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Evaluating the correspondence between the EQ-5D-5L and disease severity and quality of life in adults and adolescents with cystic fibrosis
Get PDFBackground
The EQ-5D is the recommended measure to capture health-related quality of life (HRQoL), recognised for use in health technology appraisal bodies. In order to assess whether it is appropriate to use the EQ-5D for making decisions about the cost-utility of treatments in cystic fibrosis (CF), this study assesses the performance of the EQ-5D-5L in adults and adolescents with CF.
Method
This was a cross-sectional observational survey study of patients with CF attending a single large CF centre. Participants were asked to complete a survey that included two HRQoL measures; the EQ-5D-5L and CF Quality of Life (CFQoL) questionnaires.
Results
Among 213 participants, the median EQ-5D-5L index score was 0.76 (IQR 0.66 – 0.84) and the visual analogue (EQ-VAS) was 70 (60 – 80). Both the EQ-5D index and EQ-VAS discriminated between disease severity based on lung function (p = 0.01 and p < 0.01, respectively) and pulmonary exacerbation (p = 0.02 and p < 0.01, respectively); however, EQ-VAS differentiated between more lung function severity groups compared to EQ-5D index. The EQ-5D-5L demonstrated convergent validity as its dimensions, index score, and EQ-VAS had significant correlations with most CFQoL domains. Though, EQ-VAS significantly predicted more domains of CFQoL (4 domains) compared to EQ-5D index (only 1 domain).
Conclusion
The generic EQ-5D-5L performed adequately in discriminating between CF disease severity, and its index score and EQ-VAS had moderate correlations with CFQoL. However, using a complementary condition-specific measure alongside the EQ-5D-5L can provide better insight of HRQoL in CF and benefit the process of cost-utility analysis
Towards Trustworthy Experimental Replication in SLICES-RI
Get PDFReplication is crucial for maintaining the credibility and integrity of scientific research and is one of Europe's key enablers for Open Science. Several challenges must be addressed to facilitate replication, including applying robust methodologies, holistic data sharing, and detailed data lineage and provenance to allow researchers to leverage insights and findings from prior investigations and introduce novel perspectives or solutions in their field. Research Infrastructures are an important catalyst towards addressing the replication “crisis” by enforcing data sharing by design/default, with appropriate protocols and procedures that provide visibility and transparency to the whole data journey, and compliance with national and international regulations. SLICES Research Infrastructure will construct one of Europe's most advanced scientific platforms in the field of digital sciences, promoting scientific research replication through sophisticated policies and services. SLICES-RI transcends traditional data sharing of common digital objects, such as datasets, services and tools, by introducing replication of complex digital objects, such as experimental workflows, which orchestrate advanced tools and services to perform sophisticated experiments in smart networks and systems. This paper presents the preliminary design of the SLICES-RI replication framework, providing insight into its internal structures and mechanisms, and demonstrating how experimental workflows can be replicated. The proposed SLICES Trustworthy Experimental Replication Framework (STEF) provides visibility into the experiment workflow and the underlying data journey, and demonstrates the potential integration of sophisticated indicators, such as explainability, interpretability, and safety, contributing to trustworthy experimentation
The Descent: Geographical Information System Mapping as a Method of Quantification in Osteoarchaeological and Taphonomic Analysis of Early Neolithic Human Remains from Cave Burials in North-Western England
Get PDFCaves have long been recognised as an important aspect of Neolithic burial practice and our understanding around such practices has been supported by taphonomic analysis and re-analysis of original excavations. This research aims to assess whether Geographic Information Systems (GIS) can be used as a tool for exploring taphonomy, currently underutilised in human cave assemblages. Through our understanding of taphonomic patterns at an element, body and stratigraphic level, site specific inferences of burial practices can be reconstructed and patterns across cave burials assessed.
Two main sites were selected for analysis, Cave Ha 3 (Yorkshire) and Heaning Wood (Cumbria). Bone fragments were assessed for taphonomic modifications and mapped onto templates of bones in QGIS. This has created visual and quantitative data of changes at a body level. Spatial archive data was examined and taphonomic modifications were geographically referenced in QGIS. This provided information of its distribution, allowing for analysis of the movement of skeletal elements and possible locations of geological processes within the cave system.
Analysis of Cave Ha 3 has highlighted possible burial locations and position of bodies, adding support to earlier narratives. Spatial data for Heaning Wood was less detailed, however analysis has indicated burial sequences. Eight of the nine individuals recovered from Heaning Wood have been radiocarbon dated, showing distinct episodes of burial spanning from the Early Mesolithic through to the Early Bronze Age. The research provides the most comprehensive report on Heaning Wood to date, with radiocarbon dates challenging previous discourse around the absence of Early Neolithic cave burials along the south coast of Cumbria. The Early Mesolithic date also provides support for the reoccupation of Britain occurring in the North West, simultaneous with occupation in the South.
Results suggest that QGIS can provide excellent visualisation of taphonomic modifications, regardless of whether a site has spatial legacy data. It has allowed analysis of intra and inter-body taphonomic changes. For sites that do have context data, QGIS provides a more traditional use, mapping where these modifications have occurred within the cave. This has implications for understanding original deposition, geological processes and the relationship between the buried bodies and cave
The Enduring Significance of the Minimal Phenomenological Self: Disclosure & Subjectivity
Get PDFCertain recent influential commentarial trends - predominantly philosophical, but adaptive to the findings of current neuroscience and theoretical psychology - seek to extrapolate a coherent, foundational account of the first personal nature of experience as constitutive of “self-hood” in a so called “minimal” sense. Such research professes a strict adherence to a 1 very specific interpretation of key classic phenomenological sources. What is questionable, we shall suggest, is the controvertible need to identify reflexivity, envisaged in largely neo-Sartrean terms, as the apparent locus for so-called “minimal” self-hood. Reflexivity so envisaged - as a first-personal, non-positing, self-givenness and qualitative “mineness” - is claimed to represent a “dative of manifestation,” a minimal experiential structure that is argued to underwrite other derivative accounts of “self-hood” across the disciplines. Principally by means of re-examining certain source texts, our enquiry aims to critically engage and challenge this thesis. To this end we propose to thematise and interrogate the direct equation Heidegger makes in Being & Time (and elsewhere) between Dasein (human being) and disclosedness: “To say that [Dasein] is ‘illuminated’ means that as Being-in-the-world [Dasein] is cleared in itself…in such a way that it is itself the clearing….Dasein is its disclosedness.” Building on the phenomenological research of Husserl, 2 Heidegger positions his account of the subjective field as essentially disclosive in terms of a retrieval and restoration (as he sees it) of the classical conception of truth as alêtheia, or “unconcealment.” We shall thereafter consider the extent to which an analogous interpretation of disclosedness may also be found in the phenomenological work of Sartre. Despite their conspicuously divergent terminologies and agendas, we aim to demonstrate that Sartre’s conception of the subjective field, or consciousness, as a fundamentally disclosive “decompression of being” converges in significant and illuminating ways with Heidegger’s account of Dasein as a disclosiveness “in-the-world.” We argue that selfhood in its most originary, “minimal” sense is thus most convincingly conceived in terms of a recurrent, historical “event” of unconcealment and “self-constitution” - always in and through the achievement of an intelligible and meaningful world. As we shall see, both thinkers reject a substantivized conception of the self (as a bearer of predicates) - including the idea of a minimally substantivized “dative of manifestation” - in favour of a view of the self as the process or “event” of being disclosed. Precisely in these terms, Heidegger and Sartre may both be said to envisage the subjective field as a foundational “event,” or “space,” of disclosedness itself
DOES LEADERSHIP MATTER FOR EMPLOYEE ENGAGEMENT? EXPLORATORY STUDY OF LEADERSHIP PRACTICES WITHIN THE QATAR POLICE DEPARTMENT
Get PDFGiven the importance of employee engagement in workplace performance, there is ongoing interest among organisational leaders and scholars in the topics of leadership and employee engagement (Kahn, 1990; MacLeod & Clarke, 2009; Anitha, 2014; Popli & Rizvi, 2016; Saks, 2017). The aim of this study is to explore the role and relative importance of leadership in employee engagement or disengagement in the Qatar Rescue Police and to elucidate the drivers of engagement in an Islamic cultural context as well as the practices that can be implemented to improve employee engagement among employees. The research is based on a qualitative approach, employing interviews and observations in which leaders and subordinates’ views are expressed, and their actions are observed. The perspectives of each leader and subordinate were examined and cross-referenced against observations and existing literature, indicating highly variable approaches to leadership and a significant degree of consensus regarding the effects of these varying leadership practices on engagement among subordinates. A unique cultural and religious perspective on the relationship between leaders and subordinates in Qatar was revealed. The study revealed a need for greater sensitivity to context in the approach to leadership as well as a dearth of interaction between administrative leadership and operational personnel. The Islamic view of business hierarchies as being akin to family relationships and the concepts of “brotherhood” and “fatherhood” in leadersubordinate
interactions were of particular interest as drivers of engagement. In addition, various organisational limitations were identified, particularly with regard to staffing and financial constraints, highlighting the limitations of operational leadership in the Qatar Rescue Police in fostering engagement through material rewards and employee benefits. At
operational level, subordinates and leaders suggested specific non-monetary rewards and practices which could be used to promote engagement despite these organisational
constraints. However, a pressing need for improved communication between organisational leadership and operational personnel was identified. The study indicates evidence-based interventions that may be applied to improve leadership practice and employee engagement among subordinates working as first responders in the Qatar Rescue Police and examines attitudes towards accepted drivers of engagement including autonomy, training, supportiveness, even-handedness and personal recognition as suggested by authors such as Mani (2011), Anitha (2014), MacLeod & Clarke (2009) and Sundaray (2011). This research highlights the need to view accepted knowledge through the lens of organisational and cultural context as influenced by Leadership As Practice (LAP) approach which provides stronger emphasis on context where leadership practices are studied and investigated. Although its findings and recommendations are specific to the Qatar Rescue Police, its conclusions may have relevance to those seeking to understand the role of leadership practices in employee engagement in both private and governmental organisations in the Islamic world
AGN STORM 2. VIII. Investigating the Narrow Absorption Lines in Mrk 817 Using HST-COS Observations*
Get PDFWe observed the Seyfert 1 galaxy Mrk 817 during an intensive multiwavelength reverberation mapping campaign for 16 months. Here, we examine the behavior of narrow UV absorption lines seen in the Hubble Space Telescope/Cosmic Origins Spectrograph spectra, both during the campaign and in other epochs extending over 14 yr. We conclude that, while the narrow absorption outflow system (at −3750 km s−1 with FWHM = 177 km s−1) responds to the variations of the UV continuum as modified by the X-ray obscurer, its total column density (log NH = 19.5 - + 0.13 0.61 cm−2 ) did not change across all epochs. The adjusted ionization parameter (scaled with respect to the variations in the hydrogen-ionizing continuum flux) is log UH = −1.0 - + 0.3 0.1. The outflow is located at a distance smaller than 38 pc from the central source, which implies a hydrogen density of nH > 3000 cm−3. The absorption outflow system only covers the continuum emission source and not the broad emission line region, which suggests that its transverse size is small (< 1016 cm), with potential cloud geometries ranging from spherical to elongated along the line of sight
Low-Mass Companions Orbiting δ Scuti Stars
Get PDFA substantial fraction of exoplanets exist around M-type stars, but few systems have host stars hotter than the Sun and even fewer orbit hot stars that pulsate.
The discovery of planets around pulsating stars provides a laboratory that offers the opportunity for the most precise studies of exoplanet systems. To search for new systems, an exclusively UK-based exoplanet and variable star survey using UCLan’s Moses Holden Telescope (MHT) was established — MOSES: MHT Optical Star and Exoplanet Survey. The MOSES field was formed of a 4 × 4 tiled array covering a 7-square degree region of the sky observing over 65,000 stars, 60-s per exposure strategy in the Johnson V -band. Of all stars observed during the initial 10-month MOSES campaign, just 13 were flagged to be of a variable nature with a confidence of >5�. 10 of these 13 stars were sufficiently observed to be designated as MOSES Objects of Interest (MOIs), but the data were not of the quality required for the stellar and planetary modelling desired for the work in this thesis. As such, we ruled out a ground-based observing approach using this data set.
The Transiting Exoplanet Survey Satellite (TESS) data were scoured for δ Scuti host stars, suitable targets as their signature pulsation frequencies allow them to be well-modelled. Main-sequence � Scuti host stars are extremely rare: only seven are known in the literature. Two TOIs were chosen to be studied in detail, TIC 409934330 and TIC 156987351. A grid of stellar models was built with software mesa, based on a calculated range of stellar parameters; each model was then set pulsating by the software gyre. In parallel, the TESS data for each target were analysed in Period04 to extract, separately, the orbital frequency (and its harmonics) and the pulsation frequencies of the two targets. Finally, a chi-squared analysis was employed to determine the best-fit model star for each target, by comparing the respective gyre frequencies with the TESS-extracted frequencies. The final models produced a mass and radius for each target of 2.10 ± 0.19M� and 4.72 ± 0.44R�, and 1.63 ± 0.15M� and 3.05 ± 0.28R�, respectively, amongst other parameters.
Spectroscopic ground-based observations of these targets using the Southern African Large Telescope (SALT) provided spectra that were analysed in the software iSpec, determining a Teff of 8062±29K for TIC 409934330 and 7231±63K for TIC 156987351. The software exofastv2 used these parameters to deduce the nature of the transiting companions: TIC 409934330 hosts a 2.5+31.0 −2.1 MJ, 1.03+0.85 −0.49 RJ “hot-Jupiter”, and TIC 156987351 hosts a 0.39+7.90 −0.33MJ, 0.97+0.56 −0.67 RJ “hot-Saturn”.
Hence, we have added two more examples to the δ Scuti host star population.
Populating the HR diagram with all nine now-known examples, it became clear they all existed within a very narrow region of parameter space that we labelled “The δ Scuti Cone” — furthermore, all nine stars lay at the very base of the δ Scuti region in the classical instability strip. We explained this using the hypothesis that the more luminous δ Scuti stars disrupt their proto-planetary discs with their stellar winds before their planets can form. In addition, we included � Pictoris in our final investigation since it is a well-studied pre-main sequence δ Scuti host star, and its position on the HR diagram is consistent with our sample. We explored the theoretical δ Scuti instability strip according to Dupret et al. (2004), but show that it is too narrow and does not agree with our population, which agrees better with the empirical δ Scuti instability strip of Murphy et al. (2019).
It is recommended to investigate, in detail, the remaining planet candidates that lie in and around the The δ Scuti Cone, to ascertain their physical properties and environments that support, or otherwise, the Cone’s presence: such results could lead to defining a new sub-region on the classical instability strip
Path Optimization of a Collaborative Four-Bar Mechanism with an Elastic Coupler
No full textKinematic synthesis is a widely used method in the design and analysis of mechanical systems. However, utilizing elasticity in four-bar systems poses challenges in achieving precise motion control. The current study proposes a kinematic synthesis optimization methodology using an optimization approach and demonstrates it on a four-bar mechanism having an elastic end effector that is fixed to its coupler. The proposed methodology includes parameter extraction for similar mechanisms with rigid links with respect to given path constraints and uses the results as starting boundary conditions for the mechanism having elastic counterparts by considering workspace disturbance negation as design constraints via the proposed optimization methodology. Results show that without adding additional sensory components and degrees of freedom, the proposed methodology allows efficient parameter extraction to fulfill desired tasks with minimal error similar to the rigid link counter version of the mechanism
Transformative Technologies for Children: Going beyond ‘Good'
Get PDFAgainst the backdrop of growing screen time, rising mental health issues, increasing loneliness, and general ill effects from technology use, it is time for the CHI community to consider how technology for children can be better than ‘good’. There are many examples of good technologies across research and commercial products, for technology to be more than ‘good’ it needs to have a transformative effect on children’s lives that lasts beyond a monetary positive experience. Such technology could, for example, build resilience, encourage compassion, promote inclusive behaviors, and improve overall happiness. This workshop will explore what better than ‘good’ technology may look like and create a manifesto for the CHI community to support Transformative Technologies for children in our work