Guiametabolica.org: empowerment through internet tools in inherited metabolic diseases
© Armayones et al.; licensee BioMed Central Ltd. 2012
Received: 30 March 2012
Accepted: 2 August 2012
Published: 21 August 2012
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.
Inherited metabolic diseases (IMD) are a very heterogeneous group of more than 500 rare diseases that mainly appear during childhood. The effectiveness of Web-based interventions on the patient empowerment, which is essential for patients with rare diseases for various reasons, has recently been proven [1–3]. Guiametabolica.org is a frequently-updated website in Spanish for people involved in IMD that facilitates access to information and contact with professionals and other similar patients, and offers a platform for developing support groups.
Through the comment field, Guiametabolica.org offers a chance to pose medical/nutritional questions to our clinical team, and to share experiences among families. The target population is estimated at about 62,000 people around the world, considering Spanish speaking people involved in IMD.
Aiming to evaluate our platform and to analyse the effect of the social network initiative in a public hospital setting and focalized in different rare diseases, we elaborated a questionnaire. E-patients and e-caregivers’ feelings and self-perceptions, as well as their developed skills and abilities, were analyzed as a measure of their empowerment process.
Guiametabolica.org in the internet
Typology of contributions
Kind of contribution
Medical/nutritional answers from nutritional/medical staff
Medical/nutritional answers from other users
Requests to contact other patients/caregivers
Other kinds of intervention
Users/ Fundación Alicia/ Consumer Eroski
Analysis of users’ questions (20th December 2011)
Comments related to Guiametabolica.org function as a support group
Requests to contact other patients/caregivers
Frequent situation: a family with a young child suffering an IMD with plenty of uncertainties about future, demanding contact with older patients or parents
Patients’ experiences and reflections, tips or recommendations.
All of them with a positive point of view
Questions about practical issues of the daily life
They include help for travelling, shopping, offers of special foods not needed anymore, information about government aids for chronic patients…
Messages exclusively to thank and express feelings
Messages of gratitude and feelings are also incorporated in the vast majority of comments
Comments regarding educational issues
Information about their IMD
Doubts about diagnostic process 5.8%
Doubts about treatments 5.4%
Biochemical and pathophysiological doubts 4.0%
Questions about clinical manifestations and evolution of disease 3.3%
Therapeutic options under investigation 2.2%
Questions about clinical/biochemical follow-up 1.4%
Doubts about other transitory or concomitant situations and their treatment
Doubts about dietary treatments and specific recipes.
Users’ evaluation: Usefulness of contents
Mean* (Standard Deviation)
Medical/nutritional responses to comments
Tips and recommendations
Comments from other users
Tales and games
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.
The authors want to thank Fundación Alicia and Consumer Eroski for their contribution of recipes and menus. Support was received from the Centre for Biomedical Network Research on Rare Diseases (CIBERER, ISCIII). We also want to thank the Asociación Catalana de Fenilcetonuria y Otros trastornos del metabolismo for their support.
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