Transition of care - The development of transition of care programs for colorectal patients

Ernica Transition of care videos, chapter 2. The development of transition of care programs for colorectal patients, experiences from three European centers. Anders Terhol, clinical research fellow and consultant pediatric surgeon, Oslo University Hospital and University of Oslo. First, some Norwegian geography and population data to set the scene. Norway is long, with 1750 kilometers from south to north. We have a population of 5.4 million people where 1.15 million is under 18. The Norwegian healthcare system. It's public and free. And there is no private providers of pediatric surgery. We have only 2 referral pediatric surgical centers in Norway, one in the capital city of Oslo and the other one in the middle of the country that's called Trondheim. Therefore, patients often have to travel long distances to these two centers. In Norway we see about 10 cases each of Hirschman's disease and rectal malformations yearly. 14 to 16 cases are treated in Oslo. And 4 to 6 cases in Trondheim yearly. Here is an outline of our transitional program for colorectal patients in Oslo. Patients are enrolled to our colorectal transition clinic from the age of 12. With coping courses offered between the age of 13 and 17. Referral to a pelvic floor center is considered when the patients reach 17. All adult patients are offered to attend a coping course. And I will now describe our transitional program in more detail. When do we start the transition process and which healthcare providers do the patients meet? When the patients are 12, they always meet a pediatric surgeon. And a stoma care nurse. A consultation with a psychiatrist and or a neurotherapist is offered when needed. We offered the teenagers to talk with us without their parents present. And we often inform the adolescents in advance. That we would like to talk to them alone. With the parents next time they show up at our place. Which topics are discussed during the colorectal transition clinic? We always try to keep the health information that we provide each adapted. We always look for ways to optimize bowel and urinary function and to find a solution that suits the individual adolescent the best. We have a special focus on coping strategies and self-efficacy in our consultations. Scars are discussed and we, we refer adolescents with ugly scars to our plastic surgeons. We discussed sexuality, and especially if the condition itself or the surgery could have affected their sexual life or their future fertility. And rectal manometry is offered to all adolescents. When the adolescents are turning 16 to 17, we start to prepare them for the transition. We prepare them for the different way of follow-up in pediatrics versus adult healthcare. And that they are as adults must take full responsibility for their own healthcare. And that they will need to be clear about their own needs. A medical summary of their congenital disease, treatment, follow-up, and where they should be referred as adults if they experience symptoms that could be related to their congenital condition. To the left, you see the invitation of our coping course that we arranged for adolescents. They are held as 3 hour meetings in the evening where we start off with a welcome session and pizza. And we have chosen to keep these courses diagnosis specific and boys and girls separate. We then move on to our Q&A session. About their congenital disease with both adolescents and parents present. We then run separate sessions for adolescents and parents. Participating healthcare professionals from our team is pediatric surgeons, psychiatrists, psychologists, and stoma care nurses. We have an attendance rate of 30% of invited adolescents to these coping courses, and the adolescents. Score the usefulness of the course as excellent. Most adolescents find meeting peers and sharing stories the most important of these forces. And interestingly, all the adolescents and parents. Recommend these courses for others. We refer our adolescents when they reach 18. And they still have bowel, urinary, sexual, and or psychological impairment. And if they still are in need of follow-up from adult healthcare providers. This is the pelvic, this is the hospital where the pelvic floor center is situated. And the pelvic talk center, we offer coping courses for adults. And here we run disease specific but gender mixed groups. The coping courses for adult colorectal patients are run as a 1-day course over 7 hours. And the adults meet several specialists in informational slash educational sessions of about 30 minutes. Only 17% of invited adults participate in these courses, and gender and travel distance did not seem to influence attendance. However, the attendees were older, median 37. And the non-attendees median 23. The adults, as the adolescents, score the usefulness of the score course excellent. Uh, and they highlighted the same things, the possibility to meet others and share their stories. Many adults meet others with the same congenital disease for the first time at these coping courses. All adults recommended the courses to be earlier, like we have started in the adolescence. Now over to the challenges we face in our colorectal transitional program. In our own department, it can be challenging to involve all pediatric surgeons to be interested in transitional care. And we would have liked to implement checklists. For transitional care. In order to create a system that is robust and is a non-person dependence. At the collaborating pelvic floor Center, there is still lack of knowledge about the colorectal diseases that these patients are born with. And the surgical treatments that they have received. Even though we have started the colorectal transitional program, there could still be a big difference between the pediatric and adult healthcare system these patients meet. Patients report that they are met with shorter consultations than they are used to, and expectations that they will come alone. And in general, a rougher tone and treatment they are not familiar with. So lastly, I would like to share some thoughts, some questions. Is lifelong follow-up necessary in colorectal patients? What should be the minimum of a transitional program and how should a transitional program be organized? Thank you so much. Irena Schocken van Lindskrooten, nurse practitioner, Sophia Children's Hospital, Erasmus Medical Center, the Netherlands. Thank you for the invitation. I am Irenajoker. A nurse practitioner, you. A lot of surgeons, but I'm a nurse practitioner, and I do the transition bo. I'm now working for 12 years on the surgery ward, and I'm specialized in anorectal malformation and Hispru disease. And for 3 years, I now run the transition program for the colorectal patients. We've seen in Oslo, here's the Netherlands, a small country, not as large, but a lot of inhabitants, and we have 7 university hospitals with 6 for children, and, uh, we have 45 patients with anorectal malformation each year in Holland and 45 with uh his disease and in the Erasmus MC Sophia Children's Hospital we have 15 of each. We have a colorectal team. It includes 2 surgeons, Tim Schlotz Konimmiosa, 1, play therapist, 2 stoma nurses, 1 psychologist, and me as a nurse practitioner. This is our timeline of the anorectal malformation patients and let you see the patient journey. Because of the time, I don't walk you through this, but you can see there are fixed time frames when the visits are scheduled. At the age of 12, we start thinking about transition. And at 18 they go over to the adult care. We have 3 time points when we see the patient in transition. That's at 1214, and 17 years old, and of course more if necessary. During a visit when I think it's very important to give a lot of information. And especially to the child. When they were born, we gave a lot of information to the parents about the disease, but to a teenager, we never gave information to the patient about his disease. I had a couple of of childs on the outpatient clinic who could not tell what kind of disease they had. Most and there are happy children without a lot of problems, but it happens that parents did not tell out of shame or taboo. They only told their child that they had a bowel disease. And if you don't know what kind of disease you have, you cannot recognize alarm symptoms. That is needed for self-management. You'll also have to work, uh, step by step toward independence, for example, to start, uh, doing a rectal washout yourself or thinking about taking your medication yourself. And if they have a good self-management, it can give confidence. But self-confidence must also come from accepting accepting your illness in your own body. If there are problems with this, and I see that at my clinic, uh, they can talk with the psychologist or the play therapist. In addition, I give more practical practical information about changing rides and insurance. That's changing when they are 18 and they have to prepare on that. Sorry, I have to talk about sex because it's uh Renee always thinks on my out uh on my uh outpatient clinic I always do that the whole day, but it's a little part of my job. But we know several researchers showed issues with sexual well-being in patients with anorectal malformation and morbisyndrome. In 2015, DC Ray van der Holmdel did a PhD in Rotterdam on anorectal malformation, and a part of her promotion was about pro-sexual well-being in adult patients. And she showed that there are a lot of patients with sexual problems. 60% of the patients say that they missed information about sexuality in relationship with the anorectal malformation or hairsprung disease in medical treatments. And that's why I always have the conversation with young people about sexuality during the visit with me. For to, for example, how to start a relationship, how to tell a partner about incontinency problems. And the possibility of having an erection for boys or a relaxing of the pelvic floor for the girls. We work together with gynecologists, urologists, and sexologists as needed. And for more information about this topic, we created a website with all universities, hospitals, and the and the patients association. It's now only in Dutch, but we are busy with translating that. Um Starting at 14, I always ask the parents to leave the room for part of the conversation, and I never leave this choice with the adolescent to avoid loyalty conflict. And now the patients can ask questions that they don't want to do with the parents in the room about sex or smoking or other things. 18 and then. I, I already told you that I that on a childcare we have a standard interval of hospital visits. While in adult care, the visits are more driven by disease activity. The patients need a lot of self-management when they transferred to the adult care. Pim Slots, one of our surgeons, is also on the adult side with the C clinic, and it's there for 10 times each year. Um, a specialized team with gastroenterologists, urologists, etc. are there to help if it's needed. But it's not yet well used, with an average of 30 patients a year. And then last but not least, don't forget the parents. The role of parents during the transition program is changing. For years they are an important part of the care. They were co-healthcare givers, and now their role is changing to supporting the adolescents. Let them be a part of the transition and include them step by step on this pathway. The Sophia Children's Hospital, we started a project to make a blueprint how to manage the transition. Because many patients with different diseases require the transition of care. It is useful to use each of each other's knowledge so that no one starts from scratch from scratch one. Therefore, we start a large project in the Sophia Children's Hospital with doctors and nurse practitioners from the child but also from the adult care. And experienced patients are involved in this project to give us feedback and to improve this. So in conclusion, work at knowledge and self-management. Work at confidence. Talk about sex, and don't forget the parents. And if you don't have, create a universal transition plan. Thank you for listening. Rebecca Pulvirenti, pediatric surgery trainee and PhD candidate, Padua University Hospital, Italy. OK, so good morning again. Um, so I'm gonna exactly talk to you about the transitional care in Padua and I'm gonna focus on the real challenges that we've been through to build up such a transitional program. Uh, also for me, a bit of geography and background. In Italy we have 8.6 million inhabitants aged between 0 and 16. We have a public healthcare system and no disease centralization. Given a closer look to the Veneto region, we have 134,000 inhabitants from 0 to 16 years and 4 pediatric surgery centers. Referring to Padua Hospital and to colorectal patients, for Hirprung disease we have around 7 to 8 patients a year, uh, that translates in around 40 patients that are currently on uh on follow-up. And referring to transition for these patients, we recently implemented our program based on a surveillance campaign that we performed within 30 patients, adult patients underwent surgery for Hirsprung disease. We've contacted them and based on their responses to questionnaires, we've implemented what's now our transitional program. And we also refer them to adult specialists. So with this new transitional program, we transitioned 3 patients. Looking at the end rectal malformations, uh, we have a similar number of patients per year, around 75 patients currently on follow-up, and around 8 patients underwent a standardized transition of care. So what about transition? This is just a timeline for overall healthy patients. So of course whatever patient might have an acute need would receive additional care, but as a standard, we have, uh, starting from 10 years of age, regular follow-up at our outpatient clinic, um, where we have an extensive course evaluation, both with physical but also with all uh symptoms and questions that patient may have. And then around 15 years of age, we introduced the concept of a transition of care. So we have a dedicated visit where we explain what's happening next, uh, what they need to expect, why a lifelong care is needed, and who they need to refer to in case of acute issues or just for regular follow up. And then when they turn 16, we refer both Hirsprung patients and anorectum malformation patients to an adult gastroenterologist. We as pediatric surgeons are present during the first visit and we provide the adult specialist with a summary of the patient clinical history. Besides this timeline for anorectal malformation patients at puberty, we tend to refer women to adult gynecologists. It's a dedicated figure that will also follow these patients into adulthood, and we also provide a summary of the clinical history and were present at the first visit. So yeah, what we've tried to do is to build a multidisciplinary team that foresees from the pediatric side a pediatric surgeon, a dietitian, and a pediatrician, while on the adult side we have a general surgeon, a gastroenterologist, and a gynecologist. And in between, uh, we have for those patients requiring bowel management, special bowel management, we have a specialist nurse taking care of them either inpatient or providing home consulting. Of course we know the program is still to be implemented and since a few years we've started thinking about who's missing and what we could do more. So that's why we made a pilot on sexuality addressed both to clinicians and patients. For clinicians, we had a two day seminary where they were provided with general information on adolescents' perception on sexuality, and the sex therapist provided some tips, tips and tricks on how to approach. Sexuality in this group of patients while on the other side for patients, uh, we evolved into this pilot patients older than 10 years of age and we offered both 1 to 1 sessions or group sessions divided by group age. And we really had great feedback from this, uh, from this pilot, so that's really something that we want to um establish uh within our transitional program. But let's talk about the challenges. So first of all, as you may have seen from the, from our geography, we have a lot of pediatric surgery centers in really restricted areas, and this has a lot of impact. Uh, first of all, in the continuity of follow-up, because, uh, it can happen that patients decide to, after surgery and initial follow-up, decide to move to a closer center, so you might lose some patients in follow-up or receive patients from other centers, and it also determines a small number of patients per year and per center. And this translates in a real challenge to create a standardized pathway for these patients if there's not a continuity big number of patients that needs transition every year. And of course it impacts the sustainability of a transitional clinic or at least a transition team. And then we have the lack of resources involving funding staff and time. So going through each of them, referring to funding, we have a public healthcare system which is definitely overloaded, especially on the on the adult side, and this means that patients without major needs or acute needs or that might need an active intervention are often discharged from follow up. And time is mostly safe for those patients that really require some active intervention. And um So this is one of the main, of the main of the main problems, and then we have a lack of staff and time that can basically walk together as a challenge to build a transitional program. So referring to staff, unfortunately we didn't have any dedicated figure among our um our staff as it can be a nurse practitioner or a nurse. Specialist to take care of these patients that take care of transition of care. Uh, we have a lot of trainees, but of course they lack of experience and also they can't um ensure a continuity of follow-up because of course they need to rotate between hospital, they can go abroad, so it's not as easy to um handle a transitional program for them. And uh also we don't have uh um colorectal specific fellowship uh uh formalized in our program, so it's really hard to um build uh yourself uh an experience uh that an adequate experience to then uh provide uh and uh handle a transition of care program. And of course we, of course we have our consultant, but they're also overloaded, especially on the, on, on the adult side, so it's hard to find time to follow these patients and referring to time, these patients, the transition of care is handled during a normal. Outpatient clinic, um, so we don't have extra dedicated time that these patients might surely need to address their questions, their needs, their doubts in an extensive way. So this is surely a limit to our transition of care program. Anyhow, we're always looking at the future and we now have within our hospital a functional department on rare diseases, and we're actively working with them. Uh, to implement these transitional programs and to reach 3 main objectives. So the first one is to clearly identify the transition of care program coordinator, so a figure that can really take care of this program, make it bigger, make it better, and, um, um, provide continuity. Um, Another objective is to want to raise patient awareness on the need for lifelong care. And the 3rd 1 is to avoid the discharge of healthy patients from follow-up after transition. Thank you There are challenges to be addressed in the field of transition, and having a multidisciplinary team is paramount in addressing these challenges. Some challenges may differ per country, and therefore the development and implementation of transitional programs may vary. It might be helpful to engage with National Health ministries or local government in the development of transition support units, and to promote a close collaboration between clinicians and patient organizations. Ernica can facilitate national and cross border collaborations with pediatric and adult care specialists, and can promote and implement best practice on transition of care.