Guía metabólica: empowerment through health 2.0 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

1mserrano@hsjdbcn.org 6vilaseca@hsjdbcn.org

* Innovation & Research and Communication Departments,Hospital Sant Joan de Déu, Barcelona, Spain 2jpayarols@hsjdbcn.org 3jcutillas@hsjdbcn.org

4jordi@hsjdbcn.org **Psychology and Educational Sciences Deparment. Internet Interdisciplinary Institute (IN3) Psinet Research Group.UOC,

Barcelona, Spain 5manuelarmayones@uoc.edu

Abstract— Inborn errors of metabolism (IEM) is a very heterogenous group of more than 500 diseases that mainly appear during childhood and are considered rare diseases. The effectiveness of Web-based interventions on patient empowerment, that is essential for patients with rare diseases due to different reasons, has been recently proven. Guiametabolica.org aims to create an interface for people involved in IEM, trying to facilitate the access to information, the contact with professionals and other patients and offering a platform to develop supporting groups. We also present in this paper preliminary results about impact on patients’ life. We developed a frequently-updated 2.0 website in Spanish which offers clinical and scientific information in easy jargon, tips and recommendations for the daily life, geolocated resources, specific recipes for controlled diets in proteins, carbohydrates and fat, and stories and games for children. Through the comment field Guiametabolica.org offers the possibility to ask medical/nutritional questions to clinical professionals, and provides the opportunity of sharing experiences among families. In the last 18 months we have registered 132,391 unique visitors, 157,830 visits, and 456,993 page views with average time on site of 3:02 minutes. More than 60% of the visitors came from different parts of America, especially Latin-America. We have had 9 weekly consultations that have been replied by the nutritional/medical staff involving, all together, 495 comments.

Guiametabolica.org has been widely considered for Spanish-speaking IEM patients and their environment as a source of information. Participation is high probably due to the profile of our users; most of them are young e-caregivers with very high level of implication. The impact on patients’ feelings and self- perception is currently being evaluated. Preliminary results show changes in their habits, but notorious improvement in their senses of loneliness and self-efficiency. In conclusion, we acknowledge that poor communication contributes to the health literacy related disparities in understanding of disease and health status interfering with the empowerment process. Specific IEM websites, specially 2.0 tools and online support groups, might be considered as a possible supplement to more traditional professional approaches. Their contribution lies significantly in

affecting people’s general wellbeing, not interfering with traditional care.

I. INTRODUCTION

Inborn Errors of Metabolism (IEM) is a very heterogenous group of more than 500 diseases. Despite they are all different in clinical presentation and evolution, prognosis, biochemical features and type of inheritance, they share some characteristics. They usually appear early in life, normally during the childhood. They are considered rare diseases because they affect less than 5 people in every 10,000. Furthermore, empowerment is essential for patients with rare diseases, which are chronic, difficult to manage, rare and largely disregarded by the research or the medical community and policy makers, this process of empowerment is essential for them [1] [2]. Empowerment is the “process of increasing capacity of individuals or groups to make choices and to transform them into desired actions and outcomes”. The World Health Organization (WHO) has described empowerment as a “pre-requisite for health”. The effectiveness of Web-based interventions on patient empowerment in chronic diseases has been recently proven, specially referred to achieving self-efficacy, mastery and control [3]. On the other hand, online support groups reduce feeling of loneliness and social isolation.

Guiametabolica.org aims to create an interface for people involved in IEM, mainly parents, trying to facilitate the access to information, the contact with professionals and other similar patients and offering a platform to develop supporting groups. Guiametabolica.org aims to use internet as a tool for IEM patients’ empowerment.

II. METHODS

We developed a frequently-updated 2.0 website in Spanish offering the following contents:

(1) Scientific information in easy jargon about clinical

features, biochemical traits, genetics, treatment and prognosis of more than 60 IEMs. They are also presented in a leaflet format in order to be printed.

(2) Translated abstracts (from English into Spanish) of more than 200 articles with scientific contents and medical advances, as well as monothematic articles about medical issues.

(3) More than 70 tips and recommendations for the daily life.

(4) 32 geo-resources including hospitals, patient associations, specialized shops,…

(5) 150 specific recipes for controlled diets in proteins, carbohydrates and fat. Recipes are elaborated by our dieticians but also sent by visitors and only displayed after a nutritional evaluation.

(6) 6 stories for children in which IEM patients are the leading characters.

Through the comment field Guiametabolica.org offers the possibility to ask medical/nutritional questions to our clinical team. Guiametabolica.org also provides the opportunity of sharing experiences among families. All the comments are supervised by our medical/nutritional staff. Every month, a newsletter is edited and sent to the registered user database (n=753, 18th November, 2011).

Guiametabolica.org technical and editorial team is made up of one specialist in clinical biochemistry, one nutritionist, one child neurologist, one mother representing families and patients’ associations, one journalist specialized in social media and the internet, and one expert in communication and audiovisual media.

The target audience is: Patients, patients’ families, patients associations, professionals, teachers, friends, physicians, nurses, researchers… The estimated target population is about 62,000 people, considering that Spanish is used in the website and the incidence of IEM.

A recently began study is evaluating Guiametabolica.org impact on e-patients and e-caregivers’ feelings and self-perception as well as their developed skills and abilities, as a measure of their empowerment process. We sent to the registered users and we offered in the website a newly elaborated questionnaire to assess the utility of Guiametabolica.org including four major domains: (1) epidemiological characteristics of users, (2) participation in the website, (3) users’ evaluation of contents, and (4) changes in their daily life and feelings.

III. RESULTS

From May 1st, 2010 to October 31st, 2011 we have registered 157,830 visits, and 456,993 page views with average time on site of 3:02 minutes. More than 60% of the visitors came from different parts of America, especially Latin-America (Fig. 1, Fig.2, and Fig.3).

Fig. 1 Map view of Guiametabolica.org and top ten countries regarding visits to the website (from Google Analytics, 18th November, 2011).

Fig. 2 Evolution of Unique Visitors of Guiametabolica.org from Google Analytics (18th November, 2011)

Fig. 3 Evolution of Visits of Guiametabolica.org from Google Analytics (18th November, 2011)

A. Comment Field

We have had, on average, nine weekly consultations that have been replied by the nutritional/medical staff, involving all together, 495 comments. Requests to contact with other parents represent 8.9%of the comments (Table I)

TABLE I TYPE OF USERS’ CONTRIBUTIONS (18TH NOVEMBER, 2011)

Number Contributions Comments/Questions/Answers

119 Medical/nutritional questions 163 Medical/nutritional responses from

nutritional/medical staff 55 Medical/nutritional responses from other users 44 Requests to contact with other patients/caregivers 114 Other kind of intervention Recipes 135 Guiametabolica staff 25 Users/ Fundación Alicia/ Consumer Eroski Geo-resources 22 Guiametabolica staff 9 Users

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 have 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), scientific/medical information (mean: 3.38), and tips and 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, respectively).

4) Changes in daily life and feelings

Regarding information about IEM 96.5% of users have discovered new information or have increased their knowledge. Concerning changes in daily life, 51.8% has changed or introduced at least one new habit. In relation to the events suggested in our website, 50.0% have attended at least one event. Regarding solitude, 76.4% of the visitors acknowledge that they feel less lonely and 69.1% realize that they are doing well when getting in touch with other in the same situation.

IV. CONCLUSIONS

To our best knowledge this is the first website 2.0 focused on IEM facilitating information about several IEMs and online consultations with medical/nutritional staff.

In general terms, there is probably an excess of health information on the internet (phenomena usually known as “infoxication”). This is especially true for prevalent diseases. However, regarding rare diseases there is a lack of information, particularly in terms of easy-to-understand

information. Guiametabolica.org offers relevant and updated information in easy jargon that is, in fact, considered as one of the most useful contents by our visitors. As Barak et al stated, 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 [4] [5]. Moreover, successful communication may be especially important for patients with chronic medical conditions, such as IEM patients [6].

Taking into account the low incidence of IEM, our estimated target population is very limited. However, our results after 18 months of work show that Guiametabolica.org has been widely considered for Spanish-speaking IEM patients and their environment as a source of information.

One important fact to analyze is the high percentage of visits coming from Latin America. We believe that our role in some of those developing countries has to do with the limited resources that they probably have for health in general and particularly for rare diseases.

Users of Guiametabolica.org are very participative. To explain this fact, we would like to remark 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 IEM, and then they probably are in the third, fourth or fifth decade of their life, which facilitates the possibility of being internet users. On the other hand, parents acting as e-caregivers could be more active and participative due to two strong reasons. The first one is related to affections, maternal and paternal relations are possibly the strongest, perhaps even more than filial, conjugal or fraternal ones. The second one is due to the disconcerting situation of a child suffering a chronic illness. Chronic or severe diseases are probably better taken when they affect elderly people. When they involve children it may lead to uneasiness and generates numerous questions that need responses, making the e-caregiver more participative, implicated and adhered.

Preliminary data shows a decrease in feelings of loneliness among our users as well as a reduced level of self-criticism. We think that these changes are the first steps to begin the necessary process of Patient Empowerment.

As limitations, we have to state that questionnaires online are definitely not the best way to assess websites’ impact on life because they may have several biases. Then, more accurate evaluating tools will be used in the future.

In summary, poor communication contributes to disparities in understanding of disease, probably related to differences in health literacy. These disparities in understanding of disease may affect health status and interfere with the empowerment process.

Specific IEM websites, specially 2.0 tools and online support groups, might be considered as a possible supplement to more traditional professional approaches. Their contribution lies significantly in affecting people’s general wellbeing, not interfering with traditional care.

ACKNOWLEDGMENT

The authors want to thank Fundación Alicia and Consumer Eroski for their contribution with receipts and menus. Support was received from the Biomedical Network Research Centre on Rare Diseases (CIBER-ER, ISCIII).

REFERENCES

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