these services were invited to complete an online questionnaire about their actual activities with the general public and their attitudes regarding such activities. Results: Response rates were 90% (Belgium), 71% (Sweden) and 49% (UK). UK services more often reported engaging with the general public to develop knowledge and skills through a range of activities (80%–90%) compared to Belgian (31%–71%) and Swedish services (19%–38%). Based on a combination of engagement activities 74% of UK services could be labelled as extending their focus beyond the clinical mandate compared to 16% in Belgium and 7% in Sweden. Services’ dependency on charitable donations was strongly associated with increased engagement with the general public. Conclusion: An expansion of the mandate of specialized palliative care services beyond a traditional clinically-oriented focus towards one inclusive of community capacity building around serious illness, dying and loss is occurring in different countries, albeit to different degrees and with different intensities

    Epigenetic analysis of Paget's disease of bone identifies differentially methylated loci that predict disease status

    Get PDF
    Paget’s disease of bone (PDB) is characterized by focal increases in disorganized bone remodeling. This study aims to characterize PDB-associated changes in DNA methylation profiles in patients’ blood. Meta-analysis of data from the discovery and cross-validation set, each comprising 116 PDB cases and 130 controls, revealed significant differences in DNA methylation at 14 CpG sites, 4 CpG islands, and 6 gene-body regions. These loci, including two characterized as functional through expression quantitative trait-methylation analysis, were associated with functions related to osteoclast differentiation, mechanical loading, immune function, and viral infection. A multivariate classifier based on discovery samples was found to discriminate PDB cases and controls from the cross-validation with a sensitivity of 0.84, specificity of 0.81, and an area under curve of 92.8%. In conclusion, this study has shown for the first time that epigenetic factors contribute to the pathogenesis of PDB and may offer diagnostic markers for prediction of the disease

    DNA methylation in childhood asthma : an epigenome-wide meta-analysis

    Get PDF
    Background DNA methylation profiles associated with childhood asthma might provide novel insights into disease pathogenesis. We did an epigenome-wide association study to assess methylation profiles associated with childhood asthma. Methods We did a large-scale epigenome-wide association study (EWAS) within the Mechanisms of the Development of ALLergy (MeDALL) project. We examined epigenome-wide methylation using Illumina Infinium Human Methylation450 BeadChips (450K) in whole blood in 207 children with asthma and 610 controls at age 4-5 years, and 185 children with asthma and 546 controls at age 8 years using a cross-sectional case-control design. After identification of differentially methylated CpG sites in the discovery analysis, we did a validation study in children (4-16 years; 247 cases and 2949 controls) from six additional European cohorts and meta-analysed the results. We next investigated whether replicated CpG sites in cord blood predict later asthma in 1316 children. We subsequently investigated cell-type-specific methylation of the identified CpG sites in eosinophils and respiratory epithelial cells and their related gene-expression signatures. We studied cell-type specificity of the asthma association of the replicated CpG sites in 455 respiratory epithelial cell samples, collected by nasal brushing of 16-year-old children as well as in DNA isolated from blood eosinophils (16 with asthma, eight controls [age 2-56 years]) and compared this with whole-blood DNA samples of 74 individuals with asthma and 93 controls (age 1-79 years). Whole-blood transcriptional profiles associated with replicated CpG sites were annotated using RNA-seq data of subsets of peripheral blood mononuclear cells sorted by fluorescence-activated cell sorting. Findings 27 methylated CpG sites were identified in the discovery analysis. 14 of these CpG sites were replicated and passed genome-wide significance (p Interpretation Reduced whole-blood DNA methylation at 14 CpG sites acquired after birth was strongly associated with childhood asthma. These CpG sites and their associated transcriptional profiles indicate activation of eosinophils and cytotoxic T cells in childhood asthma. Our findings merit further investigations of the role of epigenetics in a clinical context.Peer reviewe

    Intrinsic transcriptional heterogeneity in B cells controls early class switching to IgE.

    Get PDF
    Noncoding transcripts originating upstream of the immunoglobulin constant region (I transcripts) are required to direct activation-induced deaminase to initiate class switching in B cells. Differential regulation of Iε and Iγ1 transcription in response to interleukin 4 (IL-4), hence class switching to IgE and IgG1, is not fully understood. In this study, we combine novel mouse reporters and single-cell RNA sequencing to reveal the heterogeneity in IL-4-induced I transcription. We identify an early population of cells expressing Iε but not Iγ1 and demonstrate that early Iε transcription leads to switching to IgE and occurs at lower activation levels than Iγ1. Our results reveal how probabilistic transcription with a lower activation threshold for Iε directs the early choice of IgE versus IgG1, a key physiological response against parasitic infestations and a mediator of allergy and asthma

    Burnout in nursing: a theoretical review

    No full text
    Background: workforce studies often identify burnout as a nursing ‘outcome’. Yet burnout itself - what constitutes it, what factors contribute to its development, and what the wider consequences are for individuals, organisations or their patients – is rarely made explicit. We aimed to provide a comprehensive summary of research that examines theorised relationships between burnout and other variables, in order to determine what is known (and not known) about the causes and consequences of burnout in nursing, and how this relates to theories of burnout. Methods: we searched MEDLINE, CINAHL and PsycINFO. We included quantitative primary empirical studies (published in English) which examined associations between burnout and work-related factors in the nursing workforce. Results: 91 papers were identified. The majority (n=87) were cross-sectional studies; 39 studies used all three subscales of the Maslach Burnout Inventory (MBI) scale to measure burnout. As hypothesised by Maslach we identified high workload, value incongruence, low control over the job, low decision latitude, poor social climate/social support, and low rewards as predictors of burnout. Maslach suggested that turnover, sickness absence and general health were effects of burnout; however we identified relationships only with general health and sickness absence. Other factors that were classified as predictors of burnout in the nursing literature where low/inadequate nurse staffing levels, ≥12-hour shifts, and low schedule flexibility, time pressure, high job & psychological demands, low task variety, role conflict, low autonomy, negative nurse-physician relationship, poor supervisor/leader support, poor leadership, negative team relationship, job insecurity. Among the outcomes of burnout we found: reduced job performance, poor quality of care, poor patient safety, adverse events, patient negative experience, medication errors, infections, patient falls, and intention to leave. Conclusions: the patterns identified by these studies consistently show that adverse job characteristics - high workload, low staffing levels, long shifts, low control are associated with burnout in nursing. The potential consequences for staff and patients are severe. The literature on burnout in nursing partly supports Maslach’s theory, but some areas are insufficiently tested, in particular the association between burnout and turnover, and relationships were found for some MBI dimensions only

    Patient lead users experience of the COVID-19 pandemic : a qualitative interview study

    No full text
    Objectives Patient lead users can be defined as patients or relatives who use their knowledge and experience to improve their own or a relative’s care situation and/or the healthcare system, and who are active beyond what is usually expected. The objective of this study is to explore patient lead users’ experiences and engagement during the early COVID-19 pandemic. Design Qualitative in-depth interviews with a cross-sectional time horizon. Setting The early COVID-19 pandemic in Sweden, from 1 June through 14 September, 2020. Participants A total of 10 patient lead users were recruited from the Swedish patient lead users (spetspatient) network. All participants were living with different long-term conditions and matched the definition of being patient lead users. Results We found that during the early pandemic, patient lead users experienced that they no longer knew how to best manage their own health and care situations. On an individual level, they described an initial lack of knowledge, new routines, including a change in their health and an experience of people without a disease being in the same situation as them, for a while. On a systemic level, they described a fear of imminent unmet-care backlogs and decreased opportunities for sharing patient perspectives in care organisation, but also described increased networking. Conclusions Patient lead users can be seen as an emerging community of practice, and as such could be a valuable resource as a complementary communication channel for an improved health system. The health systems were not able to fully acknowledge and engage with the resource of patient lead users during the pandemic
    corecore