Why structured transition from pediatric to adult care matters
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- [Brad] My name is Brad Miller, and I'm a pediatric endocrinologist from the University of Minnesota and the M Health Masonic Children's Hospital. Today, the title of the series is "Bridging GHD gaps: From complexity to continuity" by Medthority," and the title of today's topic is "Why structured transition from pediatric to adult care matters," and I'm joined by Mehul Dattani.
- [Mehul] Hi, Brad, nice to meet you.
- [Brad] So Professor Dattani, please let me know your institution, where you're from and what your practice is.
- So I'm a professor of pediatric endocrinology at Great Ormond Street Hospital in the Institute of Child Health in London, and my clinical practice covers clinics both at Great Ormond Street as well as University College London Hospital, so the practice at Great Ormond Street Hospital is in children below the age of 16 years, and the practice at UCLH is a transition clinic with patients anywhere between 13 years and 20 years.
- [Brad] Excellent, and I think the main focus of our conversation today is to dive into transition and really talk about the process of transition. To start with, why does this structured transition matter for young people with growth hormone deficiency entering adult care? And that includes children with hypopituitarism.
- [Mehul] I mean, I think the transition process is extremely important because it's well-known that young people tend to be lost to follow-up at this crucial time, there's a lot going on in their lives, and unfortunately, it's health that is often not prioritized as much as it should be. We know that adherence at the time of puberty can be a challenging issue, and we know that there is a very significant loss of follow-up in a number of other disorders, although the data for growth hormone deficiency aren't clear as yet, but up to 50% of patients are lost with some conditions such as diabetes or Turner syndrome, et cetera, so I think it's important to try and make sure that, at this stage, there is strict vigilance really of the young person's health, the family need to be on board and we need to understand the various things going on in their lives, which I'm sure we'll touch on as we talk, to ensure that they are moved safely from pediatrics to adult care.
- [Brad] How do the coexisting conditions, I mentioned hypopituitarism, but when we think of growth hormone deficiency isolated versus panhypopit, where does that grade of adherence or challenge increase?
- [Mehul] So I think with growth... I think growth hormone deficiency in isolation, the children usually want to grow, and once they're of a reasonable height, they then think, "Hang on, why am I doing this?" And then, they can often sometimes stop the medication. On the other hand, the hypopituitarism is extremely important, that the treatment is monitored very carefully because if, obviously, they are lost to follow-up and they don't take their medications, then they are at risk of becoming extremely ill, and so, I think it's extremely important to engage, you know, patients with both disorders, either isolated growth hormone deficiency or hypopituitarism, and ensure that the right assessments are made at transition and that the patients then move on at the right time to the right physicians in adult care.
- [Brad] One of the big challenges in our practice, the added layer, if you will, are children with septo-optic dysplasia with visual impairments and brain tumor survivors who may lack some challenges... Or lack some ability for independence, I just wanted to explore that with you in terms of what are the extra things in those populations that your system does to try and help improve success for them?
- [Mehul] So I think that is a very important area to cover, and we look after a large number of patients with septo-optic dysplasia and also hypopituitarism in isolation but with other learning difficulties and autism, and there is a very strong association between these conditions, so at transition, we're faced with the challenges of how do you try and achieve as much independence for these young people as you can, and yet keeping them safe and... With their treatments, essentially, so what we tend to do is try and time this over a number of years, the process begins at the age of around 13 years with us, and at Great Ormond Street Hospital, we look after children until the age of 16, maybe occasionally a little bit longer, but really by that stage we do need to transition to the adolescent service at UCLH, now, with that, they are often on multiple medications, they are visually impaired, a large proportion of them do have significant learning difficulties or autism, and so, it's really trying to individualize and personalize the approach to these children and young people, and one size is not gonna fit all, and we begin the process around about the age of 13 years, try and see if they can understand the condition, the need for the medication, try and see if you can try and get a reasonable amount of independence at that stage, some patients will actually do their own growth hormone injections, for instance, whereas others would be very reliant on their families, and I think one's gotta be sensitive to the dynamics within an individual family, 'cause these families are hard-pushed with a lot of things going on, the young people are often in quite a difficult place psychologically, and I think one needs to really take it very slowly, so we also try and move them to the adolescent clinic at UCLH where the clinical nurses there have the same experience as at Great Ormond Street, but obviously with older young people, and their role is extremely important in the whole process, in fact, my clinical nurse specialists know the young people and the families very well, both at GOSH, and then, when they move to UCLH. We often need to have a best interest meeting in the UK, I don't know whether you have a similar approach in the US, but it's... And that is really challenging because even a blood test in a young person over a certain age is gonna need to have a best interest meeting to make sure that you are doing it in the child's best... Or young person's best interest, so that is really a huge challenge for us and for the families, and it's difficult for the families because they now have to, you know, go through a number of legal processes for the... With these children, if they... The children can't care for themselves.
- [Brad] That is different in the States, it comes about closer to when they reach 18, so that's a interesting dynamic difference, and you've described a number of the principles of an amazing transition program that that you have there, and what I'd like to ask you is how does that structured transition protocol differ from informal transfer of care? You know, do you have some patients that are more on the informal side, or does everybody follow your program?
- [Mehul] So with isolated growth hormone deficiency the process can be a little bit simpler, and what we tend to do is retest most of these young people once they have finished their growth, and this will be once they have been moved to the adolescent center, because there, we do an insulin tolerance test, which we don't do at Great Ormond Street, for instance, so there are practical reasons why we need to transition them for the tests, and once they are there, then obviously, if they're still growth hormone deficient, we will recommence growth hormone after discussion with the young person, occasionally, they do want a period off the growth hormone treatment to see how they feel, and I think that that is absolutely acceptable provided that you keep a close eye on them with regular monitoring of the blood tests and the bone mineral density, and that they're fully aware of the pros and cons of treatment. If they then decide to go on growth hormone treatment, then you continue, and then, after the age of 18 years, I will transfer them directly to my adult endocrinology colleagues, and there's a range of them, so I just decide who would be the best for this young person. On the other hand, if a young person has hypopituitarism, then I follow the more structured transition pathway, and around about the age of 17, I will start seeing them with my adult endocrinology colleague, and there's one particular person who has an interest in hypopituitarism, and we do the clinics together, so we have around six clinics a year where we see these complex patients, and we'll see them either once if it's a relatively straightforward transition to adult services, but occasionally, the patients want a bit more time to get to know the adult services, so there are some that are transitioned, say, at the age of 20 years, 21 years and we'll see them together for a bit until everybody's happy and comfortable.
- [Brad] Yeah, I contrast this to our program, which we're accused, as pediatricians, of holding onto them forever and not wanting to let them go, and 18 is our typical time when we're discussing the transition with our patients, and the adult colleagues would actually prefer not to start seeing them until 21 in many circumstances, but we do have a regular transition meeting where we have conversations with the adult endocrinologist, but we're physically not located close to each other and insurance doesn't pay for us to both see them on the same day, so it kinda limits our transition possibilities, so we've worked a lot on trying to do it virtually and things of that nature, but I think these cores that you guys are doing really tell us how we should be trying to improve that process for our patients, whether it's GHD, panhypopit, or as you mentioned, type 1 diabetes and other chronic illnesses. So how does local implementation vary? You obviously have an amazing program at GOSH and UCL, what about other places in your country as well as across Europe?
- [Mehul] I think it's variable and there are some centers that will transition directly, I mean, simply because of the logistics as you've just said, but increasingly, there are a number of centers that actually link up with the adult services and either discuss the patients or... Virtually or whatever modality they have, or they will have joined clinics, as I've said, with us, but, you know, resources are tied everywhere, the adult endocrinologists are quite pushed, so it does vary hugely, and certainly within the UK, there's some centers that find it challenging to do this, and not all of my colleagues also have the facility to do the joint clinics with adult endocrinologists, so I'm fortunate because I have a contract at UCLH and it all works much better, but some of the others don't do that and they will transition directly, so even within one center, it can vary a little bit.
- [Brad] Okay, excellent. Back to the patients, how do you figure out for them when they're ready to make these transitions? And I know you mentioned your nursing team that works with them, you know, what are the processes that you use to get them ready for those different stages or assess their readiness for those transitions?
- [Mehul] So I think we know the families very well, we start the discussions very early on, and the assessment is a joint one. So clinical nurse specialists often sit in clinics with me with these complicated patients, and we start discussing with the families as to when they feel that they would be ready, and of course, the answer is often, "Never," so we have to get over that stumbling block and explain the whole process to them, so the whole process starts at around the age of 13, but very few are transitioned before 15, 16, and then, you know, the nurses will assess their readiness, if you like, in terms of understanding, in terms of likely independence, and a lot of young people will say to you that, "Actually, yes, we would like to move to an adolescent center where we don't have to sit in the waiting room with, you know, young people..." "Very young children" so yeah, and... You know, and I think at UCLH, they do see that it's a different environment. When we first started the process, I think a lot of the families were extremely anxious about the whole process, and we have a support group for septo-optic dysplasia and transition would often be the, you know, topic that was possibly the most controversial, and a lot of families would get very upset and angry about the process, over the years, they've realized that there is a structured process, that we do have an adult endocrinologist who's interested in the condition and is developing the appropriate expertise, and so, now, it's much smoother.
- [Brad] That's awesome. How often does it not go well? And what do you do in those circumstances where somebody makes the transition and bounces back? Or is that not an event anymore?
- [Mehul] So it's not an event anymore because once they do transition, it is difficult for them to then step back into pediatric care simply because of the logistics, but I sometimes... I do stay a little bit involved, and that's why, as I said, my colleague in adult endocrinology and I see them maybe for a few more years until they're absolutely comfortable, now, we have had a few that have just been lost to follow-up thereafter or they're moved to their local centers, which is also understandable, we ensure that they're in the right place locally in those circumstances, but the majority will stay with us and settle down, I mean, they have to get used to the fact that they are seen less frequently in the adult services than they will be seen in the pediatric services, so in the UK, that's very much a phenomenon.
- [Brad] Yeah, the other thing that I hear from our patients is that there's less handholding in the adult services, if you forget to get your prescription or make your appointment, there aren't people chasing you down as much in the adult world as there are in pediatric world, and some of the patients really need that support, so those are really challenges that we have to navigate. So from a patient perspective, I just wanna focus in the last minute or so on why is that smooth and well-coordinated handover important for maintaining the continuity at the point of transfer? What do you see in terms of, and you highlighted it at the beginning of our conversation, of the outcomes if it's not done well?
- [Mehul] I mean, I think the transition process is critical because it's a time when we reassess the endocrinology, now, the adult endocrinologist will put me through my paces and say, "Well, how did you make that diagnosis of cortisol deficiency?" So it's a time when we go back and look over the records, and say, "Well, actually, these were the data," and sometimes, they will say, "Well, maybe we should retest them," and often, they retest them, and often, the hormone secretion is fine at that point, say, cortisol, growth hormone, usually, they are significantly deficient because of the sort of cohort we have, but the other hormones, they may be able to come off them, so I think it's a very, very important part of the process, that the two of you sit together, analyze this in detail, and then, work out the best way forward, I often switch a lot of my patients once they've finished going, for instance, to prednisolone instead of hydrocortisone, which gives them more autonomy, essentially, so again, transition is a time when you critically look at all that and make sure that they are on the right medication and the right preparation, and then, make sure that they're established under the care of the adult endocrinologists and not lost to follow-up, and I think that is the critical part of it.
- [Brad] Perfect. Well, thank you very much for your insights and look forward to more conversations.
- [Mehul] Thank you, Brad.
