Webinar: Malattie Infiammatorie Croniche Intestinali nei bambini

Añadido: 2026-05-12

[00:00:36]Good afternoon everyone, and thank you for joining us. I'm Salvo Leone, general director of Amici Italia, and it's a pleasure to open this live broadcast, which represents the first stage of a journey that will lead us over the coming weeks toward the central event of World Inflammatory Bowel Disease Day 2026, which this year, I remind you, we will celebrate in Padua. We wanted to create a series of meetings that weren't just informative, but also capable of listening, sharing, and truly bringing people together and addressing the issues that matter—the disease, of course, but also the life that surrounds it. And let's start with a particularly important topic because when we talk about chronic inflammatory bowel disease in pediatrics, we're not just talking about diagnoses, but about families, growth, and the future.

[00:01:26]We're talking about children and young people facing a complex journey, and parents who often find themselves searching for answers, certainties, and points of reference. This is why it is essential to have competent professionals at your side, who also fully understand the human value of care. This evening we have the pleasure of being accompanied by three experienced and highly sensitive experts, Professor Paolo Lionetti, Dr. Luca Scarallo, and Dr. Sarazo, who are connected. I ask the director to put them live, as they are connected to us from the Meer Hospital in Florence. Good afternoon, Professor Lionetti. With them, we will try to better understand what it means to diagnose, treat, and accompany a child with friends, but above all, how to help families feel less alone and more aware. Well, thank you so much for being here with us, Professor Lionetti, Dr. Renzo, Dr. Scarallo, and for your contributions. Thanks to all of you who are following us from home.

[00:02:23]I remind you that we are live on Facebook, LinkedIn, YouTube, Twitter, and Instagram, so I also invite you to ask questions through the association's social media channels and then we can get started.

[00:02:37]Professor Lionetti, maybe I'll start by giving you the first question. If you'd like, perhaps a few introductory words, then we'll move on to the questions we started with for the classes—the icebreaker questions we've prepared to get started. It's always a pleasure to collaborate with the association, with the extremely active association, and these events, which I think are also more direct contacts with patients or with the families who surround the children, as we thank, chosen here we are at the Maia Hospital in Florence, and I also introduce the two collaborators, Dr. Sarenti.

[00:03:22]Good afternoon everyone, it's a pleasure to be here and we can't wait to get started so we can communicate with you all.

[00:03:30]Luca Scarallo, good afternoon. Good afternoon everyone, and thank you for the invitation. I can't wait to get started.

[00:03:40]We hope we can adequately answer any questions you may have.

[00:03:47]So, Professor Leonetti, I'd say we start with you. So, let's say, when we talk about intestinal congestion in children and adolescents, what pathologies are we talking about and how widespread are they today?

[00:04:03]Well, let's say that up until 15-20 years ago this was not a frequent problem in pediatrics, it was a problem that mainly affected young adults and let's say that in the last 30-40 years we have progressively seen an increase in these conditions in the industrial, Western world and at the same time in the last 20 years, let's say, a shift from the onset towards the stages, therefore it is also a problem of pediatric age and the impression is that this problem is growing in the sense that we see more and more children, even very young ones, who then have such a plastic, chronic intestinal disease.

[00:05:05]You will ask me why they are on the rise.

[00:05:07]Maybe I would like to ask myself why they are on the rise.

[00:05:11]Yes, and we say above all because they are increasing. Well, I mean, this is a really difficult answer to give because it 's not just a problem of chronic curative diseases, but in general all non-immediate diseases like obesity, for example.

[00:05:34]This is something that, as soon as the country starts to become, let's say, more or less at a lower socioeconomic level, these conditions improve.

[00:05:49]There is definitely a genetic component.

[00:05:51]We have been doing genetic research for many years and continue to do so, but genetics hasn't changed.

[00:06:00]While instead the problem is probably the environmental problem of everything that has been nationalized could contribute.

[00:06:11]Now we are a little more focused on how it can favor not a little pro-inflammatory which intimately favors a little.

[00:06:28]But what are the signs that a parent should never underestimate and that should lead her to consult her pediatrician or a specialist?

[00:06:41]Yes, so let's say it wasn't a pediatric problem, it became one and I must say that we have also achieved a certain satisfaction in our region. The family thinks about it much more and the diagnosis, let's say, is made much more certainly.

[00:07:00]Let's say the classic symptoms are diarrhea, weight loss, eh those are the abdominal pains are classic symptoms, but it can happen especially in psychiatry that the condition is somehow dominated by extraintestinal infections that do not suggest, for example, poor growth with regards to the spot or an arthritis, eh manifestation of titane rite malod. In short, there are some exceptional conditions that can be present in the presence of the conditions. we have to think about the possibility that this is there, but here is a certain satisfaction, I must say that the latency times in summary and at diagnosis have been reduced. We have given enough in this sense.

[00:07:58]Here, these are pathologies that have an impact, we know that they have a huge impact on adults and we know how important this can be, let's say, even in the pediatric field. Now you would like to reiterate how important it is to reach an early diagnosis in pediatric age and above all can you tell us something, the incidence, how many new diagnoses are made 100 diagnoses of inflammatory bowel disease, how many are those in pediatrics?

[00:08:30]Here, but it is thought that 20-25% of cases have their onset at the age of Africa today and the impression is also that perhaps the onset is moving ever faster.

[00:08:45]In the pediatric world, we have talked about what are called early-onset climacteric diseases. There are very rare genetic forms that manifest themselves immediately in the first two years of life, but the vast majority of forms are plastic and chronic malactic forms. Let's say that in Northern Europe Cron's disease is on the rise, while in our country it's half and half, or perhaps a certain political anchor. This is the debut of the season.

[00:09:30]But are there any key tests that can help make a correct diagnosis in children and adolescents? Clearly, we start from the assumption that many of these things are known, but let's consider that we are talking about parents who perhaps have a child with a suspected case of this pathology or who has just been diagnosed, so we need to guide them. So forgive me if I ask you questions that may seem superfluous from a certain point of view, so what are the main tests for arriving at a correct diagnosis in children and adolescents? Well, I want to clarify one thing first because you have to trust the family trust that they are quite on this aspect and they suspect it when there is the cone. So the main thing is for the doctor to suspect them. Please note that recurrent abdominal pain is very common in pediatrics. The vast majority of cases are not only functional. I want to make this clear. After that there are some fairly simple tests of the pro-stagetin indices if there is diarrhea or if blood appears in the stool. In short, these are what we call red flags that should make the pediatrician think that there could be the onset of this arch of these red flags instead of a rare case of so-called functional problems and I would like to point out that some diagnostic methods have undoubtedly improved in recent years and beyond the first level tests etc., for example, imaging techniques and then oscopic examinations. and I would like to give the floor to Dr. Scarallo specifically for the imaging methods, if he can tell us something, given that lately we have also done a lot of shields, so it is not significant.

[00:11:40]Yes please. Thank you. Um, regarding imaging techniques, clearly in recent years, both for the pediatric world and for the translated world, there has been a technological revolution that has led to the development of many imaging techniques, but I think that in pediatrics, well, we have relied on it, but also in the world of adult gastrocologists there is a very useful, fast, non-invasive test, which is the ultrasound of intestinal anxieties.

[00:12:12]This is an ideal exam for pediatrics, for the pediatric setting, because it is increasingly becoming an extension of the doctor's hand during the counterscope visit. It is a quick, repeatable test, which causes minimal discomfort for the child and which, if compared to the more technologically advanced techniques, to use a play on words that I mentioned before, such as magnetic resonance or, to a lesser extent, in pediatrics, an abdominal attack, the correspondence between what an expert sonographer sees and what is seen with longer, more investigative methods, but also with greater discomfort for the patient, this concordance is very good, so, for me, let's say, as an imaging method, an excellent watershed is represented by the ultrasound of intestinal anxiety.

[00:13:08]Yes, thanks R. And instead when we have to be a little more invasive, Sara will use endoscopic techniques when the time is right, but eh say when there are the right indications.

[00:13:20]Yes, the correct indication is when the suspicion of a chronic intestinal inamoratory disease is clearly concrete and there is a need for an initial diagnosis, therefore going to define exactly what we are dealing with. The tests that are done first are esopagogastronenoscopy, gastroscopy and lactocolonoscopy, therefore going to endoscopically study both the colon and the last tracts of the intestines.

[00:13:48]Then there is a large, long tract of the intestine to study which will be important to understand whether or not it is affected.

[00:13:57]In this regard, a test that consists of two capsules, a small capsule about the size of a tablet, is very useful. It can also be simply ingested and will record everything that is the image of the mucous membrane of the intestinal tract and thus really provide a picture of the entire digestive tract and know where to start.

[00:14:26]Salvo, I'll give you a word. Go. Yes, a question came to mind that often one of the most critical moments for families is the moment of diagnosis because it generates fear and disorientation.

[00:14:41]What should be explained immediately to a parent when they are diagnosed with inflammatory diseases?

[00:14:47]And if you'll allow me, I'd like to ask Dr. Renzo this question.

[00:14:51]Yes.

[00:14:53]Obviously, this is what we think when we leave the theater and find ourselves talking to the parents who are anxiously waiting outside the door to know what we saw. And there it will be important to be clear and explain what was seen, but above all to explain to the family that it is true, it will be a chronic problem, but this does not mean being chronically ill or indeed chronically unable to live the whole life of the child, of the young person.

[00:15:26]Indeed, it will be our job to help and guide him through the treatment and follow-up process.

[00:15:34]precisely the act as a purpose to make them live the life that all boys and children of that age lead. It comes to mind that many times we, as friends, have found ourselves in situations where we have children who still don't have a certain diagnosis and whose parents often do n't know where to go and so they turn to the association for references to a center that can assist them adequately and make the diagnosis or prevent the diagnosis. inflammatory bowel diseases. I ask this question to Professor Lionetti. What is the role of the pediatric specialist center in the care of children with inflammatory bowel disease? So from this point of view I'm not just talking about the diagnosis, but then the follow-up?

[00:16:28]I can add one thing to the question you asked Dr. Lenzo, a recommendation that parents make when communicating the diagnosis to explain it to their children too, that is, you shouldn't hide it. Sometimes there's this tendency, let's say, to not—well, of course, maybe in a simple way, it depends on the child's age, but children understand everything, that 's the point. So it's better to explain to them too, to involve you because it will be important when I grow up.

[00:16:56]Regarding this question you asked me about the Specialist Center, it is very important that these conditions are followed by centers who see a lot of them.

[00:17:07]Luckily, throughout Italy, at least one, if not 200, regional specialists are present, so, well, I think that maybe my colleagues might not have them, but I think it's important to centralize because the more you have in any given condition, the more you see, the more experience you have. And then, a specialist center must have not only a dedicated meteorologist, radiologist, scopist, psychologist, therapist, and then a rheumatologist when needed, you understand? It is therefore important that these conditions are monitored by multiple specialists in a, so to speak, integrated and collegial manner.

[00:17:59]Now, this is a very important point which is the work of the crew. We often talk about a multidisciplinary approach, you are the ones who told us from the beginning how important it was to look at the disease from a 360° perspective, so you are probably also the ones who are, I might say, most sensitive to the topic of nutrition, so eh and aspects that maybe some time ago, now there is more awareness, adults considered less. So the question I ask you, Professor Lionetti, is how important is teamwork between the gastroenterologist, pediatrician, nutritionist, psychologist, nurse, and family pediatrician? How important is this in management and, above all, explaining to parents when they arrive at a center what to expect so as to be able to say that there is a multidisciplinary approach.

[00:18:59]And parents, that is, in the sense that they must have the opportunity to meet more colleagues, more specialists. This is very important, that is, one thing needs to be clarified: there is someone who has to guide and dedicate a pediatrician, but he must also have, how shall I say, the ability to involve various specialists in the management of these conditions, right? Well, for example, a key figure, we'll definitely talk about it later, I imagine Romando will come up, well, we need the help of a dietician because the radiologist must be a radiologist who has experience in these things.

[00:19:42]and then here's another aspect that I find really useful, that is psychological support, having a structure with a psychologist dedicated to these conditions who has experience with these conditions and who can support families, the child, but also us doctors who help us, because it's not always so easy to interpret the needs of families or the differences between three parents. So I think it's very important to have a multidisciplinary staff that can help us.

[00:20:22]A question came to mind now: whether significant diagnostic delays still exist, and if so, what are the most frequent obstacles, Professor Lionetti.

[00:20:39]As I was saying before, these have decreased. We also have data from the national registry of the Italian Pediatric Society, which has supported us for years, and which tells us that the delay causes the onset of symptoms and the diagnosis, if any, is revised. I have to tell you something regarding cholecystitis, well, this delay is usually much less because it is a disease that manifests itself quite clearly with blood, in short.

[00:21:12]So, while it was almost normal for Cron to have a 23-year delay in diagnosis, especially when there are no symptoms today, fortunately this is no longer the case and since unfortunately it has increased in other areas where family members have experienced it, even the centers, let's say peripheral hospitals, are thinking about it and the important thing is to have a network that works. Now, however, here in Tuscany we have a really good group, a gastology area and everyone collaborates, especially these patients who call us when they arrive at the various hospitals in the region. It is therefore important to network with colleagues to shorten the delay in diagnosis and make the diagnosis as quickly as possible.

[00:22:08]Let's say there has been an improvement in recent years from this point of view. As an association, we have noticed it, let's say, compared to a few years ago. 10 years ago, there is greater organization, there is a greater network of treatment centers, but it is the same thing, eh, also from a therapeutic point of view.

[00:22:28]So I ask Dr. Scarallo a question. Have there been any changes, not only in terms of network management, but also in terms of therapeutic options for children and adolescents with inflammatory bowel diseases?

[00:22:44]Thanks for the question. certainly, in the sense that in the last 30 years there has been a literal explosion of, let 's say, new therapeutic approaches, not just pharmacological ones, you know, to these pathologies. These have mainly concerned the world of adults, of chronic industrial diseases of adults and with a certain approval delay, unfortunately, also diseases, but diseases are also industrial, so today we have a much much broader therapeutic argument at our disposal. And another important innovation, in my opinion, which will probably be discussed later, as a therapeutic innovation, is certainly the nutritional approach.

[00:23:34]We pediatricians may be a bit obsessed, but we really do have a weapon: diet, and I'm obviously only talking about Fron's disease today, unfortunately. We have a weapon that is capable of turning off inflammation in many cases and that does not require the use of drugs and therefore has no side effects, no unwanted effects, other than, let's say, requiring strict adherence to a diet.

[00:24:09]One question, Dr. Scarallo, these drugs we have available, let's say, have allowed a great improvement in people's quality of life over the years, because we stopped talking about symptom control and started talking about mucosal healing.

[00:24:30]The question I want to ask you is whether the therapies available today allow children to have as normal a school, sports, and social life as possible, because we know that the drug is no longer a product, but an experience to be lived by the patient, not only from a clinical perspective, but also in terms of the method of administration. What can you tell us about this?

[00:24:53]Uh, thanks, thanks question, absolutely. Well, the treatment goals have shifted and clearly the ultimate goal is to ensure an excellent quality of life, a quality of life no less than that of an individual who does not have such a condition, that is, who does not have an instinctive time. And this also affects new therapies because clearly, if you will, the use of infusion therapies that required, let's say, the need for the child, for the family, to go to the center to follow the infusion has been set aside somewhat in favor of other administration methods such as subcutaneous administration, which can be done at home by the parent in the case of the youngest child, but in reality our adolescent patients, by the patient themselves and also obviously to the development of oral therapies. these between, let's say, clearly combining an efficacy with also a different administration strategies which are also let's say patient friendly, they are friendly from the point of view of the quality of life also for the patient. I must say that today we are absolutely able to guarantee a normalization of the quality of life for these patients.

[00:26:18]Let's say that with these drugs we often talk about bioinitiation, in the sense when it's a parent, because here we're obviously inevitably talking about people, minors, and therefore the discussion in choosing the therapy certainly takes place with the little patient, the young patient, but essentially there's also a discussion with the parents and often parents get information from places that aren't scientifically validated and may be or are afraid of drugs, especially these biotechnological drugs. This is how we can correctly explain the relationship between benefits and risks, Dr. Renzo, so yes, this is very, very true, and the communication we have with these families, explaining that from the point of view of choosing the therapy and starting at least one therapy, we always look at it as if on a scale where the scale certainly leans towards the benefits of starting the drug rather than the side effects.

[00:27:29]We explain that we know the side effects and can prevent them, and when this is not possible, we can intercept them early and intervene.

[00:27:41]Let's reassure the family. An important thing is that any doubts are reported to us so that they can be explained precisely to avoid that, as is right, we all go online, parents go online and risk finding answers that do not correspond to the truth. We also take care to refer to the association, to you, because there is certainly a scientific basis behind it and strong evidence in what is then answered, because otherwise you navigate those seas of the internet where you can find everything and you risk making the wrong choices.

[00:28:21]Yes, from this point of view, this question I asked you gives me the opportunity to talk about a very important project that we as an association have been carrying out for the past year and that continues, called Infobio.

[00:28:33]We collected patients' fears through a quantitative questionnaire in which the responses of 2,400 people were collected.

[00:28:45]We organized two, let's say, moments of discussion with patients in which their fears, especially regarding biotechnological therapies, emerged, and we created a list of questions that clinicians from various Italian centers are answering precisely to provide patients with a sort of ecosystem that was scientifically validated and that provided all the information relating to these drugs. to help them understand the opportunities and potential risks, and thus ensure that patients, or their family members, can make informed and, above all, informed choices. This is why I invite you to visit the Amici website if you have any questions or curiosities about these drugs, because you will also find them on our YouTube channel, where there is a dedicated playlist that is constantly updated. When we talk about drugs, a survey we conducted a few years ago comes to mind. It looked at therapeutic attrition, and it turned out that one in 10 patients discontinues treatment and doesn't tell their doctor. one in four patients, 13% and let's say 13% stop it, tell the doctor, so we have non- adherence rates equal to one in four patients.

[00:30:09]Here, especially in the pediatric and adolescent setting, the patient often struggles to connect the word chronic with the word forever. And so Dr. Renza, Renzo, I ask you how important adherence to therapies is, especially in adolescence. Do we want to explain this to the kids who are online and following us right now? it 's very important. We always make sure to explain this because, as you have pointed out, there is a high percentage of patients who somehow abandon therapy and we know that discontinuing therapy is among the main causes of relapse. I'm fine, I'm stopping the therapy, I'll have a relapse for a while, probably also in part because I stopped the maintenance therapy, so it's very, very important that the patient, from an early age, especially in adolescents, a bit like Professor Banetti said, is involved in the treatment and monitoring process because he or she must be aware. We always ask our patients to write down any questions they have once they leave the lab, and to ask them the next time, because awareness is really important.

[00:31:34]But there are differences, since we're talking about therapies, among those I know for sure that you don't have many many drugs available compared to adults. In pediatrics, the drugs available are much fewer and therefore, well, for you it's a little more difficult, I would say, to manage patients, especially those with a complex disease. But the question I want to ask Dr. Scarallo is whether there are important differences between the treatment of Tron's disease and that of pediatric pulcerosa.

[00:32:10]Uh, thanks, thanks for the question.

[00:32:11]So, let's say that most of the advanced therapies we use, as you rightly said, we have not approved these pediatric therapies, but we use them with some, let's say, artifice, in the sense that they are therapies approved for adults, we use them in offel regimens for younger children.

[00:32:40]As advanced therapies, there are no major differences except for the fact that some of the new molecules were approved first in one condition and then in the other. To date, I believe that the biggest therapeutic difference between ulcerative colitis and Crohn's disease is that for Crohn's disease we have a nutritional therapy, let's say some nutritional therapies that are validated, effective, and capable of suppressing inflammation.

[00:33:11]As for polycystic oedema, although this is a question we are asked practically every time we make a diagnosis, many times even during follow-up, we don't have any diets that are capable of suppressing inflammation, that is, we don't have any diets that we can truly use as therapeutic weapons, unlike tronics.

[00:33:35]Let's say that these drugs are often used early. Early on and often, perhaps some parents ask themselves, "But why start aggressive therapy right away?"

[00:33:48]This is probably because these diseases can affect the growth of children. In what way, Dr. Scarallo?

[00:34:01]And so if and if they can influence growth, clearly they absolutely can and they do so, as Ganetti's introduction said. This is the growth failure is one of the, let 's say, alarm bells that must lead to, let's say, a specialist pediatric evaluation and then possibly a gastroenterologist.

[00:34:25]These diseases affect growth in various ways.

[00:34:29]At a biological level, the inflammation that is triggered in these conditions can directly block growth, eh, in size, in height, and then obviously these are conditions that can have a series of intestinal symptoms that can be associated with a defect in absorption or with the fact that the patient eats less because he is afraid of the symptoms.

[00:34:58]gastrointestinal and in some ways practically induces nutritional deficiencies for a double reason because it absorbs less food than it eats and eats less for fear of feeling worse. Growth is an important therapeutic goal because it is not something that will happen later if it does not occur in childhood. If it doesn't happen in childhood and let's say the growth spurts merge, it's something that won't happen again. So we pediatricians are particularly careful, and often the reason we propose and decide to perform advanced therapies is precisely this: that is, that growth is not progressing satisfactorily.

[00:35:44]Here, we talked about nutrition.

[00:35:47]Just think, in 2017 a survey was conducted and this survey did not involve pediatricians because you were already sensitized and more than 1000 patients responded to the question and intestinal amateurs to the question doctor what can I eat? Because inevitably, after a diagnosis, one of the first questions a patient with these pathologies asks is, is it serious? It's chronic, will I die? The second or third question, since it impacts the intestine, what can I eat? In 2017, the interviewed castentologists answered in 50% of cases you can eat everything and in 50% of cases there is no evidence? The question I want to ask you pediatricians, because you have been somewhat, I must admit, trailblazers in this regard, and you said it, Dr. Scarallo, we can finally say that nutrition plays a role in disease management, and I ask this question to Professor Lionetti, so what is correct to say and what risks creating false expectations?

[00:36:56]Yes, as some of us have been taught, there's a lot of talk about diets these days, but we need to be able to distinguish between the therapeutic dietary treatments we use. Diarrhea as a first-line treatment is what the normal diet is that we have to follow for years, especially because cortisol was used as the first line, right? Cortisone is a powerful anti-chlamydia drug, but it also inhibits growth, so we create even more. Practically speaking, for Crohn's disease, for many years now we have been using exclusive liquid diets. We talk about exclusive liquid diets, but in reality it is an exclusive liquid diet that adults practically never accept, while adolescents and children accept them, and have accepted them quite a bit, with some problems.

[00:37:57]In short, being able to only have one formula for 68 weeks without being able to consume solid foods is undoubtedly a sacrifice, although perhaps it was still worth giving it in certain situations.

[00:38:15]In recent years, a specific exclusion diet has been developed for Crohn's disease, which is giving us great satisfaction as a marine treatment.

[00:38:22]We can also see that it can also have an add-on efficacy, that is, in addition to biological drugs. This is a very restricted diet that lasts 6-8 weeks in various phases.

[00:38:37]Beyond this, however, for example, one piece of advice is to always remove too little fiber because it makes diarrhea worse, especially the product. Now, except in very serious situations, etc., it is not true that we need to reduce the fiber in our diet, even frozen foods, because they can also have a beneficial effect. So the diet must be free, but in some way if I then have to go on what the theories are, perhaps we should try to reduce it or eliminate ultra-processed foods that can have a certain inflammatory capacity.

[00:39:19]So, eh, I repeat, there are effective dietary treatments that are the cross of everything between the CD system and the eral ration with polymeric formulas that are effective in inducing the revision of but they cannot be added to the fluccidor rock therapy.

[00:39:40]As for diet, as Dr. Scarallo said, we don't have any effective treatments for children, but there's no need to go on exclusion diets or, above all, eliminate fiber, fruit, and vegetables, because these certainly have a positive effect, and this also applies to the general population.

[00:40:01]And it must be said that in some cases, these therapies are also paid for by families, right? are not currently refunded. This is an activity we're doing as an association. We're trying to ensure that when pediatricians prescribe certain nutritional supplement treatments, these aren't then the responsibility of the family because they're not reimbursed and aren't even deductible.

[00:40:27]But are there certain foods that are forbidden for everyone or does the diet have to be personalized? Professor Bianetti.

[00:40:38]So, it's clear if someone has a clear relationship— if I eat this food I feel sick— but with a clear causal relationship, they say they don't eat it, that's the doubt.

[00:40:55]But now tell me about things that maybe do n't have any emphasis. For example, there's always a gluten issue that could be, well, can you reduce the amount or is there always talk about lactose? This is quite ridiculous, I'm telling you honestly because there are also commercial interests, lactose, sugar, I find milk and if someone is lactose intolerant, that is, they consume it and shortly after they have diarrhea, it's a problem, then in that case it's a problem, but all this has been overemphasized instead of a problem, so let's say that what is perhaps general advice, as I said before, is to try to cook at home, avoid too many ultra-processed foods, that is, those inductions in which additives, emotional enhancers, caraina, these things have been put, let's read the labels, let's say that this is an argument that applies to the general population, but I think that especially with regards to electronic union, trying to eliminate this type of element could also have a role in reducing flores, but compared to the specific treatments we mentioned, there is no evidence of the effectiveness of these types of diets, but even the Mediterranean diet. There is now data that tells us that following the Mediterranean diet is convenient, but very few of us follow the Mediterranean diet.

[00:42:22]This is the reality of the C.

[00:42:25]Allow me to take a step back, Professor Lionetti, because it goes back to the multidisciplinary management of the patient, precisely to explain how nutritional assessment has become central in the management of patients with these pathologies. Well, because many times the failure of pharmaceutical therapy is due to the fact that the patient is malnourished. The failure of the surgery could be due to the fact that the patient is malnourished and often in treatment centers the patient is not evaluated from this point of view. Here, we conducted a survey in 2023 that we presented to Minister Schillaci, the Minister of Health, who found that out of a sample of 15 people, only one in four had been evaluated from a nutritional standpoint at the healthcare facility. One in four did it properly and half did not.

[00:43:22]These are significant and very important data to underline how much this aspect, especially in the pediatric field, is highly considered, so I would say that it is easier to find a nutritional consultation in a pediatric center, in an adult center, then maybe it is not true, it is not like that, but it is important to rely on centers that also have this figure within their care team so that the patient can be cared for, as they say, 360 days a year.

[00:43:51]No, thank you very much for this very, very correct observation and going into specifics, there are situations where surgery is necessary. I am referring to eh the stenosis that the fibrosis of the disease of Che the problem can only be solved by resecting the stenose tract. Well, you need to go to the good nutritional status intervention. There are ways to improve nutritional status. This is very important because if you go to surgery with a good nutritional status, so you have taken action, you have followed a diet and it has made you gain weight, you have a very high complication rate, so this is also very important beyond the treatment for remission even in the surgical patient, it must be achieved and this also applies to children. Yes, in fact we are very sensitive, we always try to avoid it and most of the time there is no need for urgency, that is, it should be scheduled when the patient's nutritional status has reached the correct level and this, I repeat, avoids - there is dubious scientific evidence - drastically reduces the risk of complications.

[00:45:14]Professor, let's pass a question below that comes from Mrs. Scarallo who I assure you is not related to the doctor, so no.

[00:45:25]Well, what does he say? "Dear doctors, my son was in pediatrics from the age of 13 until he was 18, suffering from severe literosa, never in remission. Every night, in addition to the biologics, he never stopped taking 20g of Urbason, for several months, even morning and evening, always in equisms. Today he is still on biologics that have not gone into remission, but he has developed very serious osteoporosis -3-4, spine and femur. I am very angry because just by making the transition to pediatrics, a part of the application is missing, but I understand that the lady is quite frustrated by the fact that I am not responding to the therapies.

[00:46:02]So what can we suggest to Mrs. Scarallo? Probably to ask for a second consultation, right? But now if this is the situation, the biologic drug she is taking has probably failed, now we have many very effective drugs for colitus waxosa. Then if the osteoporosis is due to the fact that she probably also took a lot of cortisone, I imagine.

[00:46:27]So let's try to correct this too because we still have time. From 18 to 20 years old, we accumulate calcium in our bones, so the calcium, vitamin D, etc. are depleted. At the same time, try an effective drug because if we don't go into remission, the disease and the problem will develop and not resolve. Here, we have the leftover drugs. He's 18 now, so I'll have them available.

[00:46:52]I imagine he'll be on anti-PNF now and he could pass another sentence and there's a part of the question, but professor, let's reiterate how important it is not to have long courses of cortisone because often cortisone is a bit like a 100-meter race, right? It works immediately and then it causes damage, right? We see that it's very important, so in colitis celiosa it's difficult to avoid it completely, but today we have alternatives and prolonged corporal therapy is very harmful to the bones, to growth, and to disfiguring hips, so we have some really effective alternatives today, so I think we need to prolong these courses.

[00:47:46]This is important. This is very important, it applies to both adults and children. Absolutely.

[00:47:54]Let's say I am, as we can see from the mother's question, you can understand how much the illness is impacting this boy's life.

[00:48:04]So the question, I want to ask Dr. Renzo. How much does the illness weigh on the daily life of a child or adolescent?

[00:48:12]The illness weighs heavily, and it's also important to acknowledge this to families so as not to generate further frustration.

[00:48:21]Because it requires therapies, it requires symptoms that we must somehow manage, it requires days of school because to carry out procedures, perhaps to come for check-ups, therapies, it takes up days of work for the parents. So there is certainly an impact, a significant impact on the family's daily life.

[00:48:50]But how can we help a child not feel different, limited by illnesses? Clearly, I'm referring to what a pediatric gasterologist can do, because this is a, let's say, a type of care that must be guaranteed by bringing together different professionals. From your point of view, what can be done to... Can you help you?

[00:49:12]Well, we definitely can. We start from our own practice, obviously paying attention to the type of therapy we use—it was rarely mentioned—even just the effects, for example, of the corpoid, which we try to use as little as possible when necessary. This is precisely why we must remember that a cosmetic effect, which may seem minor, is not at all for a teenager. Absolutely.

[00:49:41]Another aspect to consider is also trying to choose therapies that are preferable where possible, therapies that can be managed at home, trying to limit the demands, the pre- and post-treatment times, for example, endoscopic procedures, and in any case involving the support of a professional, for example, a psychologist who can help us, specifically in managing the fears, anxieties, and issues that are close to these kids' hearts.

[00:50:14]We invite them to talk, to confide in us their fears, because often children and adolescents have tumors and have doubts that are not expressed.

[00:50:25]When they are expressed, we may respond, and with a pleasant surprise.

[00:50:30]Surprise, the adolescent or child tells us, "Ah, that was the answer," and so we dismantle a whole structure that was based on something unsaid, something imagined. So this discussion is very, very important.

[00:50:47]Professor Lionetti, we all know that at a certain point in the process, not all patients need the support of a professional, such as a psychologist. How useful is it, in your opinion, to involve him in the treatment process?

[00:51:05]Yes, it's certainly important because it gives a hand to the patient and the family to accommodate this, which is an important variable that enters into work-life, and it also helps us because it helps with communication, with knowing how to reach the patient and the family with our messages, because the more aware you are, the more ready you are to accept what the professional, let's say, proposes. So we generally always have him alongside us, possibly from the moment of diagnosis, precisely to help us also in communicating the diagnosis.

[00:51:44]But does the dialogue with the patient change when we move from child to adolescent? Is there a change in the dialogue on your part?

[00:51:56]I ask Professor Lionetti, and you too, Dr. Renzo, don't you? There's a problem.

[00:52:00]If you want to answer, who wants to answer? Yes, yes, I'm particularly interested in this because it's a key point. This is because, as long as we're talking about children, it's true, we involve them and try to use words they can understand, but then we actually look at the parent. However, when they grow up and become adolescents, it's essential to involve the boy or girl from the beginning, also so that they become aware of what the illness is, how to manage it, preparing them for when they will have to face it first, even in its management, because by explaining to them that they already experience it firsthand, they just need to learn how to manage it. And it's very nice when, perhaps with slightly older children, we offer the possibility of a few moments, a few minutes of visits, if the parent agrees, in which we are alone with these boys or girls and they open up and ask us questions they would never have the courage to ask in front of their parents. So it's very important because it changes, the child and the adolescent change.

[00:53:08]So I can add one thing: we have the flaw of always talking to the parents because maybe we have We were children and we continue to look at the parents. We have learned from the transition over the years that it is very important to talk directly with the kids and somehow hold them accountable because the tendency—I understand it humanly, psychologically—of families is to be overprotective and continue to be so even when they have become mafia. So, in short, it is important, no, as you said, for our part, to involve them and hold them accountable.

[00:53:50]I would like to ask you a question and since we talked about transition, why should we start talking about transition and I'll add another.

[00:54:00]What are the questions that parents ask most often after the diagnosis?

[00:54:09]So, as far as transition is concerned, we do it after 18, but after 18 and it has to be done, we don't have to continue following these patients. The problem is to start talking about it earlier, both with the parents and with the kid and also, as you suggested, the adult center where the tradition is carried out. This is then also decided by the family and then we can manage to do it. Various joint visits with adult colleagues is difficult, but we do it at an outpatient clinic, a clinic, a small outpatient clinic at the time of the transfer with the adult colleague who comes to our center and we introduce the family and I think this is very, very useful and I don't know if you would like to add a little to the question Salvo asked, which families often ask this after the diagnosis? After a diagnosis they ask if, well, what kind of life will the children have. They ask what they can eat and this is another question that is then asked in practice and they ask if it will be possible to recover. And so it becomes important to explain the concept of chronicity, which however is different from the concept of being chronically ill. We say that it is a chronic disease that must be managed with visits, therapies, check-ups, but this does not mean being chronically ill.

[00:55:55]Yes, yes. The question for the Excuse me, Professor, no, I was saying, since these are widespread diseases, let's face it, in rich countries there is a lot of research, there is a lot, so it's not I know, in 10 years we will definitely have at our disposal. I've heard a bit about my past, we have today. Well, they 're not diseases, well, this needs to be clarified. This is a point, let's say, favorable for the future of these young patients.

[00:56:27]And what are the most promising areas of research in this regard in pediatric patients? If there are any, I'll ask you, Professor, or Dr. Scarallo.

[00:56:36]I'd direct the question to the young researcher from Scarallo. Thank you for the question. Well, in my opinion, one of the most pressing areas concerns the personalization of treatments, because as we've said several times in, let's say, during this webinar, we've really seen the therapeutic arsenal at our disposal explode over the last 20 years. What we're still missing is understanding which patient to give which drug to, that is, identifying possible markers of predictors that can tell us that patient A will respond better to drug B, C, or D, or will not respond to drug E, rather than creating a sequence dictated, sometimes even trivially, by the timing with which these drugs were approved. Well, in national health systems, those that are available first for regulatory reasons, and clearly the other intriguing part of the research concerns non-invasive monitoring, that is, using technologies to monitor these conditions more closely to anticipate relapses and in a less invasive way. I'm thinking of the use of wearable devices for early monitoring, even the prediction of events such as relapses. This is perhaps more of a future, perhaps already a recent future. Well, I talked about wearable technology data, and I'm thinking of asking you a question about what role registries, clinical data, and new technologies such as artificial intelligence can play in improving the treatment of these pathologies.

[00:58:32]Scarallo.

[00:58:33]Well, we are very fond of it because, as a society, in Italy, we have a registry of these pediatric diseases.

[00:58:40]It's a registry that helps us understand them better because, it's true, they are no longer rare diseases, but they are not as frequent. Clearly, the registries, the data that are starting to contain more and more information, and the new technologies help us. They will help, they will help us, and they will help us increasingly. To extract significant data that our eyes may not be able to clearly interpret, but which will help us better understand these diseases. I'm talking about trends over time, response to therapies, and mischaracterization. It's essential to have registry data and the supporting technologies that allow us to analyze them.

[00:59:29]Professor Lionetti, let's get started. I'll ask the last two or three questions and then we'll wrap up.

[00:59:35]This discussion was truly very interesting.

[00:59:38]Well, I'll ask you a question, Professor Leonetti. What message would you like to give to a parent who has just received their child's diagnosis, and what message would you like to leave directly to the kids who live with these diseases, so with acupuncture, with chronosarcoma, and acupuncture?

[00:59:55]Well, it's not easy to answer this question, but perhaps I would tell parents to have faith in science, to be treated at a center with experience, because it's important in our work to, so to say, study, but at the same time also have experience, because it's still a job that requires this, so it 's not mathematical. So Confidence in the future, confidence in choices, and confidence in what we'll have available in the future. At the same time, I'd say to parents, let's make these kids responsible, let's make them aware of the problem they have, and let's make them independent, because this is a general problem that we serve as pediatricians.

[01:00:48]Often, kids who entrust themselves to others have little responsibility, even when they're over 18. In short, it's about being independent. And as far as the kids are concerned, having confidence in the future is concerned. These are conditions that can be treated, and they can have a normal quality of life, but at the same time, they also need to have the certainty that they don't have to pay for checkups. What I always say when we abandon them is that they go to adult centers, which have huge numbers. Well, I recommend that you remember to go to appointments, because sometimes we don't show up, or we call because you did n't show up. You can't ask this of adult centers, which have huge numbers, and therefore follow up in order to avoid further problems.

[01:01:42]This gives me the opportunity to make a Question: Dr. Renzo, what does caring for a young patient with inflammatory bowel disease really mean beyond simply prescribing a treatment?

[01:01:57]We don't treat the disease, we don't treat the child just for the disease. It's about taking care of the child as a whole, taking care of his life at that moment, ensuring he can navigate his life experiences at a particular age, that of childhood and adolescence. And why not also take care of the family, trying to make them aware of their needs, their necessities, meeting them wherever possible, all united in the fight against this, therefore, it's not about taking care of the disease but taking care of the patient as a whole. My last two questions, one for Professor Lionetti and then the last for all three of us. Professor Lionetti, it comes to mind, has known us for several years because he has been working with the association for a very long time, but more importantly, he is currently a member of our foundation's medical-scientific committee. Professor, I'm asking you how we, as patient associations, can be more helpful to families and children.

[01:03:11]So, first of all, there's been exceptional progress because before, patient associations really weren't unaware of the pediatric problem. How can you be more helpful to families, guys? Well, let's say by supporting them with events like this, I mean, I think it's extremely useful that you took this initiative and spoke for an hour only to pediatricians, right? And at the same time, in any case, scientific material, holding meetings, also because, well, I would suggest holding meetings with parents, that is, in the various regions. Take up this activity because, let's say, sharing your problems with others helps a lot in managing the problem you have, that is, knowing you're not alone, but there are many of us with this problem, and in any case, I congratulate you because these initiatives are very good, I imagine there are a lot of people connected, right, Salvo?

[01:04:17]Yes, let's say, they're different, they're different on the various channels, so let's say and then I remind you that this live broadcast will be made available later to be visible not only live but also recorded, so it's a message, let's say, all the messages you 've sent today will then be a something we will make available to the community of parents and patients we represent. From our point of view, it constitutes a heritage to be treasured. Now, I have one last question for all three of you. If you had to summarize in one sentence the most important message to leave families today, what would it be?

[01:05:00]Let's have the doctor start.

[01:05:04]So, I would say that the main thing is to rely on the right centers, as we said before, centers with experience, centers that can guarantee excellence in care and communication, to rely on and obtain information through the right channels, for example, the Amici association.

[01:05:27]Yes, here is a message of trust that in Italy we have Bonenti, we are at international levels, we are, so to speak, in constant contact with all the international centers, so you can have excellent quality of care and we are grateful that the national health system still exists because these conditions can also have very low costs because in Italy we still have a national system at the national level that meets these difficult needs. Yes, it's difficult lastly, but I'll try. Oh, in addition to trusting, it also means having faith in the present and in the center that You have to rely on these, but overall on the quality of care we can guarantee now and on having hope for the future. If, as Professor Lionetti says, the last 20 years have seen such a radical change, what we can expect for the future is at least as rosy.

[01:06:33]Well, we've come to the end of this meeting, and I'd like to truly thank all of you for joining us. A sincere thank you, of course, to our speakers for their expertise, but above all for their ability to make complex and important topics accessible to the daily lives of patients and especially their families. We say that these are family diseases because if there's a family of four where there's a patient, there are four people who suffer the discomfort of having this disease. This is why it's important to educate not only about the patient, but also about everyone around them. A special thanks today goes to Lilli for her unconditional contribution that made this live broadcast possible and the entire journey we're building together in view of World Inflammatory Bowel Diseases Day, which we will celebrate, I remind you, with an in-person event on May 17th in Padua.

[01:07:31]Participation in this event is free, but registration is required.

[01:07:36]I invite all those connected, whether in the Veneto region or outside of the Veneto region, who would like to participate to visit our website and fill out the form. However, this is just the beginning, as we have a whole series of preparatory initiatives before arriving in Padua. In this regard, I invite you to join us tomorrow morning at 10:00 a.m. for a new event dedicated to an increasingly central theme. Tomorrow's live broadcast is entitled: Nutrition, Microbiota in The meta-inflammation pandemic: a role in the feline gut.

[01:08:13]We will have with us Professor Antonio Gasbarrini, scientific director of the Fondazione Policlinica Universitaria Gemelli, professor of internal medicine at the Università Cattolica del Sacro Cuore, and director of internal medicine and gastroenterology at Cema Roma. It will be an important opportunity to delve deeper into the connection between nutrition, microbiota, and inflammation and better understand what we can concretely do to take care of our gut.

[01:08:40]Thanks again for joining us, we look forward to seeing you tomorrow. Until we meet again. Until we meet again.