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  1. Article ; Online: “Because it is a rare disease…it needs to be brought to attention that there are things out of the norm”

    Karen M Bailey / Navdeep Sahota / Uyen To / Peter Hedera

    Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-

    a qualitative study of patient and physician experiences of Wilson disease diagnosis and management in the US

    2023  Volume 12

    Abstract: Abstract Background Wilson disease (WD) is a genetic disorder of copper metabolism that leads to copper accumulation in various organs, primarily the liver and brain, resulting in heterogenous hepatic, neurologic, and psychiatric symptoms. Diagnosis can ... ...

    Abstract Abstract Background Wilson disease (WD) is a genetic disorder of copper metabolism that leads to copper accumulation in various organs, primarily the liver and brain, resulting in heterogenous hepatic, neurologic, and psychiatric symptoms. Diagnosis can occur at any age, requiring lifelong treatment, which can involve liver transplantation. This qualitative study aims to understand the wider patient and physician experience of the diagnosis and management of WD in the US. Methods Primary data were collected from 1:1 semi structured interviews with US-based patients and physicians and thematically analyzed with NVivo. Results Twelve WD patients and 7 specialist WD physicians (hepatologists and neurologists) were interviewed. Analysis of the interviews revealed 18 themes, which were organized into 5 overarching categories: (1) Diagnosis journey, (2) Multidisciplinary approach, (3) Medication, (4) The role of insurance, and (5) Education, awareness, and support. Patients who presented with psychiatric or neurological symptoms reported longer diagnostic journeys (range 1 to 16 years) than those presenting with hepatic symptoms or through genetic screening (range 2 weeks to 3 years). All were also affected by geographical proximity to WD specialists and access to comprehensive insurance. Exploratory testing was often burdensome for patients, but receipt of a definitive diagnosis led to relief for some. Physicians emphasized the importance of multidisciplinary teams beyond hepatology, neurology, and psychiatry and recommended a combination of chelation, zinc, and a low-copper diet; however, only half the patients in this sample were on a chelator, and some struggled to access prescription zinc due to insurance issues. Caregivers often advocated for and supported adolescents with their medication and dietary regimen. Patients and physicians recommended more education and awareness for the healthcare community. Conclusions WD requires the coordination of care and medication among several specialists due to its complex ...
    Keywords Wilson disease ; Qualitative ; Interviews ; Patient-reported ; Treatment experience ; Medicine ; R
    Subject code 610
    Language English
    Publishing date 2023-06-01T00:00:00Z
    Publisher BMC
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  2. Article ; Online: The role of capital in drought adaptation among rural communities in Eswatini

    Karen M. Bailey / Robert A. McCleery / Grenville Barnes

    Ecology and Society, Vol 24, Iss 3, p

    2019  Volume 8

    Abstract: People are increasingly affected by climate change. In response, some people adapt, but others may not. The aim of our research was to understand what factors influence successful adaptation to climate change in context. We surveyed rural small-scale ... ...

    Abstract People are increasingly affected by climate change. In response, some people adapt, but others may not. The aim of our research was to understand what factors influence successful adaptation to climate change in context. We surveyed rural small-scale farmers in Eswatini who had recently experienced a severe drought, and collected data on adaptive capacity, measured as household access to five types of capital: natural (access to and use of natural resources), social (integration within local social networks), financial (income and wealth), physical (access to assets and infrastructure), and human (education and employment). Our goals were to identify which type of capital was most important in driving adaptation and to identify the specific ways in which capital supported adaptation. We found that social capital and natural capital increased successful drought adaptation more than other types of capital. Primarily, social and natural capital increased access to other resources and opportunities that enabled adaptation. Our research highlights the complex pathways along which capital operates to support adaptation, and furthers our understanding of in-situ adaptation experiences.
    Keywords climate change ; drought ; eswatini ; farming ; natural capital ; social capital ; Biology (General) ; QH301-705.5 ; Ecology ; QH540-549.5
    Subject code 338
    Language English
    Publishing date 2019-09-01T00:00:00Z
    Publisher Resilience Alliance
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  3. Article ; Online: Climate-Driven Adaptation, Household Capital, and Nutritional Outcomes among Farmers in Eswatini

    Karen M. Bailey / Robert A. McCleery / Grenville Barnes / Sarah L. McKune

    International Journal of Environmental Research and Public Health, Vol 16, Iss 21, p

    2019  Volume 4063

    Abstract: Globally, communities are increasingly impacted by the stressors of climate change. In response, people may adapt to maintain their livelihoods and overall health and nutrition. However, the relationship between climate adaptation and human nutrition is ... ...

    Abstract Globally, communities are increasingly impacted by the stressors of climate change. In response, people may adapt to maintain their livelihoods and overall health and nutrition. However, the relationship between climate adaptation and human nutrition is poorly understood and results of adaptation are often unclear. We investigated the relationship between adaptation and child nutrition, in Eswatini (formerly Swaziland) during an extreme drought. Households varied in both adaptation behavior and household resources and we found that, overall, households that adapted had better child nutrition than those that didn’t adapt. When controlling for the influence of household capital, we found that more vulnerable households, those with greater dependence on natural resources and lower income, had a stronger positive relationship between adaptation and nutrition than less vulnerable households. We also found that some adaptations had stronger positive relationships with nutrition than others. In our system, the adaptation that most strongly correlated with improved nutrition, selling chickens, most likely benefits from local social networksand consistent demand, and performed better than other adaptations. Our results emphasize the need to measure adaptation outcomes and identify and support the types of adaptations are most likely to improve nutrition in the future.
    Keywords climate change ; adaptation ; drought ; capital ; nutrition ; eswatini ; anthropometrics ; Medicine ; R
    Subject code 333
    Language English
    Publishing date 2019-10-01T00:00:00Z
    Publisher MDPI AG
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  4. Article ; Online: Using Very-High-Resolution Multispectral Classification to Estimate Savanna Fractional Vegetation Components

    Andrea E. Gaughan / Nicholas E. Kolarik / Forrest R. Stevens / Narcisa G. Pricope / Lin Cassidy / Jonathan Salerno / Karen M. Bailey / Michael Drake / Kyle Woodward / Joel Hartter

    Remote Sensing, Vol 14, Iss 551, p

    2022  Volume 551

    Abstract: Characterizing compositional and structural aspects of vegetation is critical to effectively assessing land function. When priorities are placed on ecological integrity, remotely sensed estimates of fractional vegetation components (FVCs) are useful for ... ...

    Abstract Characterizing compositional and structural aspects of vegetation is critical to effectively assessing land function. When priorities are placed on ecological integrity, remotely sensed estimates of fractional vegetation components (FVCs) are useful for measuring landscape-level habitat structure and function. In this study, we address whether FVC estimates, stratified by dominant vegetation type, vary with different classification approaches applied to very-high-resolution small unoccupied aerial system (UAS)-derived imagery. Using Parrot Sequoia imagery, flown on a DJI Mavic Pro micro-quadcopter, we compare pixel- and segment-based random forest classifiers alongside a vegetation height-threshold model for characterizing the FVC in a southern African dryland savanna. Results show differences in agreement between each classification method, with the most disagreement in shrub-dominated sites. When compared to vegetation classes chosen by visual identification, the pixel-based random forest classifier had the highest overall agreement and was the only classifier not to differ significantly from the hand-delineated FVC estimation. However, when separating out woody biomass components of tree and shrub, the vegetation height-threshold performed better than both random-forest approaches. These findings underscore the utility and challenges represented by very-high-resolution multispectral UAS-derived data (~10 cm ground resolution) and their uses to estimate FVC. Semi-automated approaches statistically differ from by-hand estimation in most cases; however, we present insights for approaches that are applicable across varying vegetation types and structural conditions. Importantly, characterization of savanna land function cannot rely only on a “greenness” measure but also requires a structural vegetation component. Underscoring these insights is that the spatial heterogeneity of vegetation structure on the landscape broadly informs land management, from land allocation, wildlife habitat use, natural resource ...
    Keywords savannas ; vegetation composition ; Africa ; random forest classifier ; vegetation structure ; unoccupied aerial systems ; Science ; Q
    Subject code 710
    Language English
    Publishing date 2022-01-01T00:00:00Z
    Publisher MDPI AG
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  5. Article ; Online: Modeling Community-Scale Natural Resource Use in a Transboundary Southern African Landscape

    Kyle D. Woodward / Narcisa G. Pricope / Forrest R. Stevens / Andrea E. Gaughan / Nicholas E. Kolarik / Michael D. Drake / Jonathan Salerno / Lin Cassidy / Joel Hartter / Karen M. Bailey / Henry Maseka Luwaya

    Remote Sensing, Vol 13, Iss 4, p

    Integrating Remote Sensing and Participatory Mapping

    2021  Volume 631

    Abstract: Remote sensing analyses focused on non-timber forest product (NTFP) collection and grazing are current research priorities of land systems science. However, mapping these particular land use patterns in rural heterogeneous landscapes is challenging ... ...

    Abstract Remote sensing analyses focused on non-timber forest product (NTFP) collection and grazing are current research priorities of land systems science. However, mapping these particular land use patterns in rural heterogeneous landscapes is challenging because their potential signatures on the landscape cannot be positively identified without fine-scale land use data for validation. Using field-mapped resource areas and household survey data from participatory mapping research, we combined various Landsat-derived indices with ancillary data associated with human habitation to model the intensity of grazing and NTFP collection activities at 100-m spatial resolution. The study area is situated centrally within a transboundary southern African landscape that encompasses community-based organization (CBO) areas across three countries. We conducted four iterations of pixel-based random forest models, modifying the variable set to determine which of the covariates are most informative, using the best fit predictions to summarize and compare resource use intensity by resource type and across communities. Pixels within georeferenced, field-mapped resource areas were used as training data. All models had overall accuracies above 60% but those using proxies for human habitation were more robust, with overall accuracies above 90%. The contribution of Landsat data as utilized in our modeling framework was negligible, and further research must be conducted to extract greater value from Landsat or other optical remote sensing platforms to map these land use patterns at moderate resolution. We conclude that similar population proxy covariates should be included in future studies attempting to characterize communal resource use when traditional spectral signatures do not adequately capture resource use intensity alone. This study provides insights into modeling resource use activity when leveraging both remotely sensed data and proxies for human habitation in heterogeneous, spectrally mixed rural land areas.
    Keywords remote sensing ; participatory mapping ; NTFP ; grazing ; random forest ; natural resources ; Science ; Q
    Subject code 333
    Language English
    Publishing date 2021-02-01T00:00:00Z
    Publisher MDPI AG
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  6. Article ; Online: Combining MALDI-TOF and genomics in the study of methicillin resistant and multidrug resistant Staphylococcus pseudintermedius in New Zealand

    Shahista Nisa / Clément Bercker / Anne C. Midwinter / Ian Bruce / Chris F. Graham / Pierre Venter / Allan Bell / Nigel P. French / Jackie Benschop / Karen M. Bailey / David A. Wilkinson

    Scientific Reports, Vol 9, Iss 1, Pp 1-

    2019  Volume 13

    Abstract: Abstract Staphylococcus pseudintermedius is an opportunistic and emerging zoonotic pathogen that primarily colonises the skin of dogs. Many common variants are methicillin resistant (MRSP) or multidrug resistant (MDR), and drug resistance is increasingly ...

    Abstract Abstract Staphylococcus pseudintermedius is an opportunistic and emerging zoonotic pathogen that primarily colonises the skin of dogs. Many common variants are methicillin resistant (MRSP) or multidrug resistant (MDR), and drug resistance is increasingly reported across the globe. In New Zealand, MRSP isolation remains rare in clinics. To pre-emptively inform diagnostic and antimicrobial stewardship practices, we examine isolates of S. pseudintermedius, MRSP and MDR-MRSP from New Zealand dogs using a combination of methodologies. Genetic and genomic data combined with antimicrobial susceptibility screening identify common drug-resistance profiles and their genetic determinants. We demonstrate that sensitive and specific species-level identification of S. pseudintermedius can be achieved using Bruker MALDI-TOF MS and, further, that this technique can be used to identify some common subtype variants, providing a level of categorical precision that falls somewhere between single-locus and multi-locus sequence typing. Comparative genomics analysis of global S. pseudintermedius data shows that MRSP moves frequently across the globe, but that horizontal gene transfer events resulting in the acquisition of the SCCmec cassette (responsible for beta-lactam antibiotic resistance) are infrequent. This suggests that biosecurity and surveillance in addition to antibiotic stewardship should play important roles in mitigating the risk of MRSP, especially in countries such as New Zealand where MRSP is still rare.
    Keywords Medicine ; R ; Science ; Q
    Subject code 360
    Language English
    Publishing date 2019-02-01T00:00:00Z
    Publisher Nature Publishing Group
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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