To the best of our knowledge, this is the first interactive website focused on IMD in Spanish providing plain language information about a large number of IMDs and offering online consultations with medical/nutritional staff.
There is probably an excess of health information on the Internet , especially true for prevalent diseases. However, regarding rare diseases there is a lack of information, particularly easy-to-understand information. Guiametabolica.org offers relevant and up-to-date information in easy jargon that is, in fact, considered one of the most useful contents by our visitors. A sense of personal empowerment is often achieved by acquiring relevant information and knowledge, especially when information is acquired through direct access to relevant sources [5, 6]. Moreover, successful communication may be especially important for patients with chronic clinical conditions, such as IMD patients .
We believe that Guiametabolica.org role in some of the developing countries of Latin America, has to do with the limited resources that they have for health, particularly for rare diseases. We think that Guiametabolica.org can contribute to overcome the “health digital divide” providing users and professionals of developing countries useful information and tools to manage IMD diseases.
Users of Guiametabolica.org are very participative, probably due to the particular profile of our users; rather than e-patients, they are mainly e-caregivers (more than 80%). They are normally parents with a young child suffering an IMD, and then they are 30-to-50 years old, increasing their likelihood of being digital natives .
Furthermore, parents acting as e-caregivers could be more active and participative for two powerful reasons. The first one is related to strong filial affection, and the second one is due to the disconcerting situation of a child suffering a chronic illness. Caring for a child with chronic situation can become burdensome and can impact upon the physical and psychological health and, ultimately, the well-being of the caregivers . In the case of rare diseases, this situation may lead to uneasiness and usually generates numerous questions that need responses, making the e-caregiver more participative, involved and committed .
Our preliminary data show a decrease in feelings of loneliness among our users, as well as a reduced level of self-criticism; taken together, those results probably mean that the web is having an impact in the psychological and emotional health of the users.
We believe that specific IMD websites, especially online support groups, should be considered as a complement to more traditional clinical approaches. Guiametabolica.org contribution lies in the effect that it has on people’s general well-being while not interfering with traditional care.