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

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

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Title: Home-Based Care for Patients with Lysosomal Storage Disease: Experiences in Argentina
Author: Brunelli, Maria.; Rabhansl, Maria.; Delacre, Clara.; Dankert, Maria.; Cuevillas, Maria.; Frias, Catalina
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
Date: 2019-07-01


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