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Open Access item Guiametabolica.org: empowerment through internet tools in inherited metabolic diseases

Authors:Armayones, Manuel
Vilaseca, M. A.
Cutillas, Júlia
Fàbrega, Jordi
Fernández, Jorge J.
García, Mei
Egea, Natàlia
Pousada, Modesta
Gómez-Zuñiga, Beni
Pérez-Payarols, Jaume
Artuch, Rafael
Palau Martínez, Francesc
Serrano, Mercedes
Issue Date:21-Aug-2012
Publisher:BioMed Central
Citation:Orphanet Journal of Rare Diseases. 7(1):53 (2012 )
Abstract: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 patient’s general well-being, without interfering with traditional care.
Appears in Collections:(IBV) Artículos

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