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dc.contributor.authorBrunelli, Maria Victoria.
dc.contributor.authorRabhansl, Maria.
dc.contributor.authorDelacre, Clara.
dc.contributor.authorDankert, Maria.
dc.contributor.authorCuevillas, Maria.
dc.contributor.authorFrias, Catalina
dc.date.accessioned2020-09-23T20:38:11Z
dc.date.available2020-09-23T20:38:11Z
dc.date.issued2019-07-01
dc.identifier.citationJ. inborn errors metab. screen. vol.7 Porto Alegre 2019 Epub Mar 07, 2019en_US
dc.identifier.issn2326-4594
dc.identifier.urihttps://riu.austral.edu.ar/handle/123456789/954
dc.description.abstractABSTRACT 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.en_US
dc.language.isoenen_US
dc.publisherLatin American Society Inborn Errors and Neonatal Screeningen_US
dc.subjectEnzyme replacement therapyen_US
dc.subjectHomecareen_US
dc.subjectAdherenceen_US
dc.subjectGaucher diseaseen_US
dc.subjectFabry diseaseen_US
dc.subjectHunter syndromeen_US
dc.titleHome-Based Care for Patients with Lysosomal Storage Disease: Experiences in Argentinaen_US
dc.typeArticleen_US


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