Transition of care: Initial impressions from the Erasmus MC

The improvement of neonatal and perioperative care has resulted in an increased survival rate for patients with congenital anomalies and chronic conditions. As a result, the provision of support to pediatric patients in their transition to adult care has become a hot topic. With their transitional programs, the Erasmus MC in Rotterdam is actively working to better guide pediatric patients with congenital anomalies or chronic conditions into adulthood. Currently, Erasmus MC has several transitional programs in place and or in development. Several specialists from multiple disciplines are working together to address patient needs. Long-term follow-up of patients is an area of focus at Erasmus MC. Our dedicated transitional programs and specialist staff has resulted in the transition of 35% of our 17 year old patients from pediatric to adult oriented care. What do our clinicians, patients and parents think about this journey so far? Do you consider it important to build a transitional program for patients with congenital anomalies? Well, it's extremely important because there are huge differences between pediatric and adult healthcare. In the Children's Hospital, we have a holistic way, To see the patients, we look at family, school, how they do in sports, and if you go to the adult side, it's more focused on the disease. So those patients, they fall into the gap. If they are not prepared for that, so it's both for the patients and for the parents that it's very important to work on transition. We've been doing follow up for almost 25 years and we now transition patients into adult care, and we know that a lot of their problems continue on into adult life. So yes, I think it's very important and I think it's important because you can in a transitional phase you can. Train the children to fend for their own health and their own rights and their own power. Which is the main goal of transitional programs for patients with congenital anomalies? I think the main goal of the transitional program is to train the children to recognize the importance of their own health and to recognize the risks that they run and how they can minimize the risks and live a life. With as little interference from their congenital anomaly as possible, we say that when you are 18 you are an adult, but you know that 18-year-olds are often not really adults in their behavior and in their skills. So to prepare them for those difficult tasks to manage their own disease. That's a very important goal and another goal is to provide continuity of care. So to bridge those differences you have to have a system in place to provide continuity. So the pediatric and the adult healthcare providers have to have close contact. I think one of the main goals is to to not lose any patients in transition of care. We know we lose patients, but I hope with a good program and good information we don't lose any patients anymore, and I think with the program we make people more self-assured. Do you think patients or parents with congenital anomalies are aware of the need for a lifelong follow-up program? That is a problem because they need to know who to contact the adult team and when to contact the adult team. So this is a task for the pediatric team who say goodbye to the patients to explain that to them so everyone is aware. I think the patients with a lot of problems, they know why they need the transitional programs, but I also see patients with not a lot of problems, and sometimes they don't know what they have. So that's another kind of transition of care. But if you give the information and talk with them, I think they know why they need transition of care. And I think a lot of the parents are unaware that they need lifelong care. A lot of the children are unaware that they need lifelong care, but I think the the one of the powerful things about follow-up care is that you have a lot of years to teach both parents and children that their health is also their responsibility and they need lifelong care. You recently experienced the transition from pediatric to adult care, do you think it is important to have dedicated healthcare professionals to guide patients through this process? Uh yeah, I want to stop Samarses or to stop, um, yeah, yeah. And. Uh, and if you over as well and um. Dung is. Minor minor ounces of it on their heads hand that males are to hell for s coming under the bell. What did you appreciate most about this process? Daughter Alech was over who's Philippe she don't need uh osra and process from tunic moment like the overs. and it's for my family. That is work in Benin and it's my uh. O. Is there something you missed in the transitional care process? Yeah, this is, uh, yeah, but it's about and What, what kind of doctors do? Uh, all the, all the arts and miss, yeah. is my team and my team sara. In your opinion, which is the main goal of transition of care programs. Uh stone hypocrites for our boat over practicesak the that uh the kleo met physique of it. And was it the Bella or doctors. 4. and also. Do you think it's important for your child to have a defined pathway leading him or her from pediatric to adult care? and in Sophia and. To how to stop and that's over. So that's Hill and ski overstop. And trout er in stoned. In your opinion, which is the main goal of transition of care programs, and which is the main benefit? Yeah, it does it all blonreichste is um the art opeinleinzets the drach and okorausreer fante so the hill dlu is we can yekint all have dormacht in a patriact and barnachtuchha. So the st factor for needs an art set in of dinger needs snobs belongs is dot dot bla lime factors and dotsits. 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Yeah, and as latte, um, heppe menos reliss rufel zor are oak and it's kinzika was for the outer this um uh ehel stone uh the heel el trams and dinga mum. Um, and all the feedback that's what leomovech and dots and dinged on the net be dottier strachsnitmerjain and vi an arts not to look okne overna it is von Echtenkurviri who kin or arter and uh ye kins benara and. As head of the department of pediatric surgery, why do you think it's important to promote the development of transition of care programs? Based on our own experience in my own center, but also in the answers we're receiving from patients and also from patient support groups, I think it's extremely important to implement transitional care. A proper transition can reduce comorbidities also in adulthood, and that's important for these children and also the parents that they can let their children. Go to the adulthood. And what role can Ernica have in this process? Of course it will be different in every country because we have a different health system. But we have to make a basis for all the patients in Europe that they can have a transition to adult care. As we're talking about rare diseases, Ernica can play a role in establishing standardized transitional programs by pulling together different countries' expertise and resources. Within Ernica, we have several patient representatives and clinicians all over Europe that can help define common strategies to better guide patients into adulthood. The preliminary impression is that transitional programs are gaining an ever increasing role within the patient's journey. These programs can be considered a key instrument to ensure a multidisciplinary approach in the continuity of care. Here at Erasmus MC we will direct our efforts and resources towards lifelong follow-up programs, matching the patient's needs.