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

Authors :
Armayones Manuel
Vilaseca M
Cutillas Júlia
Fàbrega Jordi
Fernández Jorge
García Mei
Egea Natàlia
Pousada Modesta
Gómez-Zuñiga Beni
Pérez-Payarols Jaume
Artuch Rafael
Palau Francesc
Serrano Mercedes
Source :
Orphanet Journal of Rare Diseases, Vol 7, Iss 1, p 53 (2012)
Publication Year :
2012
Publisher :
BMC, 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.

Details

Language :
English
ISSN :
17501172
Volume :
7
Issue :
1
Database :
Directory of Open Access Journals
Journal :
Orphanet Journal of Rare Diseases
Publication Type :
Academic Journal
Accession number :
edsdoj.33292fc00bda4e598747c9a9a464e173
Document Type :
article
Full Text :
https://doi.org/10.1186/1750-1172-7-53