• Login
    View Item 
    •   DSpace Home
    • Centro Académico de Salud (CAS)
    • Hospital Universitario Austral -HUA-
    • Investigación Aplicada
    • View Item
    •   DSpace Home
    • Centro Académico de Salud (CAS)
    • Hospital Universitario Austral -HUA-
    • Investigación Aplicada
    • View Item
    JavaScript is disabled for your browser. Some features of this site may not work without it.

    Browse

    All of DSpaceCommunities & CollectionsBy Issue DateAuthorsTitlesSubjectsThis CollectionBy Issue DateAuthorsTitlesSubjects

    My Account

    LoginRegister

    Statistics

    View Usage Statistics

    Home-Based Care for Patients with Lysosomal Storage Disease: Experiences in Argentina

    Thumbnail
    View/Open
    IA - Brunelli (200.4Kb)
    Date
    2019-07-01
    Author
    Brunelli, Maria Victoria.
    Rabhansl, Maria.
    Delacre, Clara.
    Dankert, Maria.
    Cuevillas, Maria.
    Frias, Catalina
    Metadata
    Show full item record
    Abstract
    ABSTRACT Enzyme replacement therapy (ERT) is a long term treatment for patients who suffer from lysosomal storage disease. A transversal descriptive study was conducted to evaluate advantages and disadvantages of a home-based care program for patients with Gaucher, Fabry and Mucopolysaccharidosis II (MPS II) diseases. A survey among patients and nurses involved in healthcare delivery at home was utilized for this study. The adherence rate was 92.9% over the study period. Eighty six point nine percent chose to carry out the treatment at home and 88.5% felt that their quality of life had improved. Additional advantages reported were: comfort (77%), treatment adjustment to daily activities (69%) and flexibility (58%). Disadvantages expressed were: lack of confidence with the health care provider at home (1.6%) and a shortage of disposable materials available (1.6%). The main benefits of home-based treatment were the high treatment adherence and the improvement in quality of life.
    URI
    https://riu.austral.edu.ar/handle/123456789/954
    Collections
    • Investigación Aplicada

    xmlui.dri2xhtml.structural.info-link
    Licencia Creative Commons
    xmlui.dri2xhtml.structural.contact-link1 - xmlui.dri2xhtml.structural.contact-link2
    xmlui.dri2xhtml.structural.info-link2
     

     


    xmlui.dri2xhtml.structural.info-link
    Licencia Creative Commons
    xmlui.dri2xhtml.structural.contact-link1 - xmlui.dri2xhtml.structural.contact-link2
    xmlui.dri2xhtml.structural.info-link2