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

被引：0
作者：
Manuel Armayones
M Antònia Vilaseca
Júlia Cutillas
Jordi Fàbrega
Jorge Juan Fernández
Mei García
Natàlia Egea
Modesta Pousada
Beni Gómez-Zuñiga
Jaume Pérez-Payarols
Rafael Artuch
Francesc Palau
Mercedes Serrano
机构：
[1] Universitat Oberta de Catalunya,Psychology and Educational Sciences Deparment. Internet Interdisciplinary Institute (IN3) Psinet Research Group
[2] Universidad de Barcelona,Neurometabolic Unit, Hospital Sant Joan de Déu, Centre for Biomedical Network Research on Rare Diseases (CIBERER)
[3] Instituto de Salud Carlos III,Innovation, Research and Communication Departments
[4] Hospital Sant Joan de Déu,Instituto de Biomedicina de Valencia, CSIC, and Centre for Biomedical Network Research on Rare Diseases (CIBERER)
[5] Associació catalana de fenilcetonúria i altres trastorns del metabolisme,undefined
[6] Instituto de Salud Carlos III,undefined
来源：
Orphanet Journal of Rare Diseases | / 7卷
关键词：
Dietary treatment; E-patient; Inborn errors of metabolism; Inherited metabolic diseases; Patient empowerment;
D O I：
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摘要：
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.
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