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1.
Ecol Appl ; 33(1): e2749, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36130875

RESUMO

Efforts to recruit, retain, and include Blacks, Indigenous, and People of Color (BIPOC) in environmental fields often fall short, in part due to limited conceptualizations of conservation and environment. At the core of this is the North American Model for Wildlife Conservation, an important approach to conservation and wildlife management that has influenced conservation globally. This model, however, is based upon a specific subset of worldviews, driven by Western and Eurocentric constructions of wilderness and nature. This model creates a narrow view of human-environment relationships and erases cultures and communities that explicitly view themselves as part of nature. We review the seven tenets of the North American Model for Wildlife Conservation, highlighting their limitations and exclusion of other models of environmental and natural resource management and alternative relationships with nature. In order to support long-term environmental engagement and culturally responsive research, 21st century environmental practitioners should shift our thinking around conservation to center counter narratives of BIPOC communities, scientists, and professionals as part of and meaningfully connected to nature. We argue that relying solely on the historically dominant language and ideologies at the core of the North American Model perpetuates disparities in environmental engagement and limits retention of BIPOC in environmental fields. We further highlight how shifts in understanding conservation and relationships to nature enables us to re-frame our work to support equitable, inclusive, and just conservation science and practice.


Assuntos
Animais Selvagens , Conservação dos Recursos Naturais , Animais , Estados Unidos , Humanos
2.
Conserv Biol ; 34(4): 891-902, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32406981

RESUMO

Interactions between humans and wildlife resulting in negative impacts are among the most pressing conservation challenges globally. In regions of smallholder livestock and crop production, interactions with wildlife can compromise human well-being and motivate negative sentiment and retaliation toward wildlife, undermining conservation goals. Although impacts may be unavoidable when human and wildlife land use overlap, scant large-scale human data exist quantifying the direct costs of wildlife to livelihoods. In a landscape of global importance for wildlife conservation in southern Africa, we quantified costs for people living with wildlife through a fundamental measure of human well-being, food security, and we tested whether existing livelihood strategies buffer certain households against crop depredation by wildlife, predominantly elephants. To do this, we estimated Bayesian multilevel statistical models based on multicounty household data (n = 711) and interpreted model results in the context of spatial data from participatory land-use mapping. Reported crop depredation by wildlife was widespread. Over half of the sample households were affected and household food security was reduced significantly (odds ratio 0.37 [0.22, 0.63]). The most food insecure households relied on gathered food sources and welfare programs. In the event of crop depredation by wildlife, these 2 livelihood sources buffered or reduced harmful effects of depredation. The presence of buffering strategies suggests a targeted compensation strategy could benefit the region's most vulnerable people. Such strategies should be combined with dynamic and spatially explicit land-use planning that may reduce the frequency of negative human-wildlife impacts. Quantifying and mitigating the human costs from wildlife are necessary steps in working toward human-wildlife coexistence.


Impactos de la Fauna y Medios de Subsistencia Vulnerables en unkl Paisaje de Conservación Transfronteriza Resumen Las interacciones entre los humanos y la fauna que resultan en impactos negativos se encuentran entre los desafíos más apremiantes para la conservación a nivel mundial. En las regiones de ganaderos y agricultores minifundistas, las interacciones con la fauna pueden poner en peligro el bienestar humano y motivar sentimientos negativos y represalias hacia la fauna, lo que debilita los objetivos de conservación. Aunque los impactos pueden evitarse cuando el uso de suelo por humanos y fauna se traslapa, existen pocos datos humanos a gran escala que cuantifiquen el costo directo de la fauna para los medios de subsistencia. Cuantificamos el costo para las personas que conviven con animales silvestres en un paisaje de importancia global para la conservación de fauna en el sur de África. La cuantificación fue realizada por medio de una medida fundamental de bienestar humano y seguridad alimentaria, y probamos si las estrategias existentes de subsistencia amortiguan a ciertos hogares ante la depredación de cultivos realizada por animales silvestres, predominantemente los elefantes. Para realizar esto, estimamos algunos modelos estadísticos bayesianos de niveles múltiples basados en los datos de hogares ubicados en múltiples condados (n = 711) e interpretamos los resultados de los modelos en el contexto de los datos espaciales a partir de un mapeo participativo de uso de suelo. La depredación de cultivos por animales silvestres fue reportada de manera generalizada. Más de la mitad de los hogares en la muestra estuvieron afectados y la seguridad alimenticia de los hogares se redujo significativamente (proporción de probabilidades 0.37 [0.22, 0.63]). Los hogares con la menor seguridad alimentaria dependían de fuentes de recolección de alimentos y programas de bienestar. En el evento de la depredación por fauna de los cultivos, estas dos fuentes de subsistencia amortiguaron o redujeron los efectos dañinos de la depredación. La presencia de las estrategias de amortiguamiento sugiere que una estrategia de compensación enfocada podría beneficiar a las personas más vulnerables de la región. Dichas estrategias deberían estar combinadas con la planeación del uso de suelo dinámica y espacialmente explícita, la cual podría reducir la frecuencia de los impactos negativos entre los humanos y la fauna. La cuantificación y mitificación del costo humano a partir de la fauna son pasos necesarios en el camino hacia la coexistencia entre los humanos y la fauna.


Assuntos
Conservação dos Recursos Naturais , Elefantes , África Austral , Animais , Animais Selvagens , Teorema de Bayes , Humanos
3.
Paediatr Child Health ; 24(1): e26-e32, 2019 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-30792606

RESUMO

OBJECTIVE: This qualitative study explored attitudes toward weight management and knowledge of healthy, active living among paediatric patients referred to a weight management program. The objective of this study was to determine the emotional state and attitudes of patients entering into a paediatric weight management program. METHODS: Study participants (aged 7 to 17 years old) were recruited during clinic orientation. Semistructured interviews were conducted, audiotaped and transcribed verbatim. Qualitative content analysis generated a thematic coding scheme, identifying concepts and linkages in the data. Study rigour was achieved collaboratively through an audit trail, and data triangulation. RESULTS: Fifteen patients (median age 11 years) consented to interviews. Three recurring themes emerged: emotions, motivation and learning. A total of nine subthemes were identified. Four key spheres of influence (family, peers, school and health care providers) affected the patient's outlook on obesity positively by providing support or negatively by adversely influencing their emotions and motivation. The level of individual motivation to engage in the weight management program varied. A positive outlook toward learning about obesity from school officials and health care providers emerged. CONCLUSIONS: This study provided insight regarding paediatric attitudes related to entering a weight management program. The negative emotional state and sometimes fear of the program expressed should be considered by the referring physician and by clinicians in weight management programs engaging in their care.

4.
Plant Dis ; 102(7): 1218-1233, 2018 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-30673582

RESUMO

International trade and travel are the driving forces behind the spread of invasive plant pathogens around the world, and human-mediated movement of plants and plant products is now generally accepted as the primary mode of their introduction, resulting in huge disturbance to ecosystems and severe socio-economic impact. These problems are exacerbated under the present conditions of rapid climatic change. We report an overview of the Canadian research activities on Phytophthora ramorum. Since the first discovery and subsequent eradication of P. ramorum on infected ornamentals in nurseries in Vancouver, British Columbia, in 2003, a research team of Canadian government scientists representing the Canadian Forest Service, Canadian Food Inspection Agency, and Agriculture and Agri-Food Canada worked together over a 10-year period and have significantly contributed to many aspects of research and risk assessment on this pathogen. The overall objectives of the Canadian research efforts were to gain a better understanding of the molecular diagnostics of P. ramorum, its biology, host-pathogen interactions, and management options. With this information, it was possible to develop pest risk assessments and evaluate the environmental and economic impact and future research needs and challenges relevant to P. ramorum and other emerging forest Phytophthora spp.


Assuntos
Phytophthora/fisiologia , Doenças das Plantas/microbiologia , Pesquisa/estatística & dados numéricos , Árvores/microbiologia , Antibiose/fisiologia , Canadá , Fungicidas Industriais/farmacologia , Geografia , Interações Hospedeiro-Patógeno/efeitos dos fármacos , Phytophthora/efeitos dos fármacos , Doenças das Plantas/economia , Pesquisa/economia , Árvores/classificação
5.
Anal Chem ; 89(17): 9091-9099, 2017 09 05.
Artigo em Inglês | MEDLINE | ID: mdl-28805059

RESUMO

The specific interaction between a ligand and a protein is a key component in minimizing off-target effects in drug discovery. Investigating these interactions with membrane protein receptors can be quite challenging. In this report, we show how spectral variance observed in surface-enhanced Raman scattering (SERS) and tip-enhanced Raman scattering (TERS) can be correlated with ligand specificity in affinity-based assays. Variations in the enhanced Raman spectra of three peptide ligands (i.e., cyclic-RGDFC, cyclic-isoDGRFC, and CisoDGRC), which have different binding affinity to αvß3 integrin, are reported from isolated proteins and from receptors in intact cancer cell membranes. The SERS signal from the purified proteins provides basis spectra to analyze the signals in cells. Differences in the spectral variance within the SERS and TERS data for each ligand indicate larger variance for nonspecific ligand-receptor interactions. The SERS and TERS results are correlated with single particle tracking experiments of the ligand-functionalized nanoparticles with purified receptors on glass surfaces and living cells. These results demonstrate the ability to elucidate protein-ligand recognition using the observed vibrational spectra and provide perspective on binding specificity for small-molecule ligands in intact cell membranes, demonstrating a new approach for investigating drug specificity.


Assuntos
Integrina alfaVbeta3/química , Análise Espectral Raman/métodos , Linhagem Celular Tumoral , Membrana Celular/química , Ouro/química , Humanos , Ligantes , Nanopartículas Metálicas/química , Ligação Proteica
6.
Plant Physiol ; 170(1): 57-73, 2016 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-26527656

RESUMO

The C4 pathway is a highly complex trait that increases photosynthetic efficiency in more than 60 plant lineages. Although the majority of C4 plants occupy disturbed, arid, and nutrient-poor habitats, some grow in high-nutrient, waterlogged conditions. One such example is Echinochloa glabrescens, which is an aggressive weed of rice paddies. We generated comprehensive transcriptome datasets for C4 E. glabrescens and C3 rice to identify genes associated with adaption to waterlogged, nutrient-replete conditions, but also used the data to better understand how C4 photosynthesis operates in these conditions. Leaves of E. glabrescens exhibited classical Kranz anatomy with lightly lobed mesophyll cells having low chloroplast coverage. As with rice and other hygrophytic C3 species, leaves of E. glabrescens accumulated a chloroplastic phosphoenolpyruvate carboxylase protein, albeit at reduced amounts relative to rice. The arid-grown species Setaria italica (C4) and Brachypodium distachyon (C3) were also found to accumulate chloroplastic phosphoenolpyruvate carboxylase. We identified a molecular signature associated with C4 photosynthesis in nutrient-replete, waterlogged conditions that is highly similar to those previously reported from C4 plants that grow in more arid conditions. We also identified a cohort of genes that have been subjected to a selective sweep associated with growth in paddy conditions. Overall, this approach highlights the value of using wild species such as weeds to identify adaptions to specific conditions associated with high-yielding crops in agriculture.


Assuntos
Echinochloa/fisiologia , Oryza/genética , Fotossíntese/fisiologia , Plantas Daninhas/fisiologia , Cloroplastos , Produtos Agrícolas/anatomia & histologia , Produtos Agrícolas/genética , Produtos Agrícolas/fisiologia , Echinochloa/anatomia & histologia , Echinochloa/genética , Regulação da Expressão Gênica de Plantas , Oryza/fisiologia , Fosfoenolpiruvato Carboxilase/metabolismo , Células Vegetais/ultraestrutura , Proteínas de Plantas/genética , Proteínas de Plantas/metabolismo , Plantas Daninhas/anatomia & histologia , Plantas Daninhas/genética , Transcriptoma
7.
Int J Health Care Qual Assur ; 30(6): 539-544, 2017 Jul 10.
Artigo em Inglês | MEDLINE | ID: mdl-28714831

RESUMO

Purpose Nutrition plays a key role in the recovery of pediatric trauma patients. A catabolic state in trauma patients may hinder recovery and inadequate nutrition may increase morbidity, mortality and length of hospital stay. The purpose of this paper is to review the current nutrition support practices for pediatric trauma patients at McMaster Children's Hospital (MCH), describe patient demographics and identify areas to improve the quality of patient care. Design/methodology/approach A retrospective chart review was conducted on pediatric trauma patients (age<18 years) identified through the trauma registry of MCH. Pediatric trauma patients admitted from January 2010 to March 2014 with an Injury Severity Score (ISS)=12 and a hospitalization of =24 hours were included. Findings In total, 130 patients were included in this study, 61.1 percent male, median age ten years (range: 0-17 years) and median ISS of 17 (range: 12-50). Blunt trauma accounted for 97.7 percent of patients admitted and 73.3 percent had trauma team activation. In total, 93 patients (71.5 percent) had ICU stays. The median time to feed was 29 hours (interquartile range: 12.5-43 hours) from the time of admission. An increased hospital length of stay was associated with longer time to initiation of nutrition support, a higher ISS and greater number of surgeries ( p<0.05). Originality/value Local nutritional support practices for pediatric trauma patients correspond with recommended principles of early feeding and preferential enteral nutrition. Harmonization of paper-based and electronic data collection is recommended to ensure that prescribed nutritional support is being delivered and nutritional needs of pediatric trauma patients are being met.


Assuntos
Hospitais Pediátricos/organização & administração , Apoio Nutricional/métodos , Ferimentos e Lesões/dietoterapia , Adolescente , Criança , Pré-Escolar , Feminino , Hospitais Pediátricos/normas , Humanos , Lactente , Recém-Nascido , Escala de Gravidade do Ferimento , Masculino , Apoio Nutricional/normas , Guias de Prática Clínica como Assunto , Melhoria de Qualidade , Estudos Retrospectivos
8.
Emerg Infect Dis ; 22(12): 2128-2131, 2016 12.
Artigo em Inglês | MEDLINE | ID: mdl-27869612

RESUMO

Baylisascaris procyonis roundworms can cause potentially fatal neural larva migrans in many species, including humans. However, the clinical spectrum of baylisascariasis is not completely understood. We tested 347 asymptomatic adult wildlife rehabilitators for B. procyonis antibodies; 24 were positive, suggesting that subclinical baylisascariasis is occurring among this population.


Assuntos
Animais Selvagens , Infecções por Ascaridida/epidemiologia , Infecções por Ascaridida/transmissão , Ascaridoidea , Zoonoses , Animais , Anticorpos Antiprotozoários/sangue , Anticorpos Antiprotozoários/imunologia , Infecções por Ascaridida/história , Infecções por Ascaridida/parasitologia , Ascaridoidea/imunologia , Canadá/epidemiologia , Feminino , Geografia Médica , História do Século XXI , Humanos , Imunoglobulina G/sangue , Imunoglobulina G/imunologia , Masculino , Estudos Soroepidemiológicos , Estados Unidos/epidemiologia
9.
J Exp Bot ; 67(9): 2901-11, 2016 04.
Artigo em Inglês | MEDLINE | ID: mdl-27053722

RESUMO

Measurements of amino acids in the guttation fluid and in the xylem exudates of cut leaves from intact plants provide evidence of the remarkable efficiency with which these nitrogenous compounds are reabsorbed from the xylem sap. This could be achieved by mechanisms involving intercellular transport and/or metabolism. Developmental changes in transcripts and protein showed that transcripts for phosphoenolpyruvate carboxykinase (PEPCK) increased from the base to the leaf tip, and were markedly increased by supplying asparagine. Supplying amino acids also increased the amounts of protein of PEPCK and, to a lesser extent, of pyruvate, Pi dikinase. PEPCK is present in the hydathodes, stomata and vascular parenchyma of rice leaves. Evidence for the role of PEPCK was obtained by using 3-mercaptopicolinic acid (MPA), a specific inhibitor of PEPCK, and by using an activation-tagged rice line that had an increase in PEPCK activity, to show that activation of PEPCK resulted in a decrease in N in the guttation fluid and that treatment by MPA resulted in an increase in amino acids in the guttation fluid and xylem sap towards the leaf tip. Furthermore, increasing PEPCK activity decreased the amount of guttation fluid, whereas decreasing PEPCK activity increased the amount of xylem sap or guttation fluid towards the leaf tip. The findings suggest the following hypotheses: (i) both metabolism and transport are involved in xylem recycling and (ii) excess N is the signal involved in modulating xylem hydraulics, perhaps via nutrient regulation of water-transporting aquaporins. Water relations and vascular metabolism and transport are thus intimately linked.


Assuntos
Nitrogênio/metabolismo , Oryza/metabolismo , Folhas de Planta/metabolismo , Xilema/metabolismo , Aminoácidos/metabolismo , Transporte Biológico , Fosfoenolpiruvato Carboxiquinase (ATP)/metabolismo , Água/metabolismo , Xilema/fisiologia
10.
Behav Sci Law ; 34(2-3): 308-20, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-27009396

RESUMO

The present study evaluates data from 116 forensic inpatients who underwent violent risk assessments, which included the Historical, Clinical, Risk-20 (HCR-20), from 2006 to 2013 as part of an opportunity to be conditionally discharged from state forensic facilities. Of the 116 inpatients, 58 were never released, 39 were released and returned to a hospital, and 19 were released and never returned. Results from analyses of variance and multinomial logistic regression found the risk management (R) scale of the HCR-20 successfully predicted group membership in that higher scores were associated with a greater likelihood of not being released from a forensic facility or returning to a forensic facility after release. The results of this study indicate that clinicians should consider community-based risk variables when evaluating forensic patients for potential return to the community. This research demonstrates that clinicians failing to fully consider dynamic risk factors associated with community integration jeopardize the quality and thoroughness of their violence risk assessment with regards to readiness for release. Copyright © 2016 John Wiley & Sons, Ltd.


Assuntos
Psiquiatria Legal/métodos , Medição de Risco/métodos , Gestão de Riscos/métodos , Adulto , Agressão , Feminino , Psiquiatria Legal/legislação & jurisprudência , Georgia , Humanos , Pacientes Internados , Masculino , Pessoa de Meia-Idade , Medição de Risco/legislação & jurisprudência , Fatores de Risco , Gestão de Riscos/legislação & jurisprudência , Resultado do Tratamento , Violência/legislação & jurisprudência , Violência/psicologia
11.
PLoS One ; 19(1): e0295080, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38241270

RESUMO

The importance of patient centricity and keeping the patient at the heart of research design is now well recognised within the healthcare community. The involvement of patient, caregiver and clinician representatives in the study design process may help researchers to achieve this goal and to ensure robust and meaningful data generation. Real-world data collection allows for a more flexible and patient-centred research approach for gaining important insights into the experience of disease and treatments, which is acutely relevant for rare diseases where knowledge about the disease is more likely to be limited. Here, we describe a practical example of a patient-centric, multi-stakeholder approach that led to the co-design of a prospective observational study investigating the lived experience of adolescents with the rare disease, X-linked hypophosphataemia. Specifically, we describe how the knowledge and expertise of a diverse research team, which included expert physicians, research and technology specialists, patients and caregivers, were applied in order to identify the relevant research questions and to ensure the robustness of the study design and its appropriateness to the population of interest within the context of the current clinical landscape. We also demonstrate how a structured patient engagement exercise was key to informing the selection of appropriate outcome measures, data sources, timing of data collection, and to assessing the feasibility and acceptability of the proposed data collection approach.


Assuntos
Raquitismo Hipofosfatêmico Familiar , Médicos , Humanos , Adolescente , Estudos Prospectivos , Atenção à Saúde , Cuidadores , Estudos Observacionais como Assunto
12.
Plant J ; 69(4): 679-88, 2012 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-22007864

RESUMO

Malate, along with potassium and chloride ions, is an important solute for maintaining turgor pressure during stomatal opening. Although malate is exported from guard cells during stomatal closure, there is controversy as to whether malate is also metabolised. We provide evidence that phosphoenolpyruvate carboxykinase (PEPCK), an enzyme involved in malate metabolism and gluconeogenesis, is necessary for full stomatal closure in the dark. Analysis of the Arabidopsis PCK1 gene promoter indicated that this PEPCK isoform is specifically expressed in guard cells and trichomes of the leaf. Spatially distinct promoter elements were found to be required for post-germinative, vascular expression and guard cell/trichome expression of PCK1. We show that pck1 mutant plants have reduced drought tolerance, and show increased stomatal conductance and wider stomatal apertures compared with the wild type. During light-dark transients the PEPCK mutant plants show both increased overall stomatal conductance and less responsiveness of the stomata to darkness than the wild type, indicating that stomata get 'jammed' in the open position. These results show that malate metabolism is important during dark-induced stomatal closure and that PEPCK is involved in this process.


Assuntos
Arabidopsis/enzimologia , Malatos/metabolismo , Fosfoenolpiruvato Carboxiquinase (ATP)/genética , Estômatos de Plantas/fisiologia , Ácido Abscísico/metabolismo , Arabidopsis/genética , Arabidopsis/fisiologia , Proteínas de Arabidopsis/genética , Proteínas de Arabidopsis/metabolismo , Escuridão , Secas , Germinação , Gluconeogênese , Isoenzimas/genética , Isoenzimas/metabolismo , Luz , Mutação , Especificidade de Órgãos , Fosfoenolpiruvato Carboxiquinase (ATP)/metabolismo , Reguladores de Crescimento de Plantas/metabolismo , Folhas de Planta/enzimologia , Folhas de Planta/genética , Folhas de Planta/fisiologia , Brotos de Planta/enzimologia , Brotos de Planta/genética , Brotos de Planta/fisiologia , Estômatos de Plantas/enzimologia , Estômatos de Plantas/genética , Regiões Promotoras Genéticas/genética , Plântula/enzimologia , Plântula/genética , Plântula/fisiologia , Água/metabolismo
13.
Cerebellum ; 12(6): 870-81, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-23780826

RESUMO

The Acp2 gene encodes lysosomal acid phosphatase 2 (ACP2), an isoenzyme that hydrolyzes orthophosphoric monoesters to alcohol and phosphate. Mutations in this gene compromise lysosomal function and cause acid phosphatase deficiency. Loss of Acp2 in the brain causes defects in the cerebellum. Here, we performed an in-depth protein expression analysis in the mouse cerebellum to understand how Acp2 controls cellular function in the developing and adult brain. We have found that during development, ACP2 expression marks the caudal midbrain and cerebellum, two regions that are linked by multiple signaling mechanisms during embryogenesis. By around P8, ACP2 was localized predominantly to the somata of Purkinje cells, the principal neurons of the cerebellar cortex. During the second postnatal week, we found that ACP2 expression expanded into the dendrites and axon terminals of Purkinje cells. However, at 2 weeks of age, only a subset of Purkinje cells strongly express ACP2. Further expression analyses revealed that in the mature cerebellum, ACP2 expression divided Purkinje cells into a pattern of molecular zones that are associated with the functional topography of sensory-motor circuitry. These data suggest that ACP2 expression is dynamically regulated during development, and in the adult, it may function within a complex architecture that is linked to cerebellar modular organization.


Assuntos
Fosfatase Ácida/genética , Fosfatase Ácida/metabolismo , Córtex Cerebelar/citologia , Córtex Cerebelar/metabolismo , Regulação da Expressão Gênica no Desenvolvimento/fisiologia , Neurônios/fisiologia , Potenciais de Ação/fisiologia , Fatores Etários , Animais , Animais Recém-Nascidos , Calbindinas/metabolismo , Células Cultivadas , Córtex Cerebelar/crescimento & desenvolvimento , Embrião de Mamíferos , Técnicas In Vitro , Camundongos , Camundongos Endogâmicos C57BL , Proteínas do Tecido Nervoso/metabolismo
14.
Orphanet J Rare Dis ; 18(1): 158, 2023 Jun 22.
Artigo em Inglês | MEDLINE | ID: mdl-37349760

RESUMO

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 nature, but many patients do not have access to multiple specialties due to geographical or insurance barriers. Because some patients cannot be treated in Centers of Excellence, easy access to reliable and up-to-date information is important to empower physicians, patients, and their caregivers in managing the condition, along with general community outreach programs.


Assuntos
Degeneração Hepatolenticular , Médicos , Adolescente , Humanos , Degeneração Hepatolenticular/diagnóstico , Degeneração Hepatolenticular/terapia , Cobre/metabolismo , Doenças Raras/tratamento farmacológico , Zinco/uso terapêutico , Atenção
15.
Acta Psychol (Amst) ; 240: 104035, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37734244

RESUMO

INTRODUCTION: Major depressive disorder (MDD) is a common, frequently recurrent condition associated with decreased well-being and increased healthcare-related costs. Mixed-methods research provides multiple ways of illustrating the phenomenon to better understand patient experience, including where treatment is not working, referred to here as treatment-resistant depression (TRD). METHODS: A mixed-methods study investigated the experiences of people with symptomatic MDD, symptomatic TRD or TRD in remission, surveying 148 adults recruited from English clinical sites to measure symptom severity (Patient Health Questionnaire-9 [PHQ-9]), HRQoL (EQ-5D-5L/World Health Organisation Brief Assessment of QoL [WHOQOL-BREF]) and work productivity/activity impairment (WPAI:D). Interviews with 26 survey respondents were analysed thematically. Integrated datasets explored areas of convergence and divergence, with concepts mapped against the EQ-5D-5L. RESULTS: Qualitative data explained low WHOQOL-BREF domain scores and the interrelation of psychological, emotional, cognitive and physical difficulties. Tiredness, lack of energy and motivation impacted daily activities, socialising and career goals. Low work performance scores were explained by poor concentration, decision-making and motivation. Participants also described the influence of social support and housing insecurity. Only 19 % of HRQoL qualitative codes mapped to the EQ-5D-5L. Themes dominant in patients with TRD were inability to cope, self-care challenges, dissatisfaction with mental health services and treatment pessimism. LIMITATIONS: Limited data collected on people with TRD in remission. CONCLUSIONS: The EQ-5D-5L and WPAI:D likely underestimate how depression impacts the HRQoL and work of people with MDD or TRD. Qualitative data suggest increased distress for people with TRD compared to those with MDD. Clinical management and treatment access decisions should consider the broader impacts of depression and environmental factors affecting the patient's experience.


Assuntos
Transtorno Depressivo Maior , Qualidade de Vida , Adulto , Humanos , Qualidade de Vida/psicologia , Depressão , Transtorno Depressivo Maior/psicologia , Inquéritos e Questionários , Inglaterra
16.
J Pediatr Surg ; 57(5): 903-907, 2022 May.
Artigo em Inglês | MEDLINE | ID: mdl-35078593

RESUMO

BACKGROUND: Pediatric trauma patients may benefit from a balanced transfusion strategy, however, determining when to activate massive transfusion protocols remains uncertain. The purpose of this study was to explore whether certain scoring systems can predict the need for large volume transfusion. METHODS: We conducted a retrospective review of pediatric trauma patients who presented to our center and required a transfusion of packed red blood cells. Baseline laboratory and clinical data were used to calculate Trauma Associated Severe Hemorrhage (TASH) score and a previously reported composite of acidosis and coagulopathy. RESULTS: We identified 518 pediatric trauma patients who presented to our center between January 1, 2013 and December 31, 2018. These patients were less than 18 years of age (mean 9.6 years) and had an injury severity score ranging from 1 to 50 (mean 11.3). Forty-three patients (8.3%) received a transfusion within 24 hours of presentation, ranging from 4 to 139 mL/kg of packed red blood cells (mean 23.1 mL/kg). Transfusion volume was associated with acidosis and coagulopathy scores (r = 0.37, p = 0.033) and international normalized ratio (INR) (r = 0.34, p = 0.03) but not TASH (p = 0.72). Patients with INR≥1.3 received a higher mean volume of packed red cells compared to those with normal values (34 versus 18 mL/kg, p = 0.046). CONCLUSION: Pediatric trauma patients who undergo transfusion of packed red blood cells are likely to require large volume transfusion if their baseline INR is ≥1.3. These patients may benefit from a balanced transfusion strategy, such as utilization of massive transfusion protocols or whole blood.


Assuntos
Acidose , Transtornos da Coagulação Sanguínea , Ferimentos e Lesões , Acidose/etiologia , Acidose/terapia , Transtornos da Coagulação Sanguínea/etiologia , Transtornos da Coagulação Sanguínea/terapia , Transfusão de Sangue , Criança , Humanos , Escala de Gravidade do Ferimento , Coeficiente Internacional Normatizado , Estudos Retrospectivos , Centros de Traumatologia , Ferimentos e Lesões/complicações , Ferimentos e Lesões/terapia
17.
J Endocr Soc ; 5(8): bvab070, 2021 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-34258488

RESUMO

CONTEXT: X-linked hypophosphatemia (XLH) is a rare, genetic phosphate-wasting disease resulting in bone, muscular, and dental problems, beginning in childhood and increasing in adulthood. OBJECTIVE: This qualitative analysis aimed to explore patient-reported symptoms, complications, and experiences of XLH over the life-course, using data from a large multinational online survey. METHODS: Responses to 2 open-ended questions from 209 adults and 86 children/adolescents (proxy report) with self-reported XLH were analyzed in 8 age groups. Two researchers independently coded and analyzed the responses, using thematic analysis, with differences settled among a multidisciplinary group. Six themes were identified, with age subgroup analysis conducted on the 3 most common, according to coding frequency. RESULTS: Within theme 1, "Clinical Signs and Symptoms of XLH," "Pain" was a dominant subtheme across the life-course, but "Skeletal Pathology" dominated the responses of children/adolescents. Within theme 2, "Impacts of Clinical Signs and Symptoms," interference with "Physical Exertion" and "Emotional Wellbeing" (comprising depression/anxiety in adults and lack of self-esteem in children/adolescents) was reported across all ages. For theme 3, "Negative Treatment Experiences," "Medication" was problematic for children, with adults reporting lack of "Access to Appropriate Treatment." Three further themes were identified: "Resilience," "Positive Treatment Experiences," and "Information Needs." CONCLUSION: The multiple burdens imposed on people with XLH throughout their lifetime encompassed the physical, emotional, and social, although the most challenging symptoms or complications differed between ages. Burden was further exacerbated by adults' lack of access to appropriate treatment, illustrating the need for age-appropriate multidisciplinary care.

18.
Ambio ; 50(7): 1351-1363, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-33538986

RESUMO

In biodiversity hotspots, there is often tension between human needs and conservation, exacerbated when protected areas prevent access to natural resources. Forest-dependent people may compensate for exclusion by managing unprotected forests or cultivating planted woodlots. Outside Bwindi Impenetrable National Park in Uganda, household wood product needs are high and population growth puts pressure on the environment. We investigated the role of privately and collectively managed woodlots in provisioning wood products and supporting local livelihoods. We found that households relied heavily on woodlots for daily needs and as resources during time of need. We also found that locally relevant social institutions, called stretcher groups, played a role in the management of woodlots, providing shared community resources. Privately and collectively owned woodlots support local livelihoods and wood product needs in the region. Long-term management of forests in Uganda should consider the value of woodlots and the mechanisms required to support them.


Assuntos
Conservação dos Recursos Naturais , Recursos Naturais , Biodiversidade , Florestas , Humanos , Uganda
19.
Hematology ; 26(1): 465-472, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34238132

RESUMO

OBJECTIVES: Immune-mediated thrombotic thrombocytopenic purpura (iTTP) is an ultra-rare life-threatening thrombotic microangiopathy affecting adults with unpredictable disease onset and acute presentation. This study aimed to describe the health-related quality of life (HRQoL), cognitive functioning and work productivity of survivors following acute episode(s) of iTTP in the United Kingdom (UK). METHODS: An online survey was developed in collaboration with the TTP Network. Descriptive statistics were calculated for the health questionnaire Short Form Survey-36 Version 2 (SF-36v2), the Hospital Anxiety and Depression Score (HADS), the PROMIS Cognitive Function Abilities Subset - Short Form 6a (PROMIS CFAS - SF6a), and the Work Productivity and Activity Index: Specific Health Problem (WPAI-SHP), along with several iTTP-specific bespoke questions. RESULTS: Fifty participants were recruited between July-November 2019. The mean (standard deviation [SD]) standardized SF-36v2 physical and mental component scores were 42.16 (9.59) and 33.61 (12.34), lower than population norms. The mean (SD) standardized PROMIS CFAS - SF6a score was 39.69 (7.86), lower than population norms. HADS mean (SD) scores of 12.18 (3.14) and 11.78 (2.36) indicated moderate levels of anxiety and depression, respectively. Of those employed (58%), approximately 42.73% of participants reported work productivity loss due to their iTTP. Participants also reported experiencing flashbacks, fatigue interference in family, social and intimate life, and fears of relapse. DISCUSSION AND CONCLUSION: Regardless of recency of the last acute episode, participant scores signified impairments in all domains. Remission from an acute episode of disease does not signify the conclusion of care, but rather the requirement for long-term healthcare particularly focused on psychological support.


Assuntos
Púrpura Trombocitopênica Idiopática/epidemiologia , Púrpura Trombocitopênica Trombótica/epidemiologia , Qualidade de Vida , Doença Aguda , Adulto , Idoso , Ansiedade/etiologia , Cognição , Estudos Transversais , Depressão/etiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Púrpura Trombocitopênica Idiopática/complicações , Púrpura Trombocitopênica Idiopática/fisiopatologia , Púrpura Trombocitopênica Idiopática/psicologia , Púrpura Trombocitopênica Trombótica/complicações , Púrpura Trombocitopênica Trombótica/fisiopatologia , Púrpura Trombocitopênica Trombótica/psicologia , Reino Unido/epidemiologia , Adulto Jovem
20.
Curr Biol ; 31(22): 5077-5085.e6, 2021 11 22.
Artigo em Inglês | MEDLINE | ID: mdl-34562383

RESUMO

High-level policy debates surrounding elephant management often dominate global conservation headlines, yet realities for people living with wildlife are not adequately incorporated into policymaking or evident in related discourse.1,2 Human health and livelihoods can be severely impacted by wildlife and indirectly by policy outcomes.3 In landscapes where growing human and elephant (Loxodonta spp. and Elephas maximus) populations compete over limited resources, human-elephant conflict causes crop loss, human injury and death, and retaliatory killing of wildlife.4-6 Across Africa, these problems may be increasingly compounded by climate change, which intensifies resource competition and food insecurity.6-9 Here, we examine how human-wildlife impacts interact with climate change and household food insecurity across the Kavango-Zambezi Transfrontier Conservation Area, the world's largest terrestrial transboundary conservation area, spanning five African nations. We use hierarchical Bayesian statistical models to analyze multi-country household data together with longitudinal satellite-based climate measures relevant to rainfed agriculture. We find that crop depredation by wildlife, primarily elephants, impacts 58% of sampled households annually and is associated with significant increases in food insecurity. These wildlife impacts compound effects of changing climate on food insecurity, most notably observed as a 5-day shortening of the rainy season per 10 years across the data record (1981-2018). To advance sustainability goals, global conservation policy must better integrate empirical evidence on the challenges of human-wildlife coexistence into longer term strategies at transboundary scales, specifically in the context of climate change.3,9-11.


Assuntos
Animais Selvagens , Elefantes , Animais , Teorema de Bayes , Mudança Climática , Conservação dos Recursos Naturais , Humanos
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