Open Access Letter to the Editor

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

Manuel Armayones1, M Antònia Vilaseca2, Júlia Cutillas3, Jordi Fàbrega3, Jorge Juan Fernández3, Mei García4, Natàlia Egea3, Modesta Pousada1, Beni Gómez-Zuñiga1, Jaume Pérez-Payarols3, Rafael Artuch2, Francesc Palau5 and Mercedes Serrano2*

Author Affiliations

1 Psychology and Educational Sciences Deparment. Internet Interdisciplinary Institute (IN3) Psinet Research Group, Universitat Oberta de Catalunya, Barcelona, Spain

2 Neurometabolic Unit, Hospital Sant Joan de Déu, Universidad de Barcelona, U-703 Barcelona, Spain and Centre for Biomedical Network Research on Rare Diseases (CIBERER), Instituto de Salud Carlos III, Barcelona, Spain

3 Innovation, Research and Communication Departments, Hospital Sant Joan de Déu, Barcelona, Spain

4 Associació catalana de fenilcetonúria i altres trastorns del metabolisme, Barcelona, Spain

5 Instituto de Biomedicina de Valencia, CSIC, and Centre for Biomedical Network Research on Rare Diseases (CIBERER), Instituto de Salud Carlos III, Valencia, Spain

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Orphanet Journal of Rare Diseases 2012, 7:53  doi:10.1186/1750-1172-7-53

Published: 21 August 2012

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.

Keywords:
Dietary treatment; E-patient; Inborn errors of metabolism; Inherited metabolic diseases; Patient empowerment