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

  • Manuel Armayones1,

    Affiliated with

    • M Antònia Vilaseca2,

      Affiliated with

      • Júlia Cutillas3,

        Affiliated with

        • Jordi Fàbrega3,

          Affiliated with

          • Jorge Juan Fernández3,

            Affiliated with

            • Mei García4,

              Affiliated with

              • Natàlia Egea3,

                Affiliated with

                • Modesta Pousada1,

                  Affiliated with

                  • Beni Gómez-Zuñiga1,

                    Affiliated with

                    • Jaume Pérez-Payarols3,

                      Affiliated with

                      • Rafael Artuch2,

                        Affiliated with

                        • Francesc Palau5 and

                          Affiliated with

                          • Mercedes Serrano2Email author

                            Affiliated with

                            Orphanet Journal of Rare Diseases20127:53

                            DOI: 10.1186/1750-1172-7-53

                            Received: 30 March 2012

                            Accepted: 2 August 2012

                            Published: 21 August 2012

                            Abstract

                            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.

                            Keywords

                            Dietary treatment E-patient Inborn errors of metabolism Inherited metabolic diseases Patient empowerment

                            Findings

                            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 [13]. 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.

                            Guiametabolica.org offers (Figure 1): scientific information in easy jargon about clinical features, biochemical traits, genetics, treatment and prognosis of 56 IMD, translated abstracts of more than 300 articles, more than 100 tips and recommendations for daily life, 32 geolocated-resources, 172 specific recipes for controlled diets in proteins, carbohydrates and fat, and 6 stories for children in which IMD patients are the leading characters.
                            http://static-content.springer.com/image/art%3A10.1186%2F1750-1172-7-53/MediaObjects/13023_2012_402_Fig1_HTML.jpg
                            Figure 1

                            Home page of www.​guiametabolica.​org.

                            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

                            In 22 months we registered 243,305 visits and 663,497 page views, from more than 100 countries, and with average time on the site of 2:45 minutes (Figure 2). Near 70% of the visitors came from Latin America (Figure 3). Guiametabolica.org registered 886 comments that have been handled by the nutritional/medical staff (Table 1). There is equilibrium between those comments regarding educational issues and those related to Guiametabolica.org function as a support group (Table 2).
                            http://static-content.springer.com/image/art%3A10.1186%2F1750-1172-7-53/MediaObjects/13023_2012_402_Fig2_HTML.jpg
                            Figure 2

                            Map view of Guiametabolica.org and top ten countries regarding visits to the website (from Google Analytics, February 20th, 2012).

                            http://static-content.springer.com/image/art%3A10.1186%2F1750-1172-7-53/MediaObjects/13023_2012_402_Fig3_HTML.jpg
                            Figure 3

                            Evolution of unique visitors and visits of Guiametabolica.org (from Google Analytics, February 20th, 2012).

                            Table 1

                            Typology of contributions

                            Number

                            Kind of contribution

                             

                            Comments/Questions/Answers

                            257

                            Medical/nutritional questions

                            324

                            Medical/nutritional answers from nutritional/medical staff

                            73

                            Medical/nutritional answers from other users

                            69

                            Requests to contact other patients/caregivers

                            163

                            Other kinds of intervention

                             

                            Recipes

                            133

                            Guiametabolica staff

                            40

                            Users/ Fundación Alicia/ Consumer Eroski

                             

                            Geolocated Resources

                            22

                            Guiametabolica staff

                            10

                            Users

                            Table 2

                            Analysis of users’ questions (20th December 2011)

                            Comments/questions’ topics

                            Percentage

                            Comments

                            Comments related to Guiametabolica.org function as a support group

                            Requests to contact other patients/caregivers

                            17.5%

                            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.

                            13.0%

                            All of them with a positive point of view

                            Questions about practical issues of the daily life

                            5.8%

                            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

                            14.8%

                            Messages of gratitude and feelings are also incorporated in the vast majority of comments

                            Comments regarding educational issues

                            Information about their IMD

                            22.1%

                             

                            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

                            10.2%

                             

                            Doubts about dietary treatments and specific recipes.

                            16.6%

                             
                            Helpfulness of the different categories of contents is represented in Table 3. Concerning educational issues, 93.6% of questionnaire responders discovered new information or increased their knowledge. Regarding changes in daily life, 50.1% changed or developed at least one new habit. Regarding feelings of solitude, 75.4% of the visitors acknowledged that they felt less lonely and 72.4% realized that they were doing well when getting in touch with others in the same situation.
                            Table 3

                            Users’ evaluation: Usefulness of contents

                            Content

                            Mean* (Standard Deviation)

                            No response

                            Specific recipes

                            3.42 (0.8)

                            14/81

                            Scientific/medical information

                            3.37 (0.9)

                            5/81

                            Medical/nutritional responses to comments

                            3.34 (1.1)

                            8/81

                            Tips and recommendations

                            3.28 (0.9)

                            6/81

                            News

                            3.16 (0.9)

                            10/81

                            Comments from other users

                            3.07 (1.0)

                            11/81

                            Tales and games

                            3.01 (1.0)

                            10/81

                            Geolocated resources

                            2.78 (1.1)

                            26/81

                            *Helpfulness of the different categories of contents was scored in a 1-to-4 Guttman scale (1 = strongly disagree, 4 = strongly agree) by the users.

                            Conclusions

                            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 [4], 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 [7].

                            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 [8].

                            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 [9]. 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 [10].

                            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.

                            Declarations

                            Acknowledgements

                            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.

                            Authors’ Affiliations

                            (1)
                            Psychology and Educational Sciences Deparment, Internet Interdisciplinary Institute (IN3) Psinet Research Group, Universitat Oberta de Catalunya
                            (2)
                            Neurometabolic Unit, Hospital Sant Joan de Déu, Universidad de Barcelona, U-703 Barcelona,, Spain and Centre for Biomedical Network Research on Rare Diseases (CIBERER), Instituto de Salud Carlos III
                            (3)
                            Innovation, Research and Communication Departments, Hospital Sant Joan de Déu
                            (4)
                            Associació catalana de fenilcetonúria i altres trastorns del metabolisme
                            (5)
                            Instituto de Biomedicina de Valencia, CSIC, and Centre for Biomedical Network Research on Rare Diseases (CIBERER), Instituto de Salud Carlos III

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                            Copyright

                            © Armayones et al.; licensee BioMed Central Ltd. 2012

                            This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://​creativecommons.​org/​licenses/​by/​2.​0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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