2024-03-06 08:30:00
In Spain, it is estimated that Every year 4,000 children are born with congenital heart disease. A moment of joy for parents is suddenly enveloped in worry, doubt and fear. To bring information regarding these pathologies closer to parents and thus banish misinformation, hoaxes, Federico Gutiérrez-Larrayahead of the Pediatric Cardiology Service at the La Paz University Hospital, has created the website cardiokids.es. In it, with a “simple and visual” language, seeks to communicate to families the heart problems their children have and how to help manage them. “Our voluntarist attitudes are needed, to contribute our grain of sand where the public administration does not reach,” says the person also responsible for Pediatric Cardiology at the Ruber International Hospital.
What objective does the website have?
The objective is to communicate to families, and patients, with simple and visual language the heart problems that their children may have and what to do with them, how to manage them.
Why did you decide to create it?
I have been treating many diseases, many patients and managing many doubts that worry families and that go beyond just technical information for many years. I act as a global manager, both of the technical aspects of how to diagnose or treat an illness, as well as the concerns that the parents and the patient themselves have: knowing the times, what is going to happen, what they have to do regarding school, how It will impact the rest of the siblings they have, if other problems may appear…
There are many details that you cannot resolve in 10 minutes in a consultation. Furthermore, when we talk to families, the conditions are not normal, they are not relaxed, many times they are in shock or they are concerns that when they reconsider or go home and share (the information) with the rest of the family, they begin problems arise that they then have no one to ask. Normally, this is resolved in a very impersonal way, by email, there is no way to exchange an opinion. Furthermore, we as professionals need to know how the information has been received and how it has been interpreted, because perhaps the message was not given well or was not well understood. And that is going to affect the patients themselves in many things, from overprotection to frivolization.
Also, my world is so technical that the information I have cannot be given by a pediatrician or an adult cardiologist. It is very technical and very specific information, regarding specific diseases and ages.
“I try to make the website something absolutely alive and aligned with the news that may arise in the media, social networks…”
If people consult you through the web regarding a specific case, how will you manage the responses?
What I do is receive feedback on the issues that concern them. First, because the goal is for it to be very real and very personal. I am seeing patients every day, and historically I have gathered from families and patients what concerns them. I have a very extensive database that I can analyze and thus group which are the most important or most transcendental doubts, those that qualitatively are going to have the most impact on the person. So what I do is write regarding them based on what is happening currently. I try to make it something absolutely alive and very aligned with the news that may arise in the media, social networks, series, that the children and parents themselves see.
Will it also serve to counteract the misinformation that exists in society?
Yes. The idea is to respond to all that misunderstood, ill-intentioned or taken out of context news, to give them the appropriate message, with a positive and hopeful tone. Nowadays, our diseases have treatments and people who are subjected to them lead normal lives. We must demystify and help these minorities have a life like everyone else.
Will the website be useful to bring innovation in treatment to minors?
Clear. One of the responsibilities that I have had in La Paz for two years has been to direct the Hospital’s Innovation and Digital Transformation. Which has brought me a lot closer to this area. It has always been something that has interested me but now I have a very deep knowledge of what new technologies are and the role they play for good and bad in this area.
Do you think that public administrations should promote initiatives like these, which bring medicine closer to patients?
There is already a lot of sensitivity, and initiatives are being made, but they do not reach the level of detail in certain areas, such as heart disease in minors. Positive attitudes are needed, to contribute our grain of sand where public administration does not reach. There is sensitivity, but this is also necessary. You can’t have any idea of the number of messages I receive with specific aspects, which are the ones I collect on my website.
In addition, I have drawing and communication skills, I have always drawn parents and patients their own illness, their personalized one. I draw what the circumstance is, and parents with a diagram understand it perfectly. This creates a very important connection that makes both parties understand what the map is of what we have thought for the specific patient.
Tetralogy of Fallot before (left) and following (right) its complete correction.
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