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http://hdl.handle.net/10609/92217
Title: | Guiametabolica.org: empowerment through internet tools in inherited metabolic diseases |
Author: | Armayones, Manuel Vilaseca, M. Antonia Cutillas Ureba, Julia Fabrega Sabaté, Jordi Fernández García, Jorge Juan Garcia, Mei Egea Castillo, Natalia Pousada, Modesta Gómez Zúñiga, Benigna Pérez Payarols, Jaume Artuch Iriberri, Rafael Palau, Francesc Serrano, Mercedes |
Others: | Universitat de Barcelona (UB) Universitat Oberta de Catalunya (UOC) |
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 |
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. |
Keywords: | dietary treatment e-patient inborn errors of metabolism inherited metabolic diseases patient empowerment |
DOI: | 10.1186/1750-1172-7-53 |
Document type: | info:eu-repo/semantics/article |
Version: | info:eu-repo/semantics/publishedVersion |
Issue Date: | 21-Dec-2012 |
Publication license: | http://creativecommons.org/licenses/by/3.0/es/ |
Appears in Collections: | Articles Articles cientÍfics |
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guaiametabolica.pdf | 1,34 MB | Adobe PDF | View/Open |
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