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http://hdl.handle.net/10609/92217
Title: Guiametabolica.org: empowerment through internet tools in inherited metabolic diseases
Author: Armayones Ruiz, Manuel  
Vilaseca, M. Antonia
Cutillas Ureba, Julia
Fabrega Sabaté, Jordi
Fernandez, Jorge Juan
Garcia, Mei
Egea Castillo, Natalia
Pousada Fernández, Modesta  
Gómez Zúñiga, Benigna  
Pérez Payarols, Jaume
Artuch Iriberri, Rafael
Palau, Francesc
Serrano, Mercedes
Others: Universitat de Barcelona
Universitat Oberta de Catalunya (UOC)
Keywords: dietary treatment
e-patient
inborn errors of metabolism
inherited metabolic diseases
patient empowerment
Issue Date: 21-Dec-2012
Publisher: Orphanet Journal of Rare Diseases
Citation: Armayones Ruiz, M., Vilaseca, M.A., Cutillas, J., Fabrega, J., Fernandez, J.J., Garcia, M., Egea, N., Pousada Fernández, M., Gómez-Zúñiga, B., Pérez-Payarols, J., Artuch, Rafael, Palau, F. & Serrano, M. (2012). Guiametabolica.org: empowerment through internet tools in inherited metabolic diseases. Orphanet Journal of Rare Diseases, 7(1). doi: 10.1186/1750-1172-7-53
Also see: https://ojrd.biomedcentral.com/articles/10.1186/1750-1172-7-53
Abstract: Web-based interventions are effective on the patient empowerment. Guiametabolica.org constitutes an interface for people involved in inherited metabolic diseases, trying to facilitate access to information and contact with professionals and other patients, offering a platform to develop support groups. Guiametabolica.org is widely considered for Spanish-speaking patients and caregivers with inherited metabolic diseases. Preliminary evaluations show changes in their habits, decrease in their senses of isolation and improvement regarding self-efficacy. Specific inherited metabolic diseases websites, especially participative websites, should be considered as a complement to more traditional clinical approaches. Their contribution lies in patients general well-being, without interfering with traditional care.
Language: English
URI: http://hdl.handle.net/10609/92217
ISSN: 1750-1172MIAR
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