Guiametabolica.org: empowerment through internet tools in inherited metabolic diseases.
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.
Manuel
M
Armayones
M Antònia
MA
Vilaseca
Júlia
J
Cutillas
Jordi
J
Fàbrega
Jorge Juan
JJ
Fernández
Mei
M
García
Natàlia
N
Egea
Modesta
M
Pousada
Beni
B
Gómez-Zuñiga
Jaume
J
Pérez-Payarols
Rafael
R
Artuch
Francesc
F
Palau
Mercedes
M
Serrano
D030342:Genetic Diseases, Inborn / Q000235:genetics* / Q000523:psychology; D006801:Humans; D020407:Internet; D008659:Metabolic Diseases / Q000235:genetics* / Q000523:psychology; D010353:Patient Education as Topic; D011209:Power, Psychological