Orphanet J Rare Dis. 2012 Aug 21;7:53. doi: 10.1186/1750-1172-7-53.
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.
基于网络的干预措施对增强患者权能有效。Guiametabolica.org 是为遗传性代谢疾病患者及其家属设立的一个界面，旨在促进患者获取信息和与专业人员及其他患者的联系，提供一个发展支持小组的平台。Guiametabolica.org 被广泛认为是针对西班牙语遗传性代谢疾病患者及其家属的资源。初步评估显示，该网站可改变患者的习惯，减少其孤立感，并提高自我效能感。应将特定遗传性代谢疾病网站（特别是参与式网站）视为对更传统临床方法的补充。它们的贡献在于改善患者的整体健康状况，而不会干扰传统护理。
