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Título : Guiametabolica.org: empowerment through internet tools in inherited metabolic diseases
Autoría: 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
Otros: Universitat de Barcelona (UB)
Universitat Oberta de Catalunya (UOC)
Citación : 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
Resumen : 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.
Palabras clave : tratamiento dietético
e-paciente
errores innatos del metabolismo
enfermedades metabólicas hereditarias
potenciación del paciente
DOI: 10.1186/1750-1172-7-53
Tipo de documento: info:eu-repo/semantics/article
Versión del documento: info:eu-repo/semantics/publishedVersion
Fecha de publicación : 21-dic-2012
Licencia de publicación: http://creativecommons.org/licenses/by/3.0/es/  
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