Home-Based Care for Patients with Lysosomal Storage Disease: Experiences in Argentina
J. inborn errors metab. screen
;
7: e20180002, 2019. tab
Article
Dans Anglais
|
LILACS-Express
| LILACS
| ID: biblio-1090980
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.
Texte intégral:
Disponible
Indice:
LILAS (Amériques)
Pays comme sujet:
Amérique du Sud
/
Argentine
langue:
Anglais
Texte intégral:
J. inborn errors metab. screen
Thème du journal:
Medicina Cl¡nica
/
Patologia
Année:
2019
Type:
Article
Pays d'affiliation:
Argentine
Institution/Pays d'affiliation:
Team Infusion/AR
/
Universidad Austral/AR
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