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Impact of severe Hemophilia on costs and quality of life in South American men: Findings from the CHESS LATAM study
Get PDFSevere hemophilia is a rare bleeding disorder, associated with high socioeconomic costs and burden. The "Cost of Hemophilia in Latin America: A Socioeconomic Survey" (CHESS LATAM) study aimed to quantify this burden across 4 Latin American countries; Argentina, Brazil, Chile, and Colombia. Demographic, clinical, and medical data of patients were captured through their hemophilia specialists during the period between September 2020 and May 2021. Direct medical resource use was captured by a physician survey, and direct nonmedical and indirect costs were captured via a patient survey. Health-related quality of life was also captured from a patient perspective. Local country-specific unit costs were applied to resource use to calculate per-patient costs over a 12-month period. Physician data were captured for a total of 830 patients. For a subsample, 153 (18% of the sample) associated patient surveys were completed. Annual cost of severe hemophilia across the 4 countries was estimated at less than US 234 237) per patient. Factor replacement therapy accounted for the majority of costs (up to 99%). Indirect costs were driven by patient and caregiver work loss. The results of the CHESS LATAM study highlight the large burden faced by patients with severe hemophilia A and B in Latin America. Despite the dominating treatment costs, the indirect impact of hemophilia on the patients and those who care for them was still substantial and should not be dismissed. [Abstract copyright: Copyright © 2025 The Authors. Published by Elsevier Inc. All rights reserved.]BioMarin Pharmaceutical Inc and F. Hoffmann-La Roche Ltd
Reference values for wrist-worn accelerometer physical activity metrics in England children and adolescents
Get PDF© The Author(s) 2023.Background: Over the last decade use of raw acceleration metrics to assess physical activity has increased. Metrics such as Euclidean Norm Minus One (ENMO), and Mean Amplitude Deviation (MAD) can be used to generate metrics which describe physical activity volume (average acceleration), intensity distribution (intensity gradient), and intensity of the most active periods (MX metrics) of the day. Presently, relatively little comparative data for these metrics exists in youth. To address this need, this study presents age- and sex-specific reference percentile values in England youth and compares physical activity volume and intensity profiles by age and sex. Methods: Wrist-worn accelerometer data from 10 studies involving youth aged 5 to 15 y were pooled. Weekday and weekend waking hours were first calculated for youth in school Years (Y) 1&2, Y4&5, Y6&7, and Y8&9 to determine waking hours durations by age-groups and day types. A valid waking hours day was defined as accelerometer wear for ≥ 600 min·d−1 and participants with ≥ 3 valid weekdays and ≥ 1 valid weekend day were included. Mean ENMO- and MAD-generated average acceleration, intensity gradient, and MX metrics were calculated and summarised as weighted week averages. Sex-specific smoothed percentile curves were generated for each metric using Generalized Additive Models for Location Scale and Shape. Linear mixed models examined age and sex differences. Results: The analytical sample included 1250 participants. Physical activity peaked between ages 6.5–10.5 y, depending on metric. For all metrics the highest activity levels occurred in less active participants (3rd-50th percentile) and girls, 0.5 to 1.5 y earlier than more active peers, and boys, respectively. Irrespective of metric, boys were more active than girls (p < .001) and physical activity was lowest in the Y8&9 group, particularly when compared to the Y1&2 group (p < .001). Conclusions: Percentile reference values for average acceleration, intensity gradient, and MX metrics have utility in describing age- and sex-specific values for physical activity volume and intensity in youth. There is a need to generate nationally-representative wrist-acceleration population-referenced norms for these metrics to further facilitate health-related physical activity research and promotion.Funding for selected contributing studies was provided by the Waterloo Foundation (#1669/3509), West Lancashire Sport Partnership, West Lancashire Leisure Trust, Edge Hill University, and Wigan Council. Alex Rowlands is supported by the Lifestyle Theme of the Leicester NHR Leicester Biomedical Research Centre and NIHR Applied Research Collaborations East Midlands (ARC-EM)
The feasibility and acceptability of an online CPD programme to enhance PE teachers’ knowledge of muscular fitness activity
Get PDF© 2022 by the authors. Licensee MDPI, Basel, Switzerland.Schools provide an opportunity to enhance muscular fitness of English youth during physical education (PE). Continued professional development (CPD) among teachers may improve muscular fitness activity delivery in schools. This study sought to assess the feasibility and acceptability of an online CPD programme to enhance PE teachers' knowledge of muscular fitness activity.
METHODS: Co-production of an online CPD platform was undertaken with five secondary school PE teachers. A quasi-experimental pre-post control group design for the CPD was adopted (CPD group n = 76, control n = 32). Upon CPD completion feedback was solicited for qualitative analysis.
RESULTS: Pre-and-post CPD knowledge quiz data were available from 65 participants (55.4% male). The median knowledge quiz change score was significantly higher in the CPD group than in the wait list control group (CPD score vs. control score; U =37, z = -5.96, p < 0.01). Three primary themes reflecting factors associated with the acceptability and feasibility were (1) practical application, (2) support and resources, and (3) knowledge and confidence.
CONCLUSIONS: Co-production of an online CPD programme can improve knowledge and affect practice. PE teachers that completed the CPD reported the online platform was beneficial to overcoming the limitations of face-to-face CPD such as time and financial constraints and suggested the content covered was beneficial and appropriate to their teaching. Future work is required to establish links between teachers' learning following CPD, the translation into PE practice and student MF outcomes.Unfunde
Adolescent time use and mental health: a cross-sectional, compositional analysis in the Millennium Cohort Study
Get PDF© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions.OBJECTIVE: To examine the association of 24-hour time-use compositions with mental health in a large, geographically diverse sample of UK adolescents.
DESIGN: Cross-sectional, secondary data analysis.
SETTING: Millennium Cohort Study (sixth survey), a UK-based prospective birth cohort.
PARTICIPANTS: Data were available from 4642 adolescents aged 14 years. Analytical samples for weekday and weekend analyses were n=3485 and n=3468, respectively (45% boys, 85% white ethnicity).
PRIMARY AND SECONDARY OUTCOME MEASURES: Primary outcome measures were the Strengths and Difficulties Questionnaire (SDQ, socioemotional behaviour), Mood and Feelings Questionnaire (MFQ, depressive symptoms) and Rosenberg Self-Esteem Scale (RSE, self-esteem). Behavioural exposure data were derived from 24-hour time-use diaries.
RESULTS: On weekdays, participants spent approximately 54% of their time in sleep, 3% in physical activity, 9% in school-related activities, 6% in hobbies, 11% using electronic media and 16% in domestic activities. Predicted differences in SDQ, MFQ and RSE were statistically significant for all models (weekday and weekend) that simulated the addition or removal of 15 min physical activity, with an increase in activity being associated with improved mental health and vice versa. Predicted differences in RSE were also significant for simulated changes in electronic media use; an increase in electronic media use was associated with reduced self-esteem.
CONCLUSION: Small but consistent associations were observed between physical activity, electronic media use and selected markers of mental health. Findings support the delivery of physical activity interventions to promote mental health during adolescence, without the need to specifically target or protect time spent in other activities.Unfunde
Improvement of water quality for mass anopheline rearing: Dynamics of larval tray bacterial communities under different water treatments revealed by 16S ribosomal RNA amplicon sequencing
Get PDF© The Author(s) 2025. Published by Oxford University Press on behalf of Applied Microbiology International.BACKGROUND: Immature anophelines inhabit aquatic environments with diverse physicochemical properties and microorganisms. In insectary settings, ammonia accumulation in larval rearing trays can lead to high larval mortality. Bacterial communities in these trays may influence ammonia levels through nitrification and denitrification. While symbiotic bacteria are known to be crucial for nutrition, digestion, reproduction, and immune responses in anophelines, the microbial communities specifically associated with Anopheles coluzzii larvae have not been characterised.
METHODS AND RESULTS: Building on a study examining ammonia-capturing zeolite and water changes for rearing Anopheles coluzzii, this research characterised the bacterial communities using 16S rRNA gene sequencing to identify species linked to larval survival and phenotypic quality. Functional filters were applied to identify bacteria related to ammonia nitrification and their impact on larval development. qPCR was used to validate the sequencing data for the ten most significant bacteria. Water changes significantly reduced bacterial diversity and abundance, improving adult mosquito development and quality. In contrast, untreated trays showed a higher abundance of potentially harmful bacteria, adversely affecting development. Applying zeolite increased nitrifying bacteria presence, benefiting mosquito growth while lowering toxic bacteria levels-trends confirmed by qPCR.
CONCLUSIONS: This study offers insights into the bacterial communities in mosquito larval-rearing water, highlighting species that could enhance ammonia nitrification and overall rearing success.This work was supported by a PhD scholarship from Faculty for the Future fellowship, Schlumberger Foundation, The Hague, Netherlands, and Niger Delta Development Commission, Nigeria to N.O.
The Palgrave Encyclopedia of Interest Groups, Lobbying and Public Affairs
No full text© 2022 The Author(s), under exclusive licence to Springer Nature Switzerland AG.Encyclopedia entryUnfunde
Coaching for wellbeing and engagement in contemporary work environments
Get PDFWellbeing and engagement in the workplace have been on the decline since 2020. This decline is attributed to factors such as economic instability, technological change, demographic shifts and new workplace settings employees and employers are experimenting with. This atmosphere continues to challenge employers and employees. Increased levels of flexibility and autonomy bring benefits and simultaneously pose heavy demands on workforces and companies. Upskilling workforces and leaders to better navigate these new work environments is indispensable. Extant literature acknowledges a decline in wellbeing and engagement but is inconclusive about what skills are required to equip the future workforces. Workforces have a strong desire in keeping the benefits flexibility and autonomy offer despite the negative impacts likewise evidenced. Leaders play an
important role in shaping workplaces and in supporting their workforces. Synchronously, leaders themselves must develop new skills and drive the cultural and technological transformation of their organisations.
This research project aims to provide more clarity about the specific skills leaders require to navigate these ambivalent dynamics and complex workplace situations. Furthermore, the role of coaching in these evolving workplace settings is investigated. A multimethod approach is deployed, comprising an online questionnaire to the researcher’s client base in Germany and England, her network on LinkedIn, and two focus groups to further reveal latent themes developed in the online questionnaire. Reflexive thematic analysis is used to develop themes from both datasets to answer the research questions posed.
The findings of this research project add knowledge to existing literature about the growing importance of flexibility and autonomy for workforces, the ambivalent nature flexibility and autonomy entails, and how wellbeing and engagement can
be negatively impacted by these paradoxical dynamics. Insights are added about the interrelatedness of competing interests and the impact an individual’s decision can have on the collective causing friction at task and at people level. A deeper understanding is provided for work process adaptation to alleviate workloads and time spent in meetings, paired with suggestions on how to humanise workplaces dominated by technology. Additionally, the findings present recommendations for
practitioners to better balance ambiguities and paradoxical needs of new work. Ideas are proposed to re-design learning and leadership development programmes to upskill employees in organisations so they can benefit from the gains of flexible work arrangements and mitigate the deficiencies. A conceptual model synthesises the contributions made and exposes the unique skills combinations from the findings to support wellbeing and engagement in contemporary workplaces. A 4-phase framework is offered to practitioners to support reflections and facilitate skills transitions to the workplace. The findings and recommendations developed from the data are applicable to specific sectors including the automotive industry and their suppliers
Antipredator behaviour as a major determinant of prey altitudinal movements: the wolf and the chamois
Get PDFBackground: Predators have the potential to affect prey ecology through both direct effects on population dynamics or indirect effects on behaviour, e.g., by triggering antipredator strategies. Direct effects of predation on single prey species may be limited in ecosystems hosting alternative prey, possibly being overwhelmed by indirect effects. The novel exposure to a predator would provide the opportunity to test for immediate prey responses, but information is scanty for areas recolonised by carnivores. We took advantage of the natural expansion of the wolf Canis lupus in a protected area of western Alps hosting five ungulate species to test the potential for direct versus indirect effects on the main prey, i.e., a widespread mountain herbivore (the Northern chamois Rupicapra rupicapra). After verifying the contribution of the latter to the diet of the former, we used a semi-experimental (before vs. after) approach by comparing chamois demography, elevation used and group size between two valleys with different recolonisation time (Site A: medium-term vs. Site B: short-term). Results: Scat analyses (N = 335 samples) indicated that chamois were the staple in the wolf diet in both valleys. Analyses of counts throughout 21 years supported no direct effect of wolf on chamois abundance and survival. Following wolf recolonisation, female chamois (n = 3594 observations) in Site A were observed at average elevations 137 m higher compared to the former period, and a concurrent decrease of group size was reported; these effects were not detected in Site B. The same trend was not observed in temperature, precipitation or NDVI, providing no support to a weather- or resource-mediated uplift. Conclusions: Although direct/indirect effects of current changes in weather patterns on the observed uplift of chamois may not be ruled out, our results suggest antipredator behaviour as a main determinant of chamois upshift. Finally, we discuss the role of indirect versus direct short-term prey responses in complex ecosystems.The study was financially supported by the Gran Paradiso National Park Agency. FF acknowledges the contribution of the National Biodiversity Future Center – NBFC, Project funded under the National Recovery and Resilience Plan (NRRP), Mission 4 Component 2 Investment 1.4 – Call for tender No. 3138 of 16 December 2021, rectified by Decree n.3175 of 18 December 2021 of Italian Ministry of University and Research funded by the European Union – NextGenerationEU
Dynamics of SARS-CoV-2 variants and mutations in Central Sweden between 2023 and 2024 and their potential implications on monoclonal antibodies pemivibart and sipavibart as PrEP in the region
Get PDF© 2025 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.Background: Monoclonal antibodies (mAbs) are an important option against SARS-CoV-2, especially as pre-exposure prophylaxis (PrEP) for patients with immune system impairment. PrEP mAbs like sipavibart and pemivibart have been approved for limited use in several countries. Certain SARS-CoV-2 variants carry mutations in the spike (S) protein, conferring resistance to these mAbs.
Objectives: We aimed to examine the relative abundance of different circulating SARS-CoV-2 variants/mutations in central Sweden between 2023 and 2024, and to predict the effectiveness of sipavibart and pemivibart.
Methods: An amplicon-based Nanopore sequencing method was used for sequencing SARS-CoV-2 samples. Coronapp was used to identify mutations in these sequences. Using the published in vitro resistance data for sipavibart and pemivibart, the effectiveness of these mAbs was inferred.
Results: We have observed that the relative abundance of the KP.3.1.1 variant and the Q493E mutation started to increase in the later part of 2024 in the region. Also, since April 2024, the relative abundance of the F456L mutation reached 100% during many weeks until the end of the study period. The KP.3.1.1 variant is significantly resistant to pemivibart. Further, the presence of the F456L mutation in the Omicron subvariants confers high fold resistance towards sipavibart.
Conclusion: The use of sipavibart or pemivibart as PrEP for COVID-19 in the region may currently not be effective unless new SARS-CoV-2 variants appear not containing these resistance mutations. Further, new mAbs under development as PrEP for COVID-19 can be effectively used by routinely sequencing SARS-CoV-2 in patients to identify variants and resistance mutations.Regional Research Council Mid Sweden (RFR-994199)
Expanding the SiMPl Plasmid Toolbox for Use with Spectinomycin/Streptomycin
Get PDFWe recently developed the SiMPl plasmid toolbox, which is constituted by pairs of plasmids, generically indicated as pSiMPlx_N and pSiMPlx_C, which can be stably maintained in Escherichia coli with a single antibiotic x. The method exploits the split intein gp41-1 to reconstitute the enzyme conferring resistance toward the antibiotic x, whereby each enzyme fragment is expressed from one of the plasmids in the pair. pSiMPl plasmids are currently available for use with ampicillin, kanamycin, chloramphenicol, hygromycin, and puromycin. Here, we introduce another pair for use with spectinomycin/streptomycin, broadening the application spectrum of the SiMPl toolbox. To find functional splice sites in aminoglycoside adenylyltransferase, we apply a streamlined strategy looking exclusively at the flexibility of native cysteine and serine residues, which we first validated splitting the enzymes conferring resistance toward ampicillin, kanamycin, chloramphenicol, and hygromycin. This strategy could be used in the future to split other enzymes conferring resistance toward antibiotics.N/
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