Letter to the Editor
Guiametabolica.org: empowerment through internet tools in inherited metabolic diseases
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
Orphanet Journal of Rare Diseases 2012, 7:53 doi:10.1186/1750-1172-7-53
Published: 21 August 2012Abstract
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.
