Transition of Care - A general overview by Silja Kosolove

Ernica Transition of care videos, chapter one. A general overview by Celia Kosolova, general practitioner and adjunct professor in adolescent medicine. Let's have a look on how to get it right. First, a little provocative question, can't we just kick them out? Well, that's been tried and done, and it really does not work. If you just leave adolescents to survive on their own, they will not adhere to care in adult hospitals. Their health outcomes that you've worked so hard for in the pediatric sector will diminish, and many of them won't even survive. It's also very expensive. With poorer health always comes greater expenses. Emergency admissions and all the procedures that go along with it are always more expensive than if you get to plan the procedure and the inpatient care that is required with it. So I came up with this nice little acronym for you that you, it, it would be easier to remember the contents of this presentation. Uh, transition is a time in the life of young people that is often related with great anxiety. So if we take it calmer, we might get it better. Uh, We need to consider the clinical situation of the patient at the age and developmental stage of the patient, and these are very individualistic approaches to begin with, as are the life circumstances of the young patient, um, but then there's also system requirements moving from simple transfer to an actual process of transition. Our educating professionals that are Interested in this field and then also finally the resources and contacts that you need for collaboration. I don't mean to Put down all your clinical expertise, but I'd still say that assessing the clinical situation of the patient is maybe one of the easiest things to do when talking about transition. If the patient's situation is not stable, if they still require frequent inpatient care, all kinds of changes in their treatment regime, new surgical procedures, maybe that is not the best time to transfer the patient to a new staff and a new hospital and possibly a whole new area of the country. But then moving on to age. Calendar age is of course an easy measure. Uh, in many countries, the age limit from pediatric to adult care has risen in the last years and is now most often 18 years. Unfortunately, in Finland, the general limit of pediatrics is still 16 years. We're left behind. Um, But it also comes with many legal issues such as child protection. If a 16 year old is already transferred to adult care and then engages in some kind of risky behavior, Adult professionals are mostly not familiar with the legal requirements of making a child protection, um, notification and so on and and then the rights of the child are actually. Not properly addressed. Also, the social support systems in many countries change according with age. In Finland, uh, children under the age of 17 get a monthly small allowance from the country, and then it stops and, and you move on to the adult social support system. And of course hospital facilities. I don't know whether you visited our new children's hospital already. Did you see the movements on the wall, and no, it's beautiful, but it's not really meant for someone. Uh, 18 or 50 or so on, as I heard one of the patients here to be today. But there's a lot going on in an adolescent's life. That's what I want you to remember. The biological development is just one small bit about this, and that's the only bit that medical school really teaches you how to assess when does puberty start? When is it complete? Did it go according to the proper schedule? At the same time, there's great psychological changes going on in the young person's mind from very concrete thinking and the rules, do they apply to every single person in the same way. Slowly moving on to abstract thinking, but still you're bulletproof yourself. You can walk in front of a truck and the truck is supposed to stop because you were on the pedestrian crossing. And slowly towards understanding the difference between law and morale. Also, social transitions go on at the same time. Peer relations become way more important. Parents very, very much less so. And then towards being able to engage in intimate relationships where you're both partners and equals and so on. And all of this Has also been described really nicely by two Finnish colleagues already a couple decades ago, um, where the cognitive skills, uh, develop quite logically, but the psychosocial skills take a little dip during the teenage years. And of course the timing of these and the depth of the dip is very individual, so the developmental conflict seen between these two can be very, very great. Take any general middle school where with 1415 year old teens, and you'll see that this is true. As a school doctor, yes, I've seen it so many times. Uh, and again, if you only look at the physical development, someone aged 16 may be already way taller than me, their voice may be husky already, and still they're inside, they're, there's a mess, so to say. In all kindness, I, I don't mean to put down the young people either. But all this development is also affected by illnesses. Nutrition and stress and if I think about the crowd you represent today, all of these are very big issues and may also lead to the fact that the conflict in development is actually greatest right at the time when these young people should leave pediatric care. Recent decades have also taught us why this is so, and it's all due to brain development. The last bits of the human brain to finally develop are the in the frontal lobe. And that's where we finally learn how to really plan for the future, how to solve many. Significant problems, how to control our emotions and our behavior. The emotional centers develop way earlier, and that's why young people already have. A car, so to say, that has a really, really nice transmission but no brakes. The brakes developed later. So when you meet young people. Uh, in, in your practice. Think about the perspective. The young person that you see that is noncompliant, defiant, taking a lot of risks that you do not understand at all, why are they doing that thing to themselves and seem completely invulnerable. are actually on the same time very insecure wondering whether I will ever be loved by someone, whether I will find a profession where I could work and be helpful to others. They're inexperienced. They really don't know what all those risk taking behaviors might lead to and how it might affect themselves. They might be frightened and very often anxious. So, moving on to the life circumstances, the great things that are going on. As I already mentioned a little bit, uh, young people also need to change from education to higher education to work life, and this, these transitions also often happen at the same time as the transition in health care. Uh, they are moving out of their childhood home. They're finding their first little apartment where to live, maybe with some other young people, maybe alone. They're learning to take care of all of the things that, that involves washing their clothes, buying groceries, getting their budget to actually match what their spending is. They're falling in love for the first time. That's a huge thing, and that's why, as we'll later hear, it's very important that professionals are also able to talk about these things and sex. Ah, medical follow-up can in certain respects resemble the relationship that young people have with their parents. And as they struggle for greater autonomy, they want to leave these restrictive relationships behind. And that is one reason why they may sometimes seem to rebel also against medical care. They may also have very high flying dreams that you may want to. Or you feel compelled to say like, no, you can't do that. Please don't say that ever to anyone. Please be one of the people who tries to see how that dream could perhaps be made possible. It, it will benefit you in the long run. Because all adolescents are first and foremost young people, they are not diabetics. They are not Hirschprung's disease. They are a person who has Hirschprung's, but they are a lot more than just the disease. In many studies, both our own and from other centers, quality of life has always been better when judged by the young person themselves than when judged by their parents or the carers. However, it is important to hear the worries that parents have and to also respond to them, because then the parents can again carry the young person forward and be more supportive for them. And then the system approach. Transfer is a simple moving on of paper. Sending a person out into the world and saying bye and that's not enough when you've had a. Relationship, be it a professional relationship with a person, you have to prepare them for the time when it, when you actually let them go, and you have to have someone on the other side saying welcome. I will be the one where we continue together on this path. And these have been discussed in extent for the last 30 years. But still, transition rarely happens the way it should. That's why we review it again and again. We need to meet patients alone. The recommended age tends to be from the age of 12, at least for a little bit of the appointment that they have. We should give the treatment advice directly to the patient, even if the parent is in the room, even if the mother is a tiger mother who seems a bit overwhelming sometimes, we turn toward the young person and speak to them and let the mother just listen. I'm saying mother because often it is the mother. Then we take a separate moment, we perhaps even let the young person out of the room to hear what the mom is concerned about. It's not always good for the young person to be there to hear these parental worries, because then they might just take them to themselves and, and sort of forget to grow. We discussed leaving the pediatric hospital as a positive thing, just like graduating from school. This is a natural thing that happens. Pediatric hospitals are not for grown-ups. You're going to grow up, and that's what we all hope for. That you become independent and that's why we also support the self-management skills that these young people are developing. There is growing evidence that single days of coaching for a transition have very low or if any impact. The actual transfer of care should happen flexibly and take into account the life circumstances and developmental stage and so on. Um, there's growing evidence that if you can manage a joint consultation with the pediatric and the adult side both present, even if it's a teams meeting from one party, that also builds trust in the young person and and may lead to better outcomes. If there are great discrepancies in treatment plans, these should be more built into a more uniform approach. This has been a A bit of a struggle in um. Liver and kidney transplant patients in Finland, so that's one reason why I raised this topic again. And finally, in adult healthcare during the first couple of years. It's a very, very high recommendation that consultations are more frequent and a little bit longer time is allocated per consultation than for other adult patients. Because trust takes time, it's, it doesn't happen the first time you see a person that, OK, fine, I trust you. You seem like a good person. No, it doesn't work that way. Young people also need one named person or contact if they have questions afterwards or between consultations that they know I can always call this person. Most times they don't, so you don't have to be afraid of a terrible workload if you give out a number. It's just again a sense of security that I know I'm taking care of. And you should be able to talk about all kinds of things. Tattoos Sex. Sleep Trouble at school because you can't find the toilet quick enough, whatever. Talk about it. Raise the issues, show that you are the person who won't blush. Whatever they think is relevant to them. Um, From the perspective of general practice. Continuity of care is the key. There's very strong evidence that you have to take care of the management continuity, meaning also that the process of transition cannot be on the shoulders of one single person. It has to be a holistic approach in the whole hospital so that when that person retires or falls ill, transition doesn't stop there, it continues. It's a full practice at your center. Information continuity and then the relationships, they all lead to better outcomes. You just have to take it or then go and read those studies. Moving on to education. That's what we are here for, aren't we? Uh I like this Picture because it depicts the full life cycle of a person, but. First, we realized that pediatrics need to be there. Children need something special from grown-ups, and then someone came up with the idea that actually neonates need even more special things than other children and. About at the same time in adult healthcare, they realize that geriatrics needs to happen. And I'm not saying we need a special field called adolescent medicine, but I do say that we need special competence to meet these young people and Treat them the way they need to be treated. Um WHO has mapped how much adolescent medicine training is available in Europe and. Many of much of Europe is gray. People didn't respond to this question, and to me that implies that training is not happening, because if you had it, of course you'd raise your hand and say, of course, we've got it. So still work to be done in that field. Youth friendly healthcare means that it needs to be acceptable to youth. It needs to be accessible to youth. It can't be just one hospital far, far away, and a 16 year old without a driver's license can't get there. And it needs to be affordable. Well, in Europe, oftentimes it is, we luckily have good public health care. The professionals working with young people need to show one attitude above everything else, and that's respect. Adolescents who are trying to grow their own wings and fly are very good at sensing whether you respect them or not. And finally, resources. As I already mentioned, this really takes a team. It takes a village to raise a child. Well, it definitely takes a whole hospital to manage transition properly. You want to have some kind of transition coordinator, especially if the child the children's hospital is far away from the adult hospital. Someone needs to be working between those two centers. Um, oftentimes you do need a social worker because of the support system, how it changes with age. But you also need companions in primary healthcare because no matter what kind of disease or illness or condition you have, you will also have normal little problem, health problems now and then, and if the GP understands something about the chronic condition, they will be much better able to also manage the small problems that exist. So that was calmer. I hope that acronym stays in your mind now after this presentation. And I also hope that you take with you Winston Churchill's words. Because success is never final, there will always be new young people growing that, and you need to start again. Failure is usually not fatal. You can say, I'm sorry, I didn't maybe. Show enough respect when I said that what I said, can we do that again? It's the courage to continue that counts. Thank you. As you have just heard, there are several aspects that need to be considered in order to properly guide patients from pediatric to adult care. These aspects, in combination with a multidisciplinary approach, can lead to a successful transition for our patients.