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“I’m quite proud of how we’ve handled it”: health professionals’ experiences of returning additional findings from the 100,000 genomes project
Get PDFParticipants in the 100,000 Genomes Project (100kGP) could consent to receive additional finding (AF) results, individual variants relating to genes associated with susceptibility to cancer and familial hypercholesterolemia (FH). In the study reported here, qualitative interviews were used to explore the experiences of National Health Service (NHS) professionals from across England who were tasked with returning over 80,000 “no AF” results and 700 positive AF results to 100kGP participants. Interviews were conducted with 45 professionals from a range of backgrounds, including Genetic Counsellors, Clinical Geneticists, FH Clinical Nurse Specialists and Clinical Scientists. Interviews were analysed using a codebook thematic analysis approach. Returning AF results has been a significant endeavour, with challenges for pathways, administrative processes and clinical and laboratory time when the capacity of NHS services is already stretched. Professionals discussed going “above and beyond” to prioritise patient care through pathway design, additional clinics, overtime, longer appointments and provision of follow-up appointments. Professionals also described facing practical and emotional challenges when returning AFs. Benefits for patients from receiving AFs in the 100kGP were highlighted and professionals were generally positive about offering clinically actionable AFs within routine NHS clinical care. Professionals were, however, cautious around the implementation of AFs into routine care and felt more research and discussion was needed to determine which AFs to offer, approaches to consent and communication of results, costs and the potential strain on NHS capacity and resources. Further consultation is required with careful review of pathways and resources before offering AFs in clinical practice
Chronic murine schistosomiasis causes aberrant hemostasis
Get PDFBackground: Schistosomiasis afflicts >250 million people worldwide, leading to an annual loss of >3 million disability adjusted life years. Schistosoma mansoni causes intestinal schistosomiasis with parasite eggs either transversing intestinal tissue or lodging within the liver and other organs, causing intestinal hemorrhage and liver pathology. Large (~1cm) adult worms survive for years within blood vessels, but we lack a clear understanding of their impact on hemostasis. Objectives: We used a chronic mouse model of schistosomiasis to determine the impact on platelet numbers, phenotype and function. Methods: Hemostatic function was assessed by platelet phenotyping (flow cytometry and proteomics), whole blood aggregometry and longitudinal coagulometry. Results: Whilst platelets from schistosome-infected mice lack elevated surface P-selectin and activated αIIbβ3, unbiased proteomic analysis reveals infection-induced increases in MHC-I, IgM and IgG antibodies, and complement components. Whole blood from schistosome-infected mice spontaneously aggregates in the absence of exogenous agonists. Conversely, prothrombin and activated partial thromboplastin times are prolonged at the chronic stage of infection (10-12 weeks). Conclusions: A mouse model of S. mansoni infection shows wide-ranging changes in hemostatic function which may have clinically relevant implications for populations in endemic regions
Reconstruction at the meso level:Rebuilding everyday life in post-conflict Malakand, Pakistan
Get PDFMeso level institutions are integral to everyday life but are often overlooked in post-civil war rebuilding efforts. This study, based on a qualitative dataset of 27 interviews and 11 focus groups conducted in Malakand Division, Pakistan, reveals that many of the institutions that are vital to local stakeholders have been neglected in the region’s reconstruction efforts. In addition to considerable loss of life, the conflict between the Taliban and Pakistan’s armed forces caused extensive damage not only to physical infrastructure but also to a range of less formalised aspects of Pashtun society. Our findings suggest that prioritising meso-level institutional rebuilding is essential for restoring community relationships, trust, and resilience and so could enhance the effectiveness of postconflict reconstruction strategies
Analyzing patient-reported outcome data in oncology care
No full textElectronic Patient-Reported Outcome Measures (ePROMs) are collected routinely at an oncology institution throughout patients’ treatment and follow-up. Clinicians from the institution's head and neck team are investigating whether head and neck cancer patients with varying levels of comorbidity experience different changes in their ability to perform activities of daily living before and after radiotherapy. Clinicians hypothesize that patients with more severe baseline comorbidity experience worse changes in symptoms and quality of life scores from pre- to post-radiotherapy compared to those with no or only mild comorbidity. The institutions’ ePROM questionnaire for patients with head and neck cancer includes multiple symptom questions, plus the EuroQol EQ-5D-5L. The latter compromises five dimensions including usual activities; scores are measured on a 1 to 5 scale, where 1 indicates patients have no problems doing their usual activities and 5 indicates patients are unable to do their usual activities [1].
The team is considering the most appropriate method to analyze the data, given the ordinal nature of the endpoint and the longitudinal structure of the dataset
Young children (6–7 years) can meaningfully participate in cognitive interviews assessing comprehensibility in health-related quality of life domains: a qualitative study
Get PDFPurpose
Establishing the comprehensibility of patient reported outcome measures (PROMs) in quality of life research is essential. Cognitive interviews are recommended as a ‘gold standard’ for evaluating comprehensibility among adult populations but are not routinely used with young children (≤ 7 years). The current study therefore aimed to evaluate the feasibility of cognitive interviewing using traditional and adapted methods with children aged 6–7 years to evaluate PROM item comprehensibility.
Methods
Fourteen children (6–7 years) with a range of diagnosed health conditions participated in individual cognitive interviews. Each child answered six mock PROM items (physical, psychological, and social health-related quality of life domains) and concurrent verbal probes were used to evaluate item comprehensibility. Interviews were audio recorded and transcribed verbatim. Transcripts were analysed using a novel Comprehensibility Continuum which coded the extent of alignment between children’s explanations of items and intended meanings.
Results
Cognitive interviews were successful; extent of comprehensibility could be determined for 83/84 (99%) item discussions. Most items were comprehensible, with children describing the intended item meaning for 74/84 (88%) items evidenced by contextual examples and/or de-contextual definitions in children’s responses to verbal probes. Three items (‘walk’, ‘sad’, and ‘made fun of’) were identified as requiring further testing and/or refinement, where a lower percentage of discussions contained evidence of intended item meaning.
Conclusion
Despite previous uncertainty, this study demonstrates how methodological challenges can be addressed to enable young children’s participation in cognitive interviews evaluating item comprehensibility, ultimately contributing to the accurate measurement of young children’s health outcomes in healthcare and research
Priestly Provision at the Periphery: Building the Church in Tenth-Century Catalonia
Get PDFIn standard accounts of Christian expansion into the frontier with Islam in early medieval Iberia, if the church plays a role, it is the monastic church, operating as frontier land developer. Alternatively, this action is left to a pioneer peasantry or to acquisitive warlords, with the church only following. A close-up study of the activities of priests around the Catalan frontier town of Manresa, however, shows a collegiate secular church structure building up frontier infrastructure well in advance of developing monasticism. These peripheral priests wove neighbourhoods into larger church networks which were the first institutional structures to develop in this area. Such a pattern may also be characteristic in similar areas elsewhere
A non-equilibrium slurry model for planetary cores with application to Earth’s F-layer
Get PDFSlurry regions may exist in the cores of several terrestrial bodies and are expected to influence the dynamics of deep planetary interiors and the viability of maintaining global magnetic fields. Here, we develop a two-component slurry model of the lowermost outer core of the Earth (the F-layer). In contrast to most previous models of slurries in planetary cores, we explicitly model the physics controlling the nucleation, growth and sinking of individual iron crystals and do not assume that the layer is in phase equilibrium. We assume that falling crystals do not interact and that the temperature and the overall composition are imposed, which allows us to solve for the volume fraction of solid in the layer and the size distribution of crystals. Models that produce a plausible heat budget and density excess compared with the bulk core yield a solid fraction that is far below that predicted by phase equilibrium and have a crystal size distribution dominated by the smallest particles with a maximum particle radii of 3 cm. The model can be used to understand the role of non-equilibrium effects in other planetary cores
Exploring the Interface Between Planetary Boundaries and Palaeoecology
Get PDFThe concepts of planetary boundaries are influential in the sustainability literature and assist in delineating the 'safe operating spaces' beyond which critical Earth system processes could collapse. Moving away from our current trajectory towards 'hothouse Earth' will require knowledge of how Earth systems have varied throughout the Holocene, and whether and how far we have deviated from past ranges of variability. Such information can inform decisions about where change could be resisted, accepted or where adaptation is inevitable. The need for information on long-term (Holocene) change provides an interface for palaeoecology and sustainability that remains underexploited. In this position paper, we explore this interface, first discussing the need for long-term perspectives and introducing examples where palaeoecology has been used in defining safe operating spaces and constraining limits of acceptable change. We describe advances in quantitative methods for analysis of time-series data that strengthen the contribution of palaeoecology to the concepts of planetary boundaries and safe operating spaces. We consider the importance of issues of scaling from landscape to regional and global scales in operationalising planetary boundaries concepts. We distil principles for this field of research going forward and introduce three case studies which will form the basis of research on these topics
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