16 research outputs found

    Table_1_The economic burden of individuals living with generalized myasthenia gravis and facing social determinants of health challenges.DOCX

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    ObjectiveBetter understanding the impact of social determinants of health (SDOH) barriers from the patient perspective is crucial to improve holistic patient support in generalized myasthenia gravis (gMG), a rare autoimmune disorder with high disease and treatment burden. The objective of this study was to identify economic challenges experienced by individuals living with gMG and SDOH barriers to better address current unmet needs.MethodsAdults (18–75 years) living with gMG and experiencing SDOH barriers in the United States were recruited to a mixed-methods study including qualitative interviews and a web-based quantitative survey. Quotas were implemented to include a balanced spread of baseline demographic categories including insurance type, living environment, and employment status among the study sample. Direct and indirect economic challenges were identified by degree of concern.ResultsThe survey was completed by 38 individuals living with gMG, the majority of whom were enrolled in public insurance and not employed. The most commonly reported major economic concerns were managing funds for emergency care (66%), loss of income (61%), and non-medical expenses (58%), highlighting the diversity of economic challenges. Individuals who were using public insurance plans, living in non-urban environments, and unemployed experienced pronounced challenges around managing non-medical costs and accessing government assistance.ConclusionBoth direct and indirect costs were emphasized as major concerns among individuals living with gMG and SDOH barriers. Increasing access to relevant, personalized, and holistic resources, including care management, should be prioritized to improve disease management and outcomes for individuals living with gMG.</p

    Foraging Behaviour and Landscape Utilisation by the Endangered Golden-Crowned Flying Fox (<i>Acerodon jubatus</i>), The Philippines

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    <div><p>Species of Old World fruit-bats (family <i>Pteropodidae</i>) have been identified as the natural hosts of a number of novel and highly pathogenic viruses threatening livestock and human health. We used GPS data loggers to record the nocturnal foraging movements of <i>Acerodon jubatus</i>, the Golden-crowned flying fox in the Philippines to better understand the landscape utilisation of this iconic species, with the dual objectives of pre-empting disease emergence and supporting conservation management. Data loggers were deployed on eight of 54 <i>A. jubatus</i> (two males and six females) captured near Subic Bay on the Philippine island of Luzon between 22 November and 2 December 2010. Bodyweight ranged from 730 g to 1002 g, translating to a weight burden of 3–4% of bodyweight. Six of the eight loggers yielded useful data over 2–10 days, showing variability in the nature and range of individual bat movements. The majority of foraging locations were in closed forest and most were remote from evident human activity. Forty-six discrete foraging locations and five previously unrecorded roost locations were identified. Our findings indicate that foraging is not a random event, with the majority of bats exhibiting repetitious foraging movements night-to-night, that apparently intact forest provides the primary foraging resource, and that known roost locations substantially underestimate the true number (and location) of roosts. Our initial findings support policy and decision-making across perspectives including landscape management, species conservation, and potentially disease emergence.</p></div

    Attachment of GPS data logger.

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    <p>The area distal to the scapulae was clipped to 2–3 mm length (not shown), and skin adhesive (Sauer-Hautkleber™) applied and allowed to semi-cure (A). The base of the logger was coated with 100% ethyl isocyanoacrylate glue (B), and pressed onto the bed of tissue glue, with the aerial trailing caudally (C). The logger was held firmly in place until the glue dried and the bat was released within 2 hours (D).</p
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