Practical transition protocols and models of care
- [Brad] My name is Brad Miller, and I'm a pediatric endocrinologist from the University of Minnesota and M Health Masonic Children's Hospital in Minneapolis, Minnesota. The podcast series title is "Bridging GHD gaps: From complexity to continuity". The episode is "Practical transition protocols and models of care." And I'm joined by Mehul Dattani from Great Ormond Street. So Mehul, please introduce yourself.
- [Mehul] Hi, I'm Mehul Dattani. I'm a professor of pediatric and adolescent endocrinology based between Great Ormond Street Children's Hospital and the Institute of Child Health in London. And my pediatric practice is at Great Ormond Street Children's Hospital, whereas my adult adolescent practice is at University College London Hospitals. So at University College London Hospitals, we look after young people who are in the process of transition to adult care. And so there's a two-stage transition process from Great Ormond Street to UCLH and then to adult care over there.
- [Brad] Excellent. You know, so today we're gonna be talking about transition and how transition protocols can really impact that process. So how do you define your transition protocol and how does that practically affect the transition process? And we'll talk a little bit about how it differs in different places, but how did you guys develop yours and what are the key components of it?
- [Mehul] So the way we've developed our transition protocol is, at Great Ormond Street Hospital, we're supposed to start talking about transition and document that from the age of 12 to 13 years. And there's some key questions at that stage about capacity and readiness, et cetera. And then we are reviewing that every six months thereafter. So my personal practice is a two-stage transition, as I've said. So first stage is from pediatrics to adolescence, and then the second stage to adult care when I often see the patients jointly in specific transition clinics with my adult endocrinology colleague. Now, through the whole process, this is a multidisciplinary process essentially. So our clinical nurse specialists work very closely with us. They know the families even better than I do, and they will listen to the concerns of the families, and they will then gauge the right time for transition to University College London Hospital, for instance. And when I'm there, we have an adolescent clinical nurse specialist team who also get to know the patients very well. And in fact, before the patients are transitioned to UCLH, both sets of nurses have joint meetings about each patient that is being transitioned.
- Excellent.
- So there's a good handover.
- [Brad] No, that's excellent. How is that tracked in the electronic medical record? Do you have a transition pathway in your system to say we've met this milestone and beyond?
- [Mehul] Yeah, so we are working on that at the moment. So that's already started, but we're just refining it a little bit. But yes, so we do have that, which clinical nurse specialists usually do. They're amazing.
- [Brad] So as you're seeing the patient, you can see that those components have been already addressed as part of your evaluation and you can bring that up with the families at the different points to say, here's where we are, here are the things that we're concerned about. How does that change your care of the patients as they get older? We talked a little bit about patients giving their own injections, patients becoming more independent. Are those things that you're stressing as the child is getting closer to transition?
- [Mehul] Oh, yes. I mean, I think we try and encourage as much autonomy as possible from the ages about 14, 15 years. So, you know, I would expect them to know a little bit about their medications, about their conditions. So they often have sessions with our clinical nurse specialist where they can go over the condition itself and ask relevant questions. The parents obviously know about the condition pretty well and they will also then talk to the young people. We give them all the literature that we have created for the patient so that they can go and read about it. They have open access, so we have Epic, and they can question us through Epic on any matters that they need to. And our nurses are brilliant. They will answer what they can, and then they'll come back to me if there any questions that they can't. So there's a dialogue that's very open. And really, once we have a degree of independence, and once we feel that they will be comfortable in the adolescent setting, then that is a time we feel that they should transition out to University College London Hospitals. And we will, you know, be sensitive about that and explain the pros and cons of the process. And most young people are quite ready by then and will appreciate really the difference in setting in the adolescent unit as compared to the pediatric unit.
- [Brad] One of the things that our patients also we talk about them with is scheduling their own appointments and having some of the meeting without their parents present. So is that a component of your system as well?
- [Mehul] So we start asking them if they want time on their own with us, but the parents are usually included in the consultations at the start. That's at Great Ormond Street. When we then move them to University College London Hospital, we start talking to the patient directly, and again, we'll offer them an opportunity to talk to us on their own. And my adult colleague will then explain to them that when they move to the adult endocrinology care, their parents will be excluded at the start of the consultation and brought in if the young person so desires. So they know that there will be that change as they move through the pathway really.
- [Brad] Yeah. So we've talked about some of the core elements that your team has in place, the education that you and the nurse specialists are doing, the readiness assessment, the documentation, the timelines. Are there any pieces that we're missing in that conversation of things that you think are key to the components of your transition?
- [Mehul] So I guess the confounder really is when a young person is under several different specialties at Great Ormond Street, for instance, and we do have a lot of complex young people with rare genetic conditions, et cetera. And then you have to be sensitive to the families because obviously if one component of the service is at University College London Hospital and the rest is all at GOSH, then that is difficult for the families. So I think that is one issue that sometimes holds back transition. And again, we will discuss it with the families and say, you know, "What do you feel?" And they will often say, "Can we just stay here for a little bit longer until we get more of the other parts sorted and transitioned as well?" So there is a little bit of flexibility in the system, and you usually have to then account to the managers and say, this is the reason why we're keeping this young person here, because we have the CQC, Care Quality Commission. And essentially they will come back to us and say, "Why are you holding onto young people too late?" So, you know, we are monitored very carefully, so we have to justify those actions. The other advantage, I guess, is that we have Epic at both sites, UCLH and at Great Ormond Street. So actually we can look at the notes across, although it's not as good as I'd like at the moment, but I think people are working on better communication really.
- [Brad] Excellent. So, we've talked about your model, and I know there are different models in different locations and the United States has a number of different models that depend upon the location and the resources as well. So when you talk about pediatric and adult joint clinics, shared care pathways, dedicated transition coordinators, what are things that other centers, if they can't find your system, should focus on to try and mimic or duplicate what you're doing?
- [Mehul] I mean, I think it obviously comes down to resource in the first instance and obviously time for particularly with the adult endocrinologist but also the pediatricians. Both have to make time to make sure that the process is smooth. And yes, it may be difficult if there is no sort of co-location of pediatric and adult services, and that is, you know, the case in many centers in the country, yet we have that issue as well. I mean, Great Ormond Street is a children's hospital, UCLH is about a mile away, which is not the end of the world, but you know, it is a little bit of away. So you have to make it work somehow. And I think these days with virtual sort of meetings, in fact that's what our CNS team do, the clinical nurse specialists. They will have virtual meetings with their counterparts at UCLH and ensure that all the patients are discussed appropriately. We've also now started to get together with the adult endocrinologists for a number of different conditions, such as CAH for example, and hypopituitarism is next on the list, where we have joint meetings and we bring their difficult patients, for instance, patients who are gonna be a real challenge to transition, to say, "Okay, how best can we help this family move across?" So there's also that avenue now that's opening up for us, but it needs effort and I think, you know, in the patient's interest, I think you just have to go that extra mile.
- [Brad] Yeah. Dedicated transition coordinators, it sounds like your system has a process in place where that may not be necessary because you have specific individuals with those duties. Our center has explored that as dedicated transition coordinators to work, just as you mentioned, particularly when the young individual has multiple different sub-specialists, a cardiologist, a endocrinologist, a nephrologist. We've also have explored that just for any child that is transitioning with a chronic condition, whether it's endocrine or cystic fibrosis or others. So how does that get incorporated at your center, if at all?
- [Mehul] So that is a bit of a challenge because we have to directly communicate with the different teams to find out when the patients are being transitioned. But again, I guess we don't have a formal transition coordinator, but our clinical nurse specialists act as transition coordinators. So as I've said, they will drive the process. They will discuss with the other clinical nurse specialists in the other team, say cardiology or respiratory, et cetera, and then work out what's happening, and then we can sort of come to some sort of decision. But the problem at the moment, it is that different teams will transition at different times, and it's really, that is a real challenge that we need to get on top of. The hospital now is very aware of that, and there is a whole move to sort of coordinate transition across specialty, so I think it will come.
- [Brad] Yeah. One of the things you mentioned earlier was the retesting of individuals as they get close to transition or after transition to make sure what endocrine needs they have. And that gets to the question of what are the key points that we as pediatric endocrinologists should be documenting and providing for our adolescent or adult endocrinology colleagues? So what are the pieces that we need to go back into our records and find and highlight for our partners in care?
- [Mehul] I think that's a very important question, and I think the answer to that must be that it's a lot of work, but you actually have to go back to the beginning and you have to go back to why that child was started on growth hormone, why that child was started on hydrocortisone and levothyroxine as well. And obviously puberty will be better documented because it is, you know, the time of transition anyway. But all of these other hormones you do need to go back and see because sometimes the evidence may not be as clear as to the need for the relevant medication. And you do need to look at the notes and try and understand why the clinician who started the medication at that point, that may not be you, did so in the first instance, okay? And so we go back with the data. And obviously Epic came in in 2019 just before COVID with us, so all the records before that are somewhere else. We can access them, but they're not perfect, and sometimes you just need to go through the lab records, which are there. So it is a lot of work, a high-level intensity, but it is so helpful because as I say, you know, I will be questioned by the adult endocrinologist who sits with me and said, "Okay, why did you make that decision?" "Are you sure that this person needs it at this particular time or should we retest?" And so if we have that information, we say, "Well, this is why we started it, okay?" And yes, there is a need for retest for some of the hormones, there's no doubt about it. And we have indeed found that the results have been normal in, you know, late adolescence, early adulthood.
- [Brad] No, I think that's key. The transition process that I've followed here in our system and my partners have as well is the term we like to use is wrap them up in a bow and have them ready when they're ready to transition. So essentially documenting what we've done, retesting if it's needed, and having them, particularly because not all of our adult centers have the capability of doing the dynamic testing that may be necessary. And so particularly if they're not at an academic center, that becomes a challenge. So the information that we include in that high-quality transfer, is that just part of your standard note or do you actually prepare a specific transition document that goes with the patient or is added to as the transition process grows?
- [Mehul] So what I do is then try and make sure that that last report when I see the patient for the last time at Great Ormond Street is very comprehensive and includes, you know, the original sort of diagnosis, the MRI for instance, the data on the biochemistry if I can find it from the very early on. Genetic data if I've got that as well. So everything will hopefully be in there and move to UCLH with the patient essentially.
- [Brad] When they make that transition, we've talked earlier about the challenges of transition in specific patient populations. What are some of the warning signs that you see in patients or characteristics of patients that are gonna be more difficult to transition?
- [Mehul] So first thing is I think once they've finished their growth, sometimes they'll say they will carry on with growth hormone treatment if they're severely deficient. But then you know that the prescriptions are not being asked for in a timely manner. So you realize that actually there's a problem there, okay? And I mean, my biggest worry I have to say is with things like hydrocortisone and thyroxine. Thyroxine is easy enough. You pick it up on the blood tests and you know that they're not taking it. And you can confront them and go through the reasons why they're not taking it and help them understand the need for it. Hydrocortisone is a little bit less obvious. And, you know, I have had people then going into crisis, et cetera, adrenal crisis and then they realize that actually they do need it. And that's why, I mean, I proactively, once they've finished their growth, discuss sort of prednisolone with them. There's also Efmody, which is becoming available. So we discuss these options with them and see if they would be preferred. But we engage with them the whole time, try and engage with them as much as we can.
- [Brad] In the last minute or so, I wanna just examine the ongoing feedback that you and your adult team have to improve your process. So what does that look like at your center in terms of meetings amongst the teams to say, how are we doing this? How can we do this better?
- [Mehul] So the adult endocrinologists and I obviously meet regularly, so we do discuss the transition. And are there any particular problems with any patients that have been raised? We haven't as yet got a formal feedback process for the patients, and that's what we are working on at the moment, and that's what we need to do really to try and improve the process. We also listen obviously to our clinical nurse specialists because they will have a very good idea of what's working and what isn't for specific patients. And you know, I do sometimes hear from some of my patients, say, "Well, this doesn't work well." And then I go back and say to the adult endocrinologist, well, they've expressed this concern, you know, that they haven't been seen in a timely manner or whatever. And I know you're busy, but you need to prioritize that. So I think sometimes you do do that, but the patients often have that relationship with you over several years and they feel comfortable to come back to you and say, actually can you help with this? So that does happen.
- [Brad] If you had advice for somebody trying to develop a program in their area, what would be the key steps that you would say to improve this process or set up a new process in the location that they're at?
- [Mehul] So if possible, dialogue with the adult endocrinologist at a very early stage really, and then you work out the process that fits both of you the best. And, you know, I really value the joint consultations because I learn a lot from the adult endocrinologist. They learn a lot from us if they don't know much about growth, et cetera. And they admit it. And obviously, I don't know about a lot of the things that they do. For instance, they will give prednisolone only once a day, and, you know, I balk at that and they say, no, it's fine. You don't need to worry about it. They're all fine. So you know, it's different processes and you need to understand each other. So that's the first step. And then the second thing is obviously bringing your team on board. And my team actually are much more advanced than me in thinking about transition. My nurses will come up and say, "What do you think? Ready now? We think they're ready." And then that is a hint saying, get on with it, you know. So I think all of those processes would be helpful. If they haven't got access to an adult endocrinologist locally, then obviously that is a little bit more challenging. But then they need to find someone, you know, within reasonable distance that they can communicate with electronically or, you know, virtually, however.
- [Brad] Sounds good.
- [Mehul] But those are the steps really that you would need to start off with.
- [Brad] Excellent. Well, I appreciate your time. This was a great conversation about how we can improve the transition process for our patients. So thank you very much.
- [Mehul] Thank you, Brad. It's a pleasure.
