00:00:00: Hello there, welcome to this episode of the UEG Talks.

00:00:03: I'm Pradeep Mundre and I'm your host for this episode.

00:00:06: Now, the way adult patients are cared for by gastroenterologists seem to be very different from how pediatricians treat children with chronic GI conditions.

00:00:19: I guess the approach is different, the attitude towards the disease and the involvement of carers and the time spent differ.

00:00:28: And even to an extent that the guidelines, the approach from the national societies varies depending whether patients are cared by adult gastroenterologists or pediatricians.

00:00:40: And I guess this creates a cultural shift in the way care is received by our young adults with chronic conditions or chronic diseases when they transition from pediatric services to the adult services.

00:00:56: And often these are the patients available during the transition and it's unsettling and challenging for them.

00:01:03: And the topic is so important that the UG working group to release the UG transition care report, I guess to raise awareness about the topic and amongst both the clinicians and patients and caregivers, so that this will help us as clinicians to include in that little practice.

00:01:24: And today's discussion is exactly about this one, about transition of care for our young patients from childhood to adulthood.

00:01:33: And joining us today are two guests.

00:01:35: Firstly, I'd like to welcome Professor Patrizia Burra, a professor of gastroenterology at Padua University Hospital in Italy.

00:01:44: Patrizia is also the chair of public affairs group at the UEG.

00:01:49: Welcome, Patrizia.

00:01:51: Nice to meet you.

00:01:52: Love you.

00:01:53: And joining the three here today is Dr.

00:01:56: Jorge Amil Dias, who's a pediatric gastroenterologist at Hospital Luciadas in Porto, Portugal.

00:02:05: Jorge is also a member of the Public Affairs Committee at the UEG, representing the ESPEGAN, a European Society of Pediatric Gastroenterology.

00:02:15: Welcome, George.

00:02:16: Hello.

00:02:17: Good morning.

00:02:17: Thank you.

00:02:18: Okay, maybe the first topic of discussion, maybe it's for both of you, or maybe I can start off with you, George.

00:02:25: What do you mean by transition care?

00:02:28: I guess some of us are aware, maybe the trainees are probably not particularly aware about the concept of transitional care.

00:02:38: What do you mean by that, just in simple terms?

00:02:42: Well, thank you.

00:02:43: In pediatrics, we have family-centered care.

00:02:47: We look after patients while children, we speak a lot with the parents or the guardians, although the child is always in the center, the patient is the center of our concerns, but we have a dialogue with the whole family.

00:03:05: pediatricians tend to be very flexible about attaining appointments, adjusting timings, patients about some difficult issues with adolescents.

00:03:18: So we tend to be rather compliant with the requests and the needs of the patients and the families.

00:03:26: The adult world works in a different set of terms.

00:03:30: and it's, well, both of them are right in their own context, but adult care is centered on the patient and the family is very secondary to this and quite often is left outside the room.

00:03:46: So moving from one scenario to the other requires progressive effort so that everyone feels happy and is adjusted because Whenever there is no structured transition process in many specialties, it is well documented that the prognosis of the patient gets very worse.

00:04:07: Quite often they drop out, they miss appointments, they stop treatment, and they come back much later with a much worse prognosis.

00:04:15: Therefore, having a smooth area where they start adjusting to the reality of the adult world of self-empowerment is quite important and this takes a bit of science.

00:04:28: There are rules, there is science to it and all the health professionals but the physicians as the front row must be well trained and aware of these specifics.

00:04:41: Okay, I guess, you know, a lot of us are not aware of this process, I think, for a clinician.

00:04:48: It's like, okay, you're sixteen.

00:04:50: I discharge you from my clinic.

00:04:52: I refer you to Professor Burra, and there we go.

00:04:55: Goodbye.

00:04:56: And that's what happens.

00:04:57: I guess what you're saying is transition care is that structured, multidisciplinary approach, and there's a method to it rather than just, here we go, and discharge.

00:05:09: Absolutely.

00:05:11: As I said, pediatricians tend to be very flexible, but they also need training to be aware that the adolescent becoming a young adult has been powered, has to know about his or her own disease and their medications.

00:05:28: They have to speak up about their problems.

00:05:31: So this process requires that pediatricians start progressively and this takes quite a bit of time and this may take more than a year start to address the patients on themselves and ask them to speak up for themselves so that they start being prepared for this situation one day when they will be the only the only person facing the physician and this is quite important to train pediatricians.

00:06:02: but it is also important for the adult gastroenterologists to be aware that they are receiving resilient people who are not very disciplined, they have their own views and they are quite opinionative about things.

00:06:17: So the adult positions also need to be flexible for a while and adjust these patients to the new terms and the new reality.

00:06:26: So it's a process that takes time and needs coordination and there are some rules.

00:06:33: I mean, it's not appropriate to hand over a patient in the acute phase of the disease.

00:06:39: I mean, we need to stabilize them first to get them into remission and then hand them over on calm sea, so to say.

00:06:47: So there are some rules that everyone needs to learn in order to coordinate and to promote very smooth transition.

00:06:57: George, you mentioned that it's important because it affects the outcome for our patients.

00:07:03: And maybe I would like to kind of get both of your opinions on why it's important.

00:07:09: Other than the health outcomes, let's say, resulting in harm to our patients, if transition care is not done properly, are there any other consequences that are important?

00:07:21: And maybe Patrizia may have seen the consequences when they present as adults loads of complications that things are not done properly.

00:07:27: Maybe I can get both of you views on that.

00:07:30: Maybe Patrizia first.

00:07:32: Yeah, thank you.

00:07:33: Thank you.

00:07:33: Sure.

00:07:34: Correct.

00:07:35: So what's happened?

00:07:36: is that a little bit of a background.

00:07:40: I'm quite positively saying the vision about the transition since I remember when we started some years ago, not so many years ago, but when we started to collaborate with ESPA again.

00:07:50: That was a good way to move forward and to produce and to publish the position paper.

00:07:57: That position paper was published in twenty eighteen and that I, in my experience for the liver disease, it was the first time that there was a connection between a spaganine easel.

00:08:08: At that time I was then part of UGPAC on behalf of PIZZL.

00:08:13: And we were really starting from something like not generally accepted optimal pathways of care.

00:08:19: for the transition from pediatric care to adult health system.

00:08:23: So I believe that that was a very important step forward to have a dialogue in between pediatrician and adult gastroenterologists.

00:08:34: And that is the first thing.

00:08:36: Correct that if we make some not appropriately say transition, then at the end, the patient is not happy, the caregiver is not happy, the family is not happy.

00:08:46: So we really needed to find out the best way to coordinate.

00:08:50: Now we have different styles, different approaches in different centers, but at least we have identified the age.

00:08:56: So it is important to agree on with the pediatrician that it's not only one phase.

00:09:02: The transition program includes several phases.

00:09:04: Including several phases, we need to coordinate the right time to start.

00:09:10: Maybe to talk with the patient with their children, can be adolescent.

00:09:16: I agree that we start to talk in between twelve to fourteen.

00:09:20: We start to say something to the family.

00:09:22: But then we have another phase that went in between sixteen to eighteen before then moving probably around eighteen years of age to the adulthood system.

00:09:33: Surely we define that it doesn't make sense to do that later.

00:09:39: And as Professor Diaz said, we need agree on the transition.

00:09:45: feasibility, evaluation step by step.

00:09:49: We combine visits, faiths in the middle, and that is the exclusion.

00:09:54: And I have the impression or the experience that in the last five years several new approaches being really put in place.

00:10:03: And I think also the expectation that we have to consider from patients, from families, are better than it was in the previous year.

00:10:11: So that is my opinion.

00:10:15: Still, the adolescents are the most difficult ones.

00:10:19: The pediatricians tell us that the adolescents are not small adults, correct?

00:10:23: And when they come to us and they talk about the flexibility, yeah, yeah, correct.

00:10:29: We are not that flexible.

00:10:30: We are used to the adult population.

00:10:32: But I think now we coordinate together.

00:10:35: The adolescent group are the most difficult to manage.

00:10:38: And I think they have different expectations.

00:10:40: They feel, they tell them they're too many things.

00:10:43: They are used to have the family, the parents give us to do everything.

00:10:47: When they come to us, they are not really used even to concede and to read the letter or to consider the drug they are taking.

00:10:54: So that is, I think, is the population attire risk of poor compliance, not because it's intentionally done, but because they really don't know exactly what they have to do after the transition phase.

00:11:08: So you're saying the whole process starts at the age of twelve and continues beyond eighteen.

00:11:16: Is that correct?

00:11:16: Is that when clinicians need to start planning how they provide the transition services?

00:11:23: Do we need to start so early or do we need to wait until?

00:11:27: That is when it depends on where the pediatrician have settled the stage.

00:11:32: So I'm just saying that if you talk to the, not to the little patient, but if you talk to the relatives and to the parents, you say, you see in three, four, five years time, you will be seen by another team.

00:11:46: So I think the perception of having a process that will take years, that's fine.

00:11:51: If you do that a little bit in a hurry, I think there will be not the perception by, not in particular, by the patient, by, I think, the parents are the crucial figure in this process.

00:12:04: So, personally, I'm happy when they started around the fourteen years of age, fourteen, fifteen is fine, but not later than that, to discuss within the pediatric team.

00:12:13: Lovey.

00:12:14: And when I think about transitional care in gastroenterology, the only thing that comes to my mind is IBT.

00:12:20: I'm going to show there are other more important.

00:12:26: Let's say on a practical note, I've joined a new unit where there's no organized transition care.

00:12:33: I want to set up services.

00:12:36: I want to liaise with my pediatricians as an adult gastroenterologist.

00:12:39: I want to set up that service.

00:12:41: What are the disease areas that I should be focusing on?

00:12:45: The reason why I think we should be aware that these services will be most impactful.

00:12:50: They're introducing such services.

00:12:53: will mean a huge difference to our patients.

00:12:57: What are the disease areas that you think are the most important?

00:13:00: In principle, all patients with all gastroenterological diseases need to be followed up in this way.

00:13:07: Of

00:13:07: course, there will be a difference if you have a rare disease or if you have a celiac disease, there will be also an adult disease in Sylvester forever.

00:13:16: IBD should have a follow-up forever.

00:13:18: And I think Professor Dr.

00:13:20: Mille knows that much better for the transition.

00:13:25: Liver disease is the same.

00:13:27: So if you have the transplant setting, it's even more difficult.

00:13:33: I would say that there is no gastroenterology disorders or disease or pathology that shouldn't need to be a follow-up forever.

00:13:42: And I leave to Professor Diaz now to comment regarding the work he thinks he's got to regarding that.

00:13:50: Well, thank you.

00:13:50: Yeah, I completely agree with Professor Patrice Bura that most chronic conditions or all, so to say, chronic conditions need some type of follow-up.

00:14:03: I would say that probably celiac disease, if the patient is very well adapted to the gluten-free diet and knows exactly how to choose, how to address the parties and dining out with friends, and they, by eighteen, they are fully in control of that, then the handover process is quite smooth and it's probably not a big problem.

00:14:29: On the other hand, if you talk about transplanted patients, if they stop treatment, then we know they are at a very high risk of having rejection and having serious conditions.

00:14:42: In the middle, I will talk about isonophilic isophagitis or IBD.

00:14:48: because if patients stop treatment, they will not get worse immediately or in a very short term, but in the medium term, the probability of having complications, having abscesses, fistulas, or severe food impaction in the case of illness and affiliates of vagitis, then the issue is real.

00:15:12: So having them adapted to the new terms in the follow-up of their disease, is crucial in order to have a good evolution.

00:15:22: Of course, the complications and the severity of complications is different in the case of EOE or if you talk about the transplanted patient.

00:15:32: But the overall concept is equal.

00:15:35: And I would like to go back to the question that you addressed about issues or complications beyond the pure concept of the disease.

00:15:47: Yeah, and quite often these diseases require some sort of social behavior.

00:15:55: I mean, even sexual behavior in case of patients with IBD that may have fistulizing disease and they may feel uncomfortable and they need to discuss that.

00:16:07: So these are issues.

00:16:10: There is a variance in paper that Professor Bure knows well about the evolution of liver transplanted patients who were properly followed or who were not so well followed in time and the rate of complications.

00:16:27: So also cultural adaptations to the diets and the family and their partners and all of that.

00:16:35: So that's part of the whole issue that needs to be addressed.

00:16:40: progressively as they grow up so that they feel comfortable when they are on their own as adult patients and they are already very well in control and manage all those aspects related to their disease.

00:16:55: Thanks, Joe.

00:16:56: Now, we already mentioned, we discussed that there are discrepancies in the pediatric care and the adult care.

00:17:06: I'm sure you both will have different views on, you know, maybe profiteers, you would say that these are the things in the adult world need to change or modify to have a biggest impact.

00:17:19: Are there any particular areas you think from your point of view that the adult gastroenterologists need to, let's say, adapt?

00:17:28: which will probably have the biggest impact.

00:17:30: Then I'll come to Professor Burra about what you think as in pediatrics, what things may need to change at the teletransition.

00:17:38: I'll start with Professor Diaz first.

00:17:40: Okay, thank you.

00:17:42: Yes, indeed, there are some aspects.

00:17:44: And then again, the example that first comes to my mind in that particular regard is IBD.

00:17:51: We know that a number of drugs, a number of medications come into the practice for adult patients and quite often biologics take at least ten years to be introduced into pediatrics.

00:18:06: So there are a number of drugs that we know that exist but it's quite difficult and although we can use them off-label, but on a restricted basis and after quite the tedious process where parents feel they are being exposed to experiments and things, so there are some barriers to the use of these new drugs.

00:18:31: And when the patients go into the adult clinic, it's very tempting to say, well, I have this drug to give you and change treatment.

00:18:40: We need to have agreement with our adult colleagues that we agree on common protocols, at least for a while on the transition phase.

00:18:53: Because if a patient is moved from my clinic to your clinic, and then you say, stop all of that, I'll give you something different, then they become very puzzled and very anxious sometimes.

00:19:06: I've had cases where they come back to us and say, well, the other doctor told me to do this and that.

00:19:11: What do you think about it?

00:19:13: It's quite embarrassing.

00:19:14: So it's not a matter of being right or wrong.

00:19:18: It's a matter of the patient understanding that some change in the treatment protocol may be needed.

00:19:25: But that should be deferred in time and not changed immediately because we want the patient to trust the other physician as much.

00:19:35: as they trusted us for many years.

00:19:38: So this is a good example where this handover process needs some basic rules.

00:19:45: And if you allow me just to address the age of starting the process, varies very much from one patient to the other, from one center to the other.

00:19:55: It's not so much starting a process, but it's empowering the patients.

00:20:02: Nowadays, and being more and more aware of this when I see a patient of the teen or fourteen, and I ask them, what is the problem?

00:20:10: How are you being?

00:20:11: And they look at the parent and I say, I'm talking to you.

00:20:14: I'm sorry.

00:20:15: One of these days, you'll face a doctor and you have to speak for yourself.

00:20:19: So please talk to me and then we'll check with your parent or your mom.

00:20:24: So this is part of this process that needs to be started well in advance.

00:20:30: So they learn how to speak for themselves.

00:20:33: So, it's a very interesting process that requires some basic rules and should engage also other health professionals that monitor the family and they tell us, while we call them the coordinator, who checks when the family and the patient are mature for the next phase of the process.

00:20:55: Okay.

00:20:56: So maybe I'll come to you Professor Burra.

00:20:58: There's a lot at stake from the liver disease point of view.

00:21:01: There's a lot at stake when host transplant patients.

00:21:05: Are there any areas where you think pediatricians could do differently or need to inculcate certain practices that would help better outcome for these patients?

00:21:19: clearly?

00:21:21: there's a massive things at stake for such patients.

00:21:24: Is there anything that you've noticed in the opulent practice?

00:21:27: Let's

00:21:28: say that I will do the opposite.

00:21:31: In this case, I think pediatrician have in the experience of liver diseases, they're not necessarily a liver disease of the adult.

00:21:40: So the problem is just vice versa.

00:21:42: I have colleagues, hepatologists, that they are only adult hepatologists.

00:21:47: you really need to learn what is the different onset of liver disease or different diseases in children in pediatric care.

00:21:55: It might be really different diseases we don't see in the adult population.

00:21:59: That is the problem.

00:22:00: So I'm saying that if you follow patient transplanted during the pediatric age and they have the disease, any kind of disease that you do see also in the adult population, fine.

00:22:12: However, if you the pediatric population of the children have been transplanted for a disease, there's a typical pediatric disease that doesn't really commonly exist in the hospital.

00:22:22: population, you need to be prepared.

00:22:24: You need to go and to understand what you're talking about.

00:22:28: So

00:22:28: I think then the principle of the transplantation, the adherence to drugs, the risk, the higher risk of rejection of chronic rejection in the pediatric population, transferring into the adult health system is being confirmed, unfortunately, by several studies.

00:22:46: But I think what is important, I totally agree with George said, in the years ago it was important to start the process.

00:22:54: Now we have to talk more.

00:22:56: The communication between the different teams are involved, which not necessarily mean in general pediatrician, in general gastroenterology of the adult population, we can have some other figures.

00:23:07: depending on the kind, depending on if they need a psychologist, even if they need, let's say, an infection disease, especially.

00:23:13: So the multidisciplinary today is important.

00:23:18: And I think, as George said, nobody's right or wrong.

00:23:23: But at the end, only if we create formally a multidisciplinary group dedicated to the transition, it will work.

00:23:31: And I have to say that after... I've been trying for several years to develop that.

00:23:37: Now the product was launched in my hospital in twenty-twenty-three, so less than two years ago.

00:23:43: It's working now for all the diseases, but it took years before really having a formal group within the hospital that involve all the professionals at different level.

00:23:53: And now I really hope it will work.

00:23:56: Just coming back to what George said about the IBD.

00:24:00: When we have IBD, with the first onset of the disease, in the eighteen, nineteen years of age, so it's already adult population, it's terrible,

00:24:11: because

00:24:12: they, so not transition, because they had the first onset of the disease.

00:24:16: when they are already, let's say, adults,

00:24:18: but they

00:24:18: have, we face immediately challenges with medical, They are not used to self-manage the care routines, let's say.

00:24:29: If you say something, they feel that we tell them we give too many restrictions, physical activity, sexual activity, as George said, or even they have the excuse about the schooling.

00:24:41: or academic delays.

00:24:44: so i think the population of the young people whatever they come from the transition that is much better or they had the first tons of the disease and i bd is the right example.

00:24:55: that needs attention.

00:24:58: Okay.

00:24:59: And clearly there's a bit of cultural shift on how adult gastroenterologists are with their patients compared to pediatricians.

00:25:07: Are there any other aspects of patient care that are not addressed properly?

00:25:12: What are the care aspects that are done very well in pediatrics that we don't do in the adults?

00:25:17: I think that's important for us to know.

00:25:19: I think we discussed most of it.

00:25:20: Maybe there's anything that we missed?

00:25:23: Yeah, if I may pick up your topic.

00:25:29: I would like just to mention two specific issues.

00:25:34: As Patricia just mentioned, there are diseases that are quite specific to pediatric population that fortunately grow up to adulthood, which are not so often seen in the adult population.

00:25:49: One that comes to my mind is intestinal insufficiency, short bowel syndrome.

00:25:55: Well, while the adult patients have it from usually acute onset from accident or vascular accident or neoplasia, the pediatric patients usually have it from birth.

00:26:11: They are born either with malformation or they have a severe intraculitis that requires massive resection and they live all their lives on parental nutrition and family is part of the treatment group.

00:26:29: Family has been there all the time.

00:26:31: There are carers who take care of the various issues related to the regular provision of PN.

00:26:39: And these patients are different to the adult physician.

00:26:44: Therefore, there are special groups where the adult physicians need to be aware because it's a new disease for them, some metabolic diseases that used to die within a year or two, and now they get into adulthood.

00:26:58: So this is one area where the adult physicians also need to be aware and prepared to take over these patients.

00:27:07: And the other aspect is having programs.

00:27:10: Having programs at institutions is fantastic, and it is good.

00:27:15: Some are suddenly more advanced or more structured than others.

00:27:19: However, we also have to keep in mind that patients often move from one city to another.

00:27:25: They move hundreds of kilometers away near a hospital where the transition program is not being implemented.

00:27:33: Therefore, we also need to address the training of physicians.

00:27:37: And in this regard, UEEG has been actively trying to prepare some syllabus, some basic rules that should be part of the training of both pediatricians and adult physicians so that wherever you practice and you receive a young adult, of course, you need some health passport with information about the history of your patient.

00:28:02: But you already know the basic rules that should be followed in order to promote peaceful and smooth transition.

00:28:10: So these two aspects in my opinion are also relevant.

00:28:14: Yeah, I'm glad you mentioned about the curriculum.

00:28:17: First time I became aware of any such process transition is when I was a consultant fully fledged.

00:28:24: So I never was even exposed that this thing is an important issue and I would need to learn about it.

00:28:32: And I was going through the transition care report by the EEG of both of your authors.

00:28:39: And it sets out a very detailed scientific way and detailed objective way of the transitional process.

00:28:49: And maybe you can give an example.

00:28:52: what's the best, you know, just some practically.

00:28:55: how does the transition, how would an ideal transition process look like in terms of structure?

00:29:03: I know it's difficult to explain everything, but maybe you can give us, what would you do?

00:29:08: Maybe explain with a patient journey, take an example, IBD patient and say, what do you do?

00:29:13: When do you get, let's say, Professor Burrainwald and how do you transition?

00:29:18: Do you join clinics?

00:29:20: Is there any way you can just briefly explain that?

00:29:24: I think surely the pediatrician should have the first go.

00:29:28: That is my opinion.

00:29:30: I've been collaborating with them since ever.

00:29:32: I believe we have to learn since the system and everything, starting from the pediatric age and pediatric disease and moving into the adults, I think we have to listen to them first of all.

00:29:44: I believe as the experience in my hospital, we definitely need, I'm sure, George, agree on that, establish comprehensive protocols.

00:29:54: We have to agree together, as I said, including also some other professionals, some other experts in different diseases.

00:30:02: I totally agree with the fact that the passport is because we need the patient's medical history.

00:30:08: The worst thing that can happen when you have the transition and something is missing, and you do in the adult setting a little bit in a hurry comparing to the pediatrics setting and you miss something because the history is crucial.

00:30:24: So patient medical history should really clearly report and the gastroenterology of the adult healthcare system should know the history before.

00:30:33: Then,

00:30:34: George, we need the dedicated transition coordinator.

00:30:39: As medical doctors, we are doing a lot.

00:30:42: We try to do our best, but we need a professional.

00:30:45: We need a coordinator that is really usually a nurse dedicated to the process that will make a big change, an enormous change in the efficacy of the system.

00:30:58: And with the common aid to ensure, how to say, the continuity of care.

00:31:06: the patient, the family relative, they should not really feel that is something that is doing a different way and they don't feel safe.

00:31:16: So I think the continuity of care is crucial.

00:31:20: And so we're still missing, I believe in European level, the interdisciplinary communication.

00:31:26: So this is my message.

00:31:29: Anything you'd like to add, George, for that in terms of the setup?

00:31:33: Yeah, thank you.

00:31:35: Yes, I completely agree with Patricia.

00:31:40: Most of all, we need awareness and common sense.

00:31:43: We need pediatricians to start empowering the patients progressively and leaving the parents slightly aside and they can't comment.

00:31:52: They can be part of the process, but they have to understand that their child is growing and has to fly on his or her own.

00:32:01: We need that, but we need adult physicians to be aware of the specifics of the young adult.

00:32:09: And even if you don't have a structured transition program, it would be fantastic that you have at least a nurse that is a point of contact for the patients and the families for a while and introduces a team and the settings, the location, so that everyone feels comfortable in the new setup.

00:32:31: coordinator, the transition coordinator goes on monitoring how mature, how apt the family is, and some patients may be transitioned at seventeen, others at nineteen.

00:32:43: I mean, we do not need to be square about that.

00:32:46: We want to transition patients when they are on a stable phase and when they are comfortable with being fully empowered to take care of their health.

00:32:57: And for this monitoring, there are available tools, there are inquiries, the ready steady and go, where this transition coordinator may check the lines and see if the patients know the drugs by their names, you know, who to call in case of complications.

00:33:15: I mean, a lot of things.

00:33:16: And when they are fully mature, then they can move on to the next phase.

00:33:22: Okay, so in summary, the points that I got in terms of the ideal transition process is a good patient, a good hand over a patient record from one service to the other, a transition coordinator, empowering patients early use ed.

00:33:43: You mentioned about education for both pediatricians and adult gastroenterologists and establishing protocols within the region, within the hospital, and deciding on the ideal time of transition, because you said that varies depending on the phase of the patient journey, you know, don't hand over when they're acutely unwell and they're going through a huge change, you know, hand over at a stable phase.

00:34:07: So, okay, that's great.

00:34:10: I'm sure, you know, despite, Professor Borra, you said you introduced everything two years ago, and George, I don't know how long you've had such a formal setup in terms of handover and transition.

00:34:24: I'm sure you both would have seen examples of some mistakes or maybe there's some learning points, some practical examples.

00:34:33: I don't know if you remember, can you mention one or two?

00:34:36: I think it gives a bit of a practical touch to the discussions that we've had.

00:34:40: So I started myself with the liver disease nearly seventeen years ago.

00:34:46: The hospital.

00:34:49: the transition broke two years ago, but we started getting seven years ago.

00:34:55: Right, yeah.

00:34:58: I do remember a case, we picked up the different consultants in the adult carcontrologies, depending on the disease, because our patients are quite often separated, IBD clinic or liver clinic and so on.

00:35:14: So I picked up a fantastic adult gastroenterologist who is an excellent gastroenterologist, but was not fully motivated for this, the need of a smooth transition.

00:35:32: And one day when we had the joint clinic and we were handing over the patient and the parents asked him, well, doctor, in case something goes wrong, Who can we call you?

00:35:44: Can we have a phone

00:35:45: number?".

00:35:46: And he said, you call the secretary and leave a message.

00:35:49: Yes, but if we are worried or anxious, can we get hold of you and ask for an early appointment?

00:35:56: You call the secretary and leave a message.

00:35:59: So the parents were very anxious.

00:36:03: And outside the outpatient's room, I talked to them and said that He was a very good doctor, and he would be willing to take care of them.

00:36:14: But at that moment, they felt terrified because they felt they were completely left alone.

00:36:20: And we talked to him, the both of us, later on, and we smoothed that kind of conversation so that no one feels that they are changing from one world to an entirely different one.

00:36:35: So this was one case, while other patients had to refuse some treatments and then later are not transitioned at all.

00:36:44: And one day they come with with severe complications.

00:36:46: Those are some sad stories.

00:36:49: Fortunately, not so often recently, we've started our transition program about ten years ago.

00:36:55: So it's not perfect.

00:36:57: And it's a learning curve for both of us.

00:37:00: But it it meant a lot for our patients growing old and being on their own.

00:37:09: Any examples from your practice, Professor Böhrer?

00:37:12: What can I say?

00:37:14: When the first patient that is including the first paper that we published was seen in twenty-ten, it was the first patient with the transition, the results of the couple of years of attempts, let's say, to develop the transition with the pediatrician.

00:37:30: And George, when he came, he was a thirty-four years old, thirty-four, three-four.

00:37:35: And he came with the mother.

00:37:36: So that was my first experience.

00:37:38: Now it's much, much better.

00:37:40: So let's say that the process is there.

00:37:42: And I'm talking on behalf of both of us.

00:37:45: as a UGPag representative, I think to give the final message, the patient need to be informed in the proper way.

00:37:53: We needed to change also the way that they are expected from us.

00:37:58: So using Let's say modern resources, the videos postcast as we are doing, because the adolescent today, they are approaches different from what we believe.

00:38:11: And then from the part of the scientific societies, of course, we need policies, public awareness as George said, funding regarding this.

00:38:23: And that will really help a patient to engage also themselves activities and social interaction, interaction with us and with the scientific societies.

00:38:36: So on that note, Patricia, who is taking responsibility for, you know, of course, you know, you both have done a great job as part of the releasing the reports for education.

00:38:52: Where does the responsibility rest in terms of?

00:38:55: I'm sure it's individual clinicians responsibility, but to guide individual clinicians, are there any big things going on?

00:39:02: where?

00:39:04: which organization is taking responsibility?

00:39:06: There

00:39:06: is change in the culture about that.

00:39:07: Change the cultural meaning that you have to put this information when you have the class of students, medical students.

00:39:15: If you don't start from the medical school, of course they will become, they will be medical doctors without having the training.

00:39:24: So I think that is my point.

00:39:26: I always use a transition paper and I use the slides and I use a part of my with my class every year to talk about that.

00:39:35: And as you do, we have done the booklet.

00:39:37: I'm sure you will show in this podcast and the booklet that was created thanks to George.

00:39:42: And that is very important.

00:39:43: But I think ourself, each one of us as medical doctors in our hospital, in our university, we have to teach students medical school and the topic and this field of interest should be into the program.

00:39:55: Yeah.

00:39:56: So it looks like transition care is not just following a protocol, not just based on science, it's an art.

00:40:05: And because the issues are so complex.

00:40:08: And I guess experience matters the most.

00:40:11: Are there Any final comments before we wrap this?

00:40:16: George, anything else you mentioned?

00:40:18: I would like just to highlight what Patricia had mentioned about medical students.

00:40:25: I think that exposing medical students to clinics where we hand over patients, where we do the transition, would make them aware from early on in their practice, well before they choose which specialty they'll be doing in the future.

00:40:41: but also it would be in some places that is done, like in Rotterdam, where medical students are part of the team that accompanies the teenagers and helps them to transition and go beyond the worries and the scares they may have into the other tool.

00:41:11: all sorts of initiatives and help from anywhere is useful so that people feel that they are moving smoothly into a different world, but they're not being treated less well than they were for most of their lives.

00:41:29: Okay.

00:41:30: Once again, thanks so much for your expertise.

00:41:33: Professor Burra and Dr.

00:41:35: Diaz, we're going to wrap this up.

00:41:36: Thanks for your time today.

00:41:38: Thank you very much.

00:41:39: Have a good day.

00:41:40: Thank you.