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Mental illnesses are the greatest health problems faced by younger people. As a group, tertiary education students demonstrate higher levels of distress than their age matched peers who are not tertiary students, making them an at-risk group for the development of psychopathology. Therefore, this study investigates existing theories of resilience in order to determine how it may be promoted in tertiary education students. Data relating to affect, depression, anxiety, distress, and resilience were collected from 1072 tertiary education students during the COVID-19 pandemic. The results of this study found that positive affect was responsible for approximately 25% of the variance in depressive symptoms but less than 10% of the variance in symptoms of anxiety in tertiary students. The results further showed that positive affect was responsible for 21% of variance in overall distress and the 15% of variance in resilience. The findings of this study suggest that positive affect is more closely associated with symptoms of depression than with symptoms of anxiety in tertiary students. The results further suggest that positive affect may be a useful tool for relieving symptoms of depression and overall distress, and improving levels of resilience in this population. more...

Abstract Background Noonan Syndrome (NS) is a rare multisystemic disorder with heterogeneous phenotypic manifestations. The aim of this study was to analyse rates of survival, hospitalisation, surgeries and prescriptions in children born with NS in the first 10 years of life. Methods This is a multi-centre population-based cohort study. Data on 175 liveborn children diagnosed with NS from 11 EUROCAT congenital anomaly registries were linked to healthcare databases. Each registry applied a common data model to standardise data and run common syntax scripts to produce aggregated results which were pooled using random effects meta-analyses. Results Mortality rates were high in the first year of life with 5.4% (95%CI 1.5%-10.1%) of children dying before the age of 1 year with a further 2% dying up to age 5. In the first year, 87.9% (95%CI 75.3%-94.3%) of children were hospitalized and the median Length Of hospital Stay (LOS) was 15.3 days (95%CI 9.3–21.2). After the first year, the proportion of children hospitalized remained higher than 70%, but the LOS decreased to 1.3 days per year. In the first 5 years, 65.2% of children underwent a median of two surgical procedures. The median age at first surgery was 29 weeks. The proportion of children with an antibiotic prescription increased from 53.6% at age 1 to 62.4% yearly until 4 years of age. Conclusions Children with NS have high mortality and morbidity not only in the first year of life but also up to five years of age. This study evaluated the health burden of NS and provided information for clinicians, health-care providers and families. more...

This article provides an in-depth analysis of blockchain research in the energy sector, focusing on projects funded by the U.S. Department of Energy (DOE) and comparing them with industry-funded initiatives. A total of 110 funded activities within the U.S. power industry were successfully tracked and mapped into a newly developed categorization framework. This framework is designed to help research agencies to systematically understand their funded portfolio. Such characterization is expected to help them make effective investments, identify research gaps, measure impact, and advance technological progress to meet national goals. In line with this need, the proposed framework proposes a 2-D categorization matrix to systematically classify blockchain efforts within the energy sector.Under the proposed framework, the Energy System Domain serves as the primary classification dimension, categorizing use cases into 30 distinct applications. The second dimension, Blockchain Properties, captures the specific needs and functionalities provided by Blockchain technology. The aim was to capture blockchain’s applicability and functionality: where and why blockchain? Principles behind the selection of the viewpoint dimensions were carefully defined based on consensus obtained through the Blockchain for Optimized Security and Energy Management (BLOSEM) project. The mapped results show that activities within the Grid Automation, Coordination, and Control (31.8%), Marketplaces and Trading (25.5%), Foundational Blockchain Research (19.1%), and Supply Chain Management (17.3%) domains have been actively pursued to date. The three leading specific use case applications were identified as Transactive Energy Management for Marketplaces and Trading, Asset Management for Supply Chain Management, and Fundamental Blockchain for Foundational Blockchain Research. The Marketplaces and Trading and Retail Services Enablement domains stood out as being favored by industry by a factor greater than 2 (2.3 and 2.6, respectively), yet there seemed to be little to zero investment from DOE. Approximately 76% of the total projects prioritized Immutability, Identity Management, and Decentralization and/or Disintermediation compared to Asset Digitization and/or Tokenization, Automation, and Privacy and/or Anonymity. The greatest discrepancies between DOE and industry were in Asset Digitization and/or Tokenization and Automation. The industry efforts (36% in Asset Digitization/Tokenization and 22% in Automation) was 14 times and 2.4 times, respectively, more intensive than the DOE-sponsored efforts, indicating a significant discrepancy in industry versus government priorities. Overall, quantifying DOE-sponsored projects and industry activities through mapping provides clarity on portfolio investments and opportunities for future research. more...

Abstract Passive acoustic recorders have emerged as powerful tools for ecological monitoring. However, effective monitoring is not simply an act of recording sounds. To have meaning for conservation and management, acoustic monitoring needs to be properly planned and analyzed to yield high quality information. Here, we provide a set of considerations for the design of an effective acoustic monitoring program. We argue that such a program, has the following attributes: (1) has established appropriate partnerships with landowners, Traditional Owners, researchers, or other relevant stakeholders, (2) is based on clear objectives and questions, (3) is explicit in its target sound signals, (4) has considered in‐field sensor placement for a range of factors, including experimental design, statistical power, background noise, and potential impacts on human privacy and animal disturbance, (5) has a justified recording schedule and periodicity, (6) has methods to process sound data in line with objectives, and (7) has protocols for permanent data storage and access. Acoustic monitoring is increasingly used in large‐scale programs and will be important in addressing global biodiversity targets and new biodiversity markets. It is critical that new monitoring programs are designed to effectively and efficiently capture data that address pertinent and emerging issues in conservation. more...

Introduction Linking healthcare data sets can create valuable resources for research, particularly when investigating rare exposures or outcomes. However, across Europe, the permissions processes required to access data can be complex. This paper documents the processes required by the EUROlinkCAT study investigators to research the health and survival of children with congenital anomalies in Europe.Methods Eighteen congenital anomaly registries in 14 countries provided information on all the permissions required to perform surveillance of congenital anomalies and to link their data on live births with available vital statistics and healthcare databases for research. Small number restrictions imposed by data providers were also documented.Results The permissions requirements varied substantially, with certain registries able to conduct congenital anomaly surveillance as part of national or regional healthcare provision, while others were required to obtain ethics approvals or informed consent. Data linkage and analysis for research purposes added additional layers of complexity for registries, with some required to obtain several permissions, including ethics approvals to link the data. Restrictions relating to small numbers often resulted in a registry’s data on specific congenital anomalies being unusable.Conclusion The permissions required to obtain and link data on children with congenital anomalies varied greatly across Europe. The variation and complexity present a significant obstacle to the use of such data, especially in large data linkage projects. Furthermore, small number restrictions severely limited the research that could be performed for children with specific rare congenital anomalies. more...

Abstract Objectives Behçet’s disease is a rare, chronic, incurable, multisystemic disease. It causes significant morbidity, with patients experiencing symptoms including mucous membrane ulcers, and joint pain and swelling. It is an important cause of avoidable blindness due to ocular involvement. The aetiology is unknown. The aims were to identify population prevalence of Behçet’s disease in Wales in comparison to other endemic and non-endemic regions, and provide an epidemiological profile of a case series of adult patients. This is the first analysis of data from the Adult Rare Diseases Surveillance Registry for Wales, established in 2020 as part of the COVID-19 pandemic response. Results Between 1995 and 2020, 347 adults and 5 children were recorded in Wales with a diagnosis of Behçet’s disease. Population prevalence was calculated as 11.1 per 100,000 population. Of the adult cases, 76.9% were female, and 6.6% died before the end of the study period. When comparing genders, there were no statistically significant differences in age at diagnosis, mortality or socioeconomic status. There was no evidence that the age at which cases were diagnosed had changed over time. Survival analyses showed no significant differences in durations of survival between genders or individuals residing in different WIMD 2019 quintiles. Age at diagnosis was the only factor significantly and independently associated with poorer durations of survival (p more...

Objective To examine the impact of the government communicating uncertainties relating to COVID-19 vaccine effectiveness on vaccination intention and trust after people are exposed to conflicting information.Design Experimental design where participants were randomly allocated to one of two groups.Setting Online.Participants 328 adults from a UK research panel.Intervention Participants received either certain or uncertain communications from a government representative about COVID-19 vaccine effectiveness, before receiving conflicting information about effectiveness.Main outcome measures Vaccination intention and trust in government.Results Compared with those who received the uncertain announcement from the government, participants who received the certain announcement reported a greater loss of vaccination intention (d=0.34, 95% CI (0.12 to 0.56), p=0.002) and trust (d=0.34, 95% CI (0.12 to 0.56), p=0.002) after receiving conflicting information.Conclusions Communicating with certainty about COVID-19 vaccines reduces vaccination intention and trust if conflicting information arises, whereas communicating uncertainties can protect people from the negative impact of exposure to conflicting information. There are likely to be other factors affecting vaccine intentions, which we do not account for in this study.Trial registration number Open Science Framework: https://osf.io/c73px/. more...

Objectives Education outcomes predict life chances; however disabilities and concurrent learning difficulties are often barriers to school performance. Low educational achievement is also linked with socio-economic deprivation. We aimed to quantify the association of these factors with education outcomes by ages 12 and 17 for children in Wales (UK). Approach We linked health, socio-economic and education data for children born after 1997 in Wales, registered with any one of 17 isolated congenital anomalies. Children were included if they had known education outcomes at ages 12 (n=9,223) and 17 (n=4524). A reference population comprised children born similarly but without anomalies, also having education records at 12 (n=261,827) and 17 (n=4,524). Multinomial logistic regressions determined the likelihood of attainment in compulsory subjects by age 12 and of attaining five GCSE qualifications by age 17. We adjusted for socio-economic status by using free school meal eligibility (household deprivation) and area-based indices of deprivation. Results We identified 14 and 11 isolated anomalies that reduced the likelihood of achieving educational standards by ages 12 and 17 respectively. Educational achievements were lower for children with Down syndrome, Turner syndrome, hydrocephalus and limb reduction defects, particularly at age 12, indicating that children with anomalies may catch-up with their peers. While children with anomalies were less likely to achieve five GCSEs by age 17, there was no difference in the grades of those who did so. Deprivation, particularly at household level, further reduced the likelihood of education success. At age 17, household deprivation reduced 3-fold the odds of achieving any five GCSEs grades A*-C. Conclusions Children with congenital anomalies from the most deprived communities and households are at particular risk of low education achievement. To realise their potential, these children should be identified from medical records at an early age and offered targeted educational support as soon as possible and at every opportunity. more...

The major design parameters of SOFC have great impacts on the net electrical efficiency of SOFC/GT hybrid systems. The influence of the SOFC operating temperature and fuel utilization on the net efficiency of a pressurized solid oxide fuel cell gas turbine hybrid system was studied in this paper. The system model was combined a 1D SOFC model, which included a lumped equilibrium steam methane reformer model in the Simulink, with a gas turbine recuperated cycle model in Ebsilon®. A system design point study was established to observe the coupling impacts of SOFC operating temperature and fuel utilization on the system performance. Thirty design cases of SOFC operating temperatures (635 °C–835 °C) over a range of SOFC fuel utilization(45%–90%) were evaluated. The optimal SOFC fuel utilization shifted from 65% to 55% when the SOFC operating temperature decreased from 835 °C to 635 °C. The maximal(minimal) system efficiency was 74%(49%) at 65%(90%) SOFC fuel utilization with operating SOFC at 835 °C(635 °C). The results show that high operating temperature leads to the high efficiency of the entire hybrid system, but high fuel utilization might cause a decrease in system efficiency. more...

Background: Myelofibrosis (MF) is a blood cancer associated with splenomegaly, blood count abnormalities, reduced life expectancy and high prevalence of disease-associated symptoms. Current treatment options for MF are diverse, with limited data on management strategies in real-world practice in the United Kingdom. Methods: The REALISM UK study was a multi-center, retrospective, non-interventional study, which documented the early management of patients with MF. The primary endpoint was the time from diagnosis to active treatment. Discussion: Two hundred patients were included (63% [ n = 126/200] with primary MF; 37% [ n = 74/200] with secondary MF). Symptoms and prognostic scores at diagnosis were poorly documented, with infrequent use of patient reported outcome measures. ‘Watch and wait’ was the first management strategy for 53.5% ( n = 107/200) of patients, while the most commonly used active treatments were hydroxycarbamide and ruxolitinib. Only 5% of patients proceeded to allogeneic transplant. The median (IQR) time to first active treatment was 46 days (0–350); patients with higher risk disease were prescribed active treatment sooner. Conclusion: These results provide insight into real-world clinical practice for patients with MF in the United Kingdom. Despite the known high prevalence of disease-associated symptoms in MF, symptoms were poorly documented. Most patients were initially observed or received hydroxycarbamide, and ruxolitinib was used as first-line management strategy in only a minority of patients. Plain Language Summary Background: Myelofibrosis is a rare blood cancer associated with symptoms that can seriously affect a patient’s daily life, such as enlarged spleen and decreased white and red blood cells. Although several treatments are available for patients with myelofibrosis, it is not clear which ones clinicians use most frequently. Methods: We aimed to review which treatments are usually given to patients with myelofibrosis in the UK, by collecting information from the medical records of 200 patients with myelofibrosis treated in different centres across the UK. Results: The results showed that the symptoms patients experienced were not always written down in the medical records. Similarly, clinical scores based on patient characteristics (which clinicians use to try to predict if a patient will respond to treatment well or not) were also missing from the medical records. Clinicians also rarely asked patients to complete questionnaires that try to measure the impact of myelofibrosis and its treatment on their health. The most common approach for patients with myelofibrosis in the UK was ‘watch and wait’, which over half of patients received. The most common drugs used for treatment were hydroxycarbamide and ruxolitinib; only a very small proportion of patients received a bone marrow transplant. On average, patients waited for 46 days before receiving a treatment, although patients considered to have a more aggressive type of disease received treatment sooner. Conclusion: The results of this study suggest that medical records can be missing key information, which is needed to decide which is the best way to treat a patient with myelofibrosis. They also suggest that clinicians in the UK prefer observation to treatment for a large number of patients with myelofibrosis. This could mean that the approach used for many patients with myelofibrosis does not help them to control symptoms that have an impact on their daily lives. more...

The ever-changing nature of the power industry will require the implementation of hybrid energy systems. Integration of tightly coupled components in hybrids often involves the diversion of exhaust gas flow. An innovative smart material actuation technology is proposed to replace traditional electro-mechanical actuated valve mechanisms with lighter and less expensive actuators. A shape memory alloy (SMA) spring-actuated valve was designed for high-temperature service to demonstrate the promise of smart materials in control valve applications. With SMA springs only generating a maximum force of 3.2 N, an innovative valve design was necessary. To demonstrate the concept, a 3-inch Nominal Pipe Size valve was designed, and 3D printed using the stereolithography technique. Increasing the electrical current to actuate the SMA springs reduced actuation time. The maximum current of 10 A produced the lowest actuation time of 2.85 s, with an observed maximum stroke rate of more than 100 stroke completion %/s (considering actuation open/close as 100% stroke) at the midrange. The final assembly of the valve was estimated to provide a cost reduction of more than 30% and a weight reduction of more than 80% compared to the other available automatic valves in the present market. more...