79 research outputs found

    The impact of the COVID-19 pandemic on the medical care and health-care behaviour of patients with lupus and other systemic autoimmune diseases: a mixed methods longitudinal study

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    Objective: The aim was to explore the self-reported impact of the COVID-19 pandemic on changes to care and behaviour in UK patients with systemic autoimmune rheumatic diseases, to help ensure that patient experiences are considered in future pandemic planning. Methods: This was a longitudinal mixed methods study, with a cohort completing baseline surveys in March 2020 and follow-up surveys in June 2020 (n = 111), combined with thematic analysis of the LUPUS UK forum and participant interviews (n = 28). Results: Cancellations of routine care and difficulties in accessing medical support contributed to some participants deteriorating physically, including reports of hospitalizations. The majority of participants reported that fear of COVID-19 and disruptions to their medical care had also adversely impacted their mental health. Feeling medically supported during the pandemic was correlated with multiple measures of mental health and perceptions of care, including the Warwick-Edinburgh mental well-being score (r = 0.44, P = 0.01). Five themes were identified: detrimental reduction in care; disparities in contact and communication (medical security vs abandonment sub-theme); perceived and actual endangerment; the perfect storm of reduced clinician ability to help and increased patient reticence to seek help; and identifying the patients most vulnerable to reduced medical care. Conclusion: The diversion of resources away from chronic disease care was perceived by many participants to have caused adverse outcomes. Fear about increased vulnerability to COVID-19 was high, contributing to health-care-avoidant behaviours. This study also highlights the influence of clinician accessibility and patients feeling medically supported on multiple measures of physical and mental health

    Telemedicine in rheumatology: A mixed methods study exploring acceptability, preferences and experiences among patients and clinicians

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    OBJECTIVES: The Covid-19 pandemic necessitated a rapid global transition towards telemedicine; yet much remains unknown about telemedicine's acceptability and safety in rheumatology. To help address this gap and inform practice, this study investigated rheumatology patient and clinician experiences and views of telemedicine. METHODS: Sequential mixed methodology combined analysis of surveys and in-depth interviews. Between and within-group differences in views of telemedicine were examined for patients and clinicians using t-tests. RESULTS: Surveys (Patients n = 1,340, Clinicians n = 111) and interviews (Patients n = 31, Clinicians n = 29) were completed between April 2021 and July 2021. The majority of patients were from the UK (96%) and had inflammatory arthritis (32%) or lupus (32%). Patients and clinicians rated telemedicine as worse than face-to-face consultations in almost all categories, although >60% found it more convenient. Building trusting medical relationships and assessment accuracy were great concerns (93% of clinicians and 86% of patients rated telemedicine as worse than face-to-face for assessment accuracy). Telemedicine was perceived to have increased misdiagnoses, inequalities and barriers to accessing care. Participants reported highly disparate telemedicine delivery and responsiveness from primary and secondary care. Although rheumatology clinicians highlighted the importance of a quick response to flaring patients, only 55% of patients were confident that their rheumatology department would respond within 48 hours. CONCLUSION: Findings indicate a preference for face-to-face consultations. Some negative experiences may be due to the pandemic rather than telemedicine specifically, although the risk of greater diagnostic inaccuracies using telemedicine is unlikely to be fully resolved. Training, choice, careful patient selection, and further consultation with clinicians and patients is required to increase telemedicine's acceptability and safety

    Cancer-Related Fatigue in Adolescents and Young Adults After Cancer Treatment: Persistent and Poorly Managed.

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    Cancer-related fatigue is the most prevalent and distressing symptom experienced by adolescents and young adults (AYAs). An electronic survey was undertaken to ascertain current fatigue management and perceptions of its effectiveness. Eighty-five percent of responders (68/80) experienced fatigue, and it was worse more than 1 year after cancer treatment ended, compared to <1 year (p = 0.007). Forty-one percent received no fatigue management. Although advice to exercise was the most frequent intervention, the greatest impact of fatigue was on the ability to exercise and most did not find exercise advice helpful. Early intervention is warranted, supporting AYAs to persevere with increasing activity

    Unravelling legacy: a triadic actor-network theory approach to understanding the outcomes of mega events

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    Mega events have recently attracted the attention of social scientists due to their important role for festival capitalism, urban regeneration and political propaganda. Their planning stage often produces elaborate strategies for maximising the benefits before, during and after the actual event, which has given rise to interdisciplinary studies of event legacy and leveraging. This paper aims to advance ongoing debates on the outcomes of sports mega events by bringing together the literatures on mega event legacy, leveraging and actor-network theory. Drawing on a case study on the usage of the Queen Elizabeth Olympic Park, the main legacy of the London 2012 Olympic Games, the paper develops a novel conceptual framework for researching the multi-scalar outcomes of mega events and locating respective studies within the resulting wider research agenda. The proposed concept extends Preuss’ (2007) legacy cube in two ways by visualising its five research dimensions in the legacy rings and using three rather than two sub-dimensions per ring, thereby replacing the restrictive dyads of dualistic thinking through more comprehensive but still manageable triads of triadic thought (Jöns, 2006)

    Cancer-Related Fatigue in Adolescents and Young Adults After Cancer Treatment: Persistent and Poorly Managed

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    Cancer-related fatigue is the most prevalent and distressing symptom experienced by adolescents and young adults (AYAs). An electronic survey was undertaken to ascertain current fatigue management and perceptions of its effectiveness. Eighty-five percent of responders (68/80) experienced fatigue, and it was worse more than 1 year after cancer treatment ended, compared to <1 year (p = 0.007). Forty-one percent received no fatigue management. Although advice to exercise was the most frequent intervention, the greatest impact of fatigue was on the ability to exercise and most did not find exercise advice helpful. Early intervention is warranted, supporting AYAs to persevere with increasing activity.This research was funded by Macmillan Cancer Support (grant No. 5592228)

    Empathy among undergraduate medical students: A multi-centre cross-sectional comparison of students beginning and approaching the end of their course

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    BACKGROUND: Although a core element in patient care the trajectory of empathy during undergraduate medical education remains unclear. Empathy is generally regarded as comprising an affective capacity: the ability to be sensitive to and concerned for, another and a cognitive capacity: the ability to understand and appreciate the other person's perspective. The authors investigated whether final year undergraduate students recorded lower levels of empathy than their first year counterparts, and whether male and female students differed in this respect. METHODS: Between September 2013 and June 2014 an online questionnaire survey was administered to 15 UK, and 2 international medical schools. Participating schools provided both 5-6 year standard courses and 4 year accelerated graduate entry courses. The survey incorporated the Jefferson Scale of Empathy-Student Version (JSE-S) and Davis's Interpersonal Reactivity Index (IRI), both widely used to measure medical student empathy. Participation was voluntary. Chi squared tests were used to test for differences in biographical characteristics of student groups. Multiple linear regression analyses, in which predictor variables were year of course (first/final); sex; type of course and broad socio-economic group were used to compare empathy scores. RESULTS: Five medical schools (4 in the UK, 1 in New Zealand) achieved average response rates of 55 % (n = 652) among students starting their course and 48 % (n = 487) among final year students. These schools formed the High Response Rate Group. The remaining 12 medical schools recorded lower response rates of 24.0 % and 15.2 % among first and final year students respectively. These schools formed the Lower Response Rate Group. For both male and female students in both groups of schools no significant differences in any empathy scores were found between students starting and approaching the end of their course. Gender was found to significantly predict empathy scores, with females scoring higher than males. CONCLUSIONS: Participant male and female medical students approaching the end of their undergraduate education, did not record lower levels of empathy, compared to those at the beginning of their course. Questions remain concerning the trajectory of empathy after qualification and how best to support it through the pressures of starting out in medical practice

    Customising virtual globe tours to enhance community awareness of local landscape benefits

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    Our wellbeing depends upon the services provided by ecosystems and their components. Despite recent advances in academic understanding of ecosystem services, and consideration in UK national environmental policy, a greater awareness is needed at community and individual levels. Dynamic features of virtual globe applications have considerable potential for helping convey the multi-dimensional context of ecosystem services and promoting general awareness. In a case study targeting residents in a small urban fringe river catchment in Norfolk, UK, representatives from local authorities and responsible agencies collaborated with scientists to produce extensive customisation of virtual globes in this context. By implementing a virtual flight over the catchment, different views and scales are traversed to set the context for landscape features and ecosystem services. Characteristic sites, e.g. supplying cultural services, are displayed and relationships with the natural environment are explained using linked on-screen text. Implementation is cost-effective and described for practitioners in ecosystem and landscape management, who may be inexperienced in landscape visualisation. Supplied as three pre-packaged virtual tours, products are made available for download and are publicised at a variety of engagement events, including teaching events with schoolchildren. The tours have attracted public interest and generated positive feedback about improving knowledge of local natural assets. Schoolchildren show confidence with the interface, but supplementary problem-based activities can improve learning opportunities. The capacity of virtual globes to support more participatory involvement of the public in local ecosystem management may increase in the future, but such visualisations can already help promote community awareness of local landscape benefits

    Using geographically weighted regression to explore neighborhood-level predictors of domestic abuse in the UK

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    Reducing domestic abuse has become a priority for both local and national governments in the UK, with its substantial human, social, and economic costs. It is an interdisciplinary issue, but to date there has been no research in the UK that has focused on neighborhood-level predictors of domestic abuse and their variation across space. This article uses geographically weighted regression to model the predictors of police-reported domestic abuse in Essex. Readily available structural and cultural variables were found to predict the domestic abuse rate and the repeat victimization rate at the lower super output area level and the model coefficients were all found to be non-stationary, indicating varying relationships across space. This research not only has important implications for victims' well being, but also enables policy makers to gain a better understanding of the geography of victimization, allowing targeted policy interventions and efficiently allocated resources
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