Paper Merche Serrano - Guía metabólica: empowerment through health 2.0 tools in inborn errors of metabolism
Guía metabólica: empowerment through health2.0 tools in inborn errors of metabolism Mercedes Serrano#1, Jaume Pérez-Payarols*2, Júlia Cutillas*3, Jordi Fàbrega*4Manuel Armayones**5 M Antònia Vilaseca#6 Neurometabolic Unit, Hospital Sant Joan de Déu, U-703 Barcelona, Spain and Centre for Biomedical Research on Rare Diseases (CIBERER), Instituto de Salud Carlos III, Barcelona, Spain 1 email@example.com 6 firstname.lastname@example.org * Innovation & Research and Communication Departments,Hospital Sant Joan de Déu, Barcelona, Spain 2 email@example.com 3 firstname.lastname@example.org 4 email@example.com ** Psychology and Educational Sciences Deparment. Internet Interdisciplinary Institute (IN3) Psinet Research Group.UOC, Barcelona, Spain 5 firstname.lastname@example.orgAbstract— Inborn errors of metabolism (IEM) is a very affecting people’s general wellbeing, not interfering withheterogenous group of more than 500 diseases that mainly traditional care.appear during childhood and are considered rare diseases. Theeffectiveness of Web-based interventions on patient I. INTRODUCTIONempowerment, that is essential for patients with rare diseases Inborn Errors of Metabolism (IEM) is a very heterogenousdue to different reasons, has been recently proven. group of more than 500 diseases. Despite they are all differentGuiametabolica.org aims to create an interface for people in clinical presentation and evolution, prognosis, biochemicalinvolved in IEM, trying to facilitate the access to information, the features and type of inheritance, they share somecontact with professionals and other patients and offering a characteristics. They usually appear early in life, normallyplatform to develop supporting groups. We also present in thispaper preliminary results about impact on patients’ life. We during the childhood. They are considered rare diseasesdeveloped a frequently-updated 2.0 website in Spanish which because they affect less than 5 people in every 10,000.offers clinical and scientific information in easy jargon, tips and Furthermore, empowerment is essential for patients with rarerecommendations for the daily life, geolocated resources, specific diseases, which are chronic, difficult to manage, rare andrecipes for controlled diets in proteins, carbohydrates and fat, largely disregarded by the research or the medical communityand stories and games for children. Through the comment field and policy makers, this process of empowerment is essentialGuiametabolica.org offers the possibility to ask for them  . Empowerment is the “process of increasingmedical/nutritional questions to clinical professionals, and capacity of individuals or groups to make choices and toprovides the opportunity of sharing experiences among families. transform them into desired actions and outcomes”. TheIn the last 18 months we have registered 132,391 unique visitors,157,830 visits, and 456,993 page views with average time on site World Health Organization (WHO) has describedof 3:02 minutes. More than 60% of the visitors came from empowerment as a “pre-requisite for health”. Thedifferent parts of America, especially Latin-America. We have effectiveness of Web-based interventions on patienthad 9 weekly consultations that have been replied by the empowerment in chronic diseases has been recently proven,nutritional/medical staff involving, all together, 495 comments. specially referred to achieving self-efficacy, mastery and Guiametabolica.org has been widely considered for Spanish- control . On the other hand, online support groups reducespeaking IEM patients and their environment as a source of feeling of loneliness and social isolation.information. Participation is high probably due to the profile of Guiametabolica.org aims to create an interface for peopleour users; most of them are young e-caregivers with very high involved in IEM, mainly parents, trying to facilitate the accesslevel of implication. The impact on patients’ feelings and self-perception is currently being evaluated. Preliminary results show to information, the contact with professionals and otherchanges in their habits, but notorious improvement in their similar patients and offering a platform to develop supportingsenses of loneliness and self-efficiency. In conclusion, we groups. Guiametabolica.org aims to use internet as a tool foracknowledge that poor communication contributes to the health IEM patients’ empowerment.literacy related disparities in understanding of disease and healthstatus interfering with the empowerment process. Specific IEM II. METHODSwebsites, specially 2.0 tools and online support groups, might be We developed a frequently-updated 2.0 website in Spanishconsidered as a possible supplement to more traditional offering the following contents:professional approaches. Their contribution lies significantly in
(1) Scientific information in easy jargon about clinicalfeatures, biochemical traits, genetics, treatment and prognosisof more than 60 IEMs. They are also presented in a leafletformat in order to be printed. (2) Translated abstracts (from English into Spanish) ofmore than 200 articles with scientific contents and medicaladvances, as well as monothematic articles about medicalissues. (3) More than 70 tips and recommendations for the dailylife. (4) 32 geo-resources including hospitals, patientassociations, specialized shops,… (5) 150 specific recipes for controlled diets in proteins,carbohydrates and fat. Recipes are elaborated by our dieticiansbut also sent by visitors and only displayed after a nutritionalevaluation. (6) 6 stories for children in which IEM patients are theleading characters. Through the comment field Guiametabolica.org offers thepossibility to ask medical/nutritional questions to our clinicalteam. Guiametabolica.org also provides the opportunity ofsharing experiences among families. All the comments aresupervised by our medical/nutritional staff. Every month, anewsletter is edited and sent to the registered user database(n=753, 18th November, 2011). Guiametabolica.org technical and editorial team is made upof one specialist in clinical biochemistry, one nutritionist, onechild neurologist, one mother representing families andpatients’ associations, one journalist specialized in socialmedia and the internet, and one expert in communication andaudiovisual media. The target audience is: Patients, patients’ families, patientsassociations, professionals, teachers, friends, physicians,nurses, researchers… The estimated target population is about62,000 people, considering that Spanish is used in the websiteand the incidence of IEM. A recently began study is evaluating Guiametabolica.orgimpact on e-patients and e-caregivers’ feelings and self-perception as well as their developed skills and abilities, as ameasure of their empowerment process. We sent to theregistered users and we offered in the website a newlyelaborated questionnaire to assess the utility ofGuiametabolica.org including four major domains: (1)epidemiological characteristics of users, (2) participation inthe website, (3) users’ evaluation of contents, and (4) changesin their daily life and feelings. III. RESULTS From May 1st, 2010 to October 31st, 2011 we haveregistered 157,830 visits, and 456,993 page views withaverage time on site of 3:02 minutes. More than 60% of thevisitors came from different parts of America, especiallyLatin-America (Fig. 1, Fig.2, and Fig.3).
Fig. 1Map view of Guiametabolica.org and top ten countries regarding visits tothe website (from Google Analytics, 18th November, 2011).
B. Preliminary evaluation of impact Regarding the preliminary evaluation of impact, to date, we have analysed 65 completed questionnaires. 1) Visitors profile Among the responders, 80.0% are e-caregivers, 4.6% are e- patients and 7.7% are health professionals (physicians, researchers,…). Regarding frequency, 72.3% of users visit Guiametabolica.org at least once per week. The most common way to get in touch with Guiametabolica.org was through the medical staff of the Hospital Sant Joan de Déu (44.6%), who acts as the main prescribers. Among the visitors that haveFig. 2 Evolution of Unique Visitors of Guiametabolica.org from GoogleAnalytics (18th November, 2011) answered the questionnaires, 83.0% are registered visitors. 2) Participation in the website Of all the responders, 33.8% regularly write comments/questions. Among those who do not write, there are a number of reasons: 20.9% is because they do not require it but they would write if they need to, 11,9% is because of shyness and 7.0% do no feel comfortable sharing data on internet. In none of the answers the selected reason was lack of trust in the answer. 3) Users’ evaluation of contents Helpfulness of the different categories of contents were scored (1-to-4) by the users. The most useful contents in a decreasing order resulted: medical/nutritional responses to comments (mean: 3.48), specific recipes (mean: 3.47),Fig. 3 Evolution of Visits of Guiametabolica.org from Google Analytics (18th scientific/medical information (mean: 3.38), and tips andNovember, 2011) recommendations for the daily life (mean: 3.30). Comments from other patients, tales and games and geolocated resources were considered as quite useful (mean: 3.07, 3.07 and 2.89,A. Comment Field respectively). We have had, on average, nine weekly consultations that 4) Changes in daily life and feelingshave been replied by the nutritional/medical staff, involving Regarding information about IEM 96.5% of users haveall together, 495 comments. Requests to contact with other discovered new information or have increased theirparents represent 8.9%of the comments (Table I) knowledge. Concerning changes in daily life, 51.8% has changed or introduced at least one new habit. In relation to the TABLE I events suggested in our website, 50.0% have attended at least TYPE OF USERS’ CONTRIBUTIONS (18TH NOVEMBER, 2011) one event. Regarding solitude, 76.4% of the visitors Number Contributions acknowledge that they feel less lonely and 69.1% realize that Comments/Questions/Answers they are doing well when getting in touch with other in the same situation. 119 Medical/nutritional questions 163 Medical/nutritional responses from nutritional/medical staff 55 Medical/nutritional responses from other users IV. CONCLUSIONS 44 Requests to contact with other patients/caregivers To our best knowledge this is the first website 2.0 focused 114 Other kind of intervention on IEM facilitating information about several IEMs and online Recipes consultations with medical/nutritional staff. 135 Guiametabolica staff In general terms, there is probably an excess of health 25 Users/ Fundación Alicia/ Consumer Eroski information on the internet (phenomena usually known as Geo-resources “infoxication”). This is especially true for prevalent diseases. 22 Guiametabolica staff However, regarding rare diseases there is a lack of 9 Users information, particularly in terms of easy-to-understand
information. Guiametabolica.org offers relevant and updated In summary, poor communication contributes to disparitiesinformation in easy jargon that is, in fact, considered as one of in understanding of disease, probably related to differences inthe most useful contents by our visitors. As Barak et al stated, health literacy. These disparities in understanding of diseasea sense of personal empowerment is often achieved by may affect health status and interfere with the empowermentacquiring relevant information and knowledge, especially process.when information is acquired through direct access to relevant Specific IEM websites, specially 2.0 tools and onlinesources  . Moreover, successful communication may be support groups, might be considered as a possible supplementespecially important for patients with chronic medical to more traditional professional approaches. Theirconditions, such as IEM patients . contribution lies significantly in affecting people’s general Taking into account the low incidence of IEM, our wellbeing, not interfering with traditional care.estimated target population is very limited. However, ourresults after 18 months of work show that Guiametabolica.orghas been widely considered for Spanish-speaking IEMpatients and their environment as a source of information. ACKNOWLEDGMENT One important fact to analyze is the high percentage of The authors want to thank Fundación Alicia and Consumervisits coming from Latin America. We believe that our role in Eroski for their contribution with receipts and menus. Supportsome of those developing countries has to do with the limited was received from the Biomedical Network Research Centreresources that they probably have for health in general and on Rare Diseases (CIBER-ER, ISCIII).particularly for rare diseases. Users of Guiametabolica.org are very participative. Toexplain this fact, we would like to remark the particularprofile of our users; rather than e-patients, they are mainly e- REFERENCEScaregivers (more than 80%). They are normally parents with a  S. Aymé, A. Kole, and S. Groft. “Empowerment ofyoung child suffering an IEM, and then they probably are in patients: lessons from the rare diseases community”, Lancet.,the third, fourth or fifth decade of their life, which facilitates vol. 371, pp. 2048-2051, Jun. 2008.the possibility of being internet users. On the other hand,  S. Aymé, and J. Schmidtke. “Networking for rare diseases:parents acting as e-caregivers could be more active and a necessity for Europe” Bundesgesundheitsblatt -participative due to two strong reasons. The first one is related Gesundheitsforschung – Gesundheitsschutz.,vol. 50, pp.to affections, maternal and paternal relations are possibly the 1477–83, Dec. 2007.strongest, perhaps even more than filial, conjugal or fraternal  D. Samoocha, D.J. Bruinvels, N.A. Elbers, J.R. Anema,ones. The second one is due to the disconcerting situation of a and A.J. van der Beek. “Effectiveness of web-basedchild suffering a chronic illness. Chronic or severe diseases interventions on patient empowerment: a systematic revieware probably better taken when they affect elderly people. and meta-analysis”, J Med Internet Res.,vol. 12, pp. e23, Jun.When they involve children it may lead to uneasiness and 2010.generates numerous questions that need responses, making the  A. Barak, M. Boniel-Nissim, and J. Suler. “Fosteringe-caregiver more participative, implicated and adhered. empowerment in online support groups”. Comput Hum Behav., Preliminary data shows a decrease in feelings of loneliness vol. 24, pp. 1867-1883, Sep. 2008.among our users as well as a reduced level of self-criticism.  Bandura A. Health Promotion by Social Cognitive Means.We think that these changes are the first steps to begin the Health Educ Behav., vol. 31, pp. 143-164, Apr. 2004.necessary process of Patient Empowerment.  C.M. Castro,C. Wilson, F. Wang, and D. Schillinger. As limitations, we have to state that questionnaires online “Babel babble:physicians’ use of unclarified medical jargonare definitely not the best way to assess websites’ impact on with patients” Am J Health Behav. vol. 31, ppS85-S95, 2007.life because they may have several biases. Then, moreaccurate evaluating tools will be used in the future.