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    Therapeutic trajectories of families with rare diseases in Chile from the perspectives of patients, carers, and healthcare workers: a qualitative study
    (Springer Science and Business Media LLC, 2025-02-25)
    CABIESES VALDES, BALTICA BEATRIZ  
    ;
    OBACH KING, ALEXANDRA ALICE  
    ;
    Antonia Roberts
    ;
    REPETTO LISBOA, MARIA GABRIELA  
    Background Rare diseases are conditions that have a low prevalence in the population and a high disease burden and are often chronic and progressive. International evidence concerning the experience of people and families living with rare diseases is scarce, leading to late and erroneous diagnoses, as well as non-specific treatments. This study explored the therapeutic trajectories of people and families living with rare diseases within Chile’s public and private healthcare systems from the perspective of patients, caregivers, and medical teams, including the initial symptoms, first consultation, testing, diagnosis, treatment, and follow-up. Methods A qualitative exploratory study was conducted through multiple case studies. Sixty participants were interviewed in person and/or virtually: patients (n = 16), caregivers (n = 22), healthcare workers (n = 20), and two patient organisation leaders. The material was analysed using thematic analysis. The project was approved by the Scientific Ethics Committee of Facultad de Medicina Clínica Alemana, Universidad del Desarrollo. Results After similar initial symptoms and first consultation, three main types of trajectories were identified: (i) the path taken by those who reach a diagnosis for a disease that has specific treatment available; (ii) the journey of those who reach a diagnosis for their health condition, but their disease does not have a specific treatment available; and (iii) the trajectory of those who have not reached a diagnosis and receive symptomatic treatments for symptoms. Conclusions The therapeutic trajectories of patients with rare symptoms are similar in terms of initial symptoms and first consultation. However, their paths diverge at the diagnostic stage, with diverse experiences related to these journeys, largely based on having a diagnosis and whether there is a specific treatment. Rare conditions in Chile requires further attention and urgent action that considers those who live with them and their families.
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    Excess burden of antibiotic-resistant bloodstream infections: evidence from a multicentre retrospective cohort study in Chile, 2018–2022
    (2024)
    Kasim Allel
    ;
    Anne Peters
    ;
    Hassan Haghparast-Bidgoli
    ;
    Maria Spencer-Sandino
    ;
    Jose Conejeros
    Scopus© Citations 2  4
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      2Scopus© Citations 4
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    The Unseen Global Burden of Disease
    (2020)
    Josh Wiedermann
    ;
    Theodore Klug
    ;
    Tekleweini Abhra
    ;
    Biniam Alemayehu
    ;
    Johanna Sembergman
    Scopus© Citations 3  1
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    Identification of clinical phenotypes of peripheral involvement in patients with spondyloarthritis, including psoriatic arthritis: a cluster analysis in the worldwide ASAS-PerSpA study
    (2021)
    Clementina López-Medina
    ;
    Sylvie Chevret
    ;
    Anna Molto
    ;
    Joachim Sieper
    ;
    Tuncay Duruöz
    <jats:sec><jats:title>Objective</jats:title><jats:p>To identify clusters of peripheral involvement according to the specific location of peripheral manifestations (ie, arthritis, enthesitis and dactylitis) in patients with spondyloarthritis (SpA) including psoriatic arthritis (PsA), and to evaluate whether these clusters correspond with the clinical diagnosis of a rheumatologist.</jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p>Cross-sectional study with 24 participating countries. Consecutive patients diagnosed by their rheumatologist as PsA, axial SpA or peripheral SpA were enrolled. Four different cluster analyses were conducted: one using information on the specific location from all the peripheral manifestations, and a cluster analysis for each peripheral manifestation, separately. Multiple correspondence analyses and k-means clustering methods were used. Distribution of peripheral manifestations and clinical characteristics were compared across the different clusters.</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>The different cluster analyses performed in the 4465 patients clearly distinguished a predominantly axial phenotype (cluster 1) and a predominantly peripheral phenotype (cluster 2). In the predominantly axial phenotype, hip involvement and lower limb large joint arthritis, heel enthesitis and lack of dactylitis were more prevalent. In the predominantly peripheral phenotype, different subgroups were distinguished based on the type and location of peripheral involvement: a predominantly involvement of upper versus lower limbs joints, a predominantly axial enthesitis versus peripheral enthesitis, and predominantly finger versus toe involvement in dactylitis. A poor agreement between the clusters and the rheumatologist‘s diagnosis as well as with the classification criteria was found.</jats:p></jats:sec><jats:sec><jats:title>Conclusion</jats:title><jats:p>These results suggest the presence of two main phenotypes (predominantly axial and predominantly peripheral) based on the presence and location of the peripheral manifestations.</jats:p></jats:sec>
      6Scopus© Citations 18
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    Stroke in Latin America: Systematic review of incidence, prevalence, and case-fatality in 1997–2021
    (2023)
    Carlos Delfino Carvalho Pinheiro
    ;
    Marilaura Nuñez
    ;
    Claudia Asenjo-Lobos
    ;
    RECULE GONZALEZ, FRANCISCA  
    ;
    Amy Riviotta
    <jats:sec><jats:title>Background:</jats:title><jats:p> Stroke is a major global cause of death and disability. Most strokes occur in populations of low-middle-income country (LMIC); therefore, the subsequent disease burden is greater than in populations of high-income countries. Few epidemiological data exist for stroke in Latin America, composed primarily of LMIC. </jats:p></jats:sec><jats:sec><jats:title>Aims:</jats:title><jats:p> To determine epidemiological measures of incidence, prevalence, and 1-month case-fatality for stroke in Latin America/Caribbean (LAC) during 1997–2021. </jats:p></jats:sec><jats:sec><jats:title>Summary of review:</jats:title><jats:p> A structured search was conducted to identify relevant references from MEDLINE, WOS, and LILACS databases for prospective observational and cross-sectional studies in LAC populations from January 1997 to December 2021. A total of 9242 records were screened and 12 selected for analysis, seven incidence studies and five prevalence studies. Case-fatality was reported in six articles. Sub-group analysis by age, sex, and income countries was performed. A narrative synthesis of the findings was performed. Meta-analysis was performed using random-effect model to obtain pooled estimates with 95% confidence intervals (CIs). Studies quality was assessed according to the risk of bias criteria described in the Joanna Briggs Institute’s guide. The overall crude annual incidence rate of first-ever stroke in LAC was 119.0 (95% CI = 95.9–142.1)/100,000 people (with high heterogeneity between studies ( I<jats:sup>2</jats:sup> = 98.1%)). The overall crude prevalence was 3060 (95% CI: 95.9–142.1)/100,000 people (with high heterogeneity between studies ( I<jats:sup>2</jats:sup> = 98.8%)). The overall case-fatality at 1 month after the first stroke was 21.1% (95% CI = 18.6–23.7) ( I<jats:sup>2</jats:sup> = 49.40%). </jats:p></jats:sec><jats:sec><jats:title>Conclusion:</jats:title><jats:p> This review contributes to our understanding regarding the burden caused by stroke in LAC. More studies with comparable designs are needed to generate reliable data and should include both standardized criteria, such as the World Health Organization clinical criteria and updated standard methods of case assurance, data collection, and reporting. </jats:p></jats:sec>
    Scopus© Citations 11  9
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    Dementia caregiving across Latin America and the Caribbean and brain health diplomacy
    (2021)
    Agustin Ibáñez
    ;
    Stefanie Danielle Pina-Escudero
    ;
    Katherine L Possin
    ;
    Yakeel T Quiroz
    ;
    Fernando Aguzzoli Peres
    Scopus© Citations 49  1
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    Uniting the global gastroenterology community to meet the challenge of climate change and non-recyclable waste
    (2021)
    Desmond Leddin
    ;
    M Bishr Omary
    ;
    Andrew Veitch
    ;
    Geoffrey Metz
    ;
    Naima Amrani
      19Scopus© Citations 22
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    Disease surveillance for the COVID-19 era: time for bold changes
    (2021)
    Oliver W Morgan
    ;
    AGUILERA SANHUEZA, XIMENA PAZ  
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    Andrea Ammon
    ;
    John Amuasi
    ;
    Ibrahima Socé Fall
      6Scopus© Citations 49