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Transcript: The importance of early referral and multidisciplinary care
Lars Sävendahl, MD, PhD, Bradley S. Miller, MD, PhD
All transcripts are created from interview footage and directly reflect the content of the interview at the time. The content is that of the speaker and is not adjusted by Medthority.
- [Brad] Hi, my name is Brad Miller, and I'm a Pediatric Endocrinologist from the University of Minnesota Medical School and the M Health Fairview Masonic Children's Hospital. We'll be talking today about "Bridging GHD gaps: From complexity to continuity". This is a Medthority sponsored podcast. The title today is "The importance of early referral in multidisciplinary care". Joining me today is Lars Savendahl.
- [Lars] Hi, thank you very much, Dr. Miller, for introducing. I'm Lars Savendahl. I'm a Professor of Pediatric Endocrinology at Karolinska Institute in Stockholm, Sweden. I'm also Senior Physician at the Astrid Lindgren Children's Hospital and Karolinska University Hospital in Stockholm. It's a pleasure to record this today with you, Dr. Miller.
- [Brad] Excellent, so what I'd like to start with is why is early identification and timely referral important in the management of children with growth hormone deficiency?
- [Lars] Well, first of all, early diagnosis is much easier than having a patient approaching puberty. The diagnosis tests have much better specificity at a young age. It is a great advantage to be able to start treatment early as we know that the long-term growth outcome is significantly better the earlier you start. So from a life perspective, you do need more growth hormone milligram than if you start later, but the growth outcome is better.
- [Brad] Excellent. What are some of the challenges in getting to see the kids earlier for us as pediatric endocrinologists, and how can we fix that?
- [Lars] It's difficult. I mean, it might be parental delay, it might be delay in the primary care physician or pediatrician as sometimes there are financial issues, for example, in United States, less in many European countries. And I think it's very important to have podcasts like this and other kind of information directed to HCPs and also to the general public discussing the importance of early referral when child has growth problems,
- [Brad] What are some of the early signs that somebody might have growth hormone deficiency, particularly in infancy or even as young children, toddlers?
- [Lars] Well, in the newborn, of course, we always look for hypoglycemia, developmental problems, otherwise during childhood and infancy, early growth failure. But it's important to note that during first year life, it's very difficult to diagnose a growth hormone deficiency based on growth failure. That usually will not present until the second year of life.
- [Brad] So what are the things that the pediatrician should be watching for as they're trying to pick up children who require a referral to the endocrinologist?
- [Lars] Always analyze and look at the growth chart carefully and look at the weight and high development together. And if you lose significantly more in height than weight, this, of course, suggests an endocrine problem, and it could be a growth hormone deficiency.
- [Brad] I live in Minnesota, which I call the land of tall people, and I know Sweden is similar. How much does the role of the family's height play in your evaluation and where the child is compared to that?
- [Lars] Of course, it plays very important role and we always calculate mid parental target height. And as you know, most children they grow within +/- 1 SD from their mid parental target height. And if the current height is significantly deviant from the family height and that could be a sign of, for example, a growth hormone deficiency.
- [Brad] Is there an age at which that becomes really helpful? I know and as you said in the infants, it's a little harder to gauge where they should be, is that more second or third year of life where you feel like- - Yeah, yeah. - Mid parental- - Second, third life, that's usually when you see these children present. However, if there is, for example, an underlying syndrome, I worked a lot with Turner syndrome during my fellowship in North Carolina and we looked at the growth pattern of children with Turner syndrome and they usually lose between first and second year of life, so syndromatic short statue often present earlier, second year of life.
- [Brad] And I think it's really important as we talk about trying to identify children with growth hormone deficiency that we may identify other conditions that are not growth hormone deficiency. - Correct. - And have to separate them. So yeah. - Yeah.
- [Brad] So what roles do the primary care physicians play in that early stages of growth hormone deficiency evaluation? What are the things that you should think they should be doing to evaluate children early?
- [Lars] First of all, exclude other causes of short stature. Everything from psychological problems, family problems to other chronic disorders, which is, of course, much more common than growth hormone deficiency. So here in Sweden, we have in the clinical guidelines how to evaluate children with short stature in primary care. So I think, and there are also several both national and international guidelines and it's very good to adhere to these.
- [Brad] One of the challenges we have in evaluating whether a child has a chronic problem is knowing which tests to get. And I know there have been literature saying cost-effective approaches are really important as well. So what are things that you recommend that people do besides a good history and a good physical examination and looking at the growth chart?
- [Lars] Of course, a basic laboratory workup, hopefully the primary physician has already made it, right? And that includes, of course, looking at other hormones like thyroid hormone. Thyroid hormone deficiency is very important to exclude. We always look at IGF-1, IGFBP-3, and also a quite wide battery of other basic labs. I think it's good to have an algorithm or guideline to follow when you work up a child with short stature. Several have been published recently. There is a very recent paper published in European Journal of Endocrinology by Andrew Dauber presenting an algorithm for how to work out a child with short stature and more specifically how to use genetic testing in a wise way in a child presenting with short stature. It's important to note not all children should undergo genetic testing. You need to be quite selective there because there are both pro and cons with genetic testing. - Absolutely. - But I highly recommend this paper by Dr. Andrew Dauber, an international consortium, international guidelines in European Journal of Endocrinology published earlier this year.
- [Brad] I think it is really important, and one of the things that they highlight in that paper was that there are genetic forms of growth hormone deficiency, but there are also many different genes that regulate our growth that have nothing to do with the growth hormone and IGF-1 pathway, and some that we would expect affect the growth plate and others that we wouldn't understand before we knew that they were involved in growth, that they could impact it, so a very important paper. - Indeed.
- [Brad] One of the keys I thought in that paper was they also talk about the developmental issues that you mentioned earlier as being an important part of deciding whether or not a child would warrant genetic testing.
- [Lars] And then, of course, dysmorphic features, microcephaly, macrocephaly, for example, of other signs that could warrant genetic workup.
- [Brad] Are there particular physical differences aside you mentioned the hypoglycemia is a symptomatic one that picks up growth hormone deficiency. Are there physical changes that you would say are more common in a child with growth hormone deficiency?
- [Lars] Yeah, in the newborn, a micropenis is we always look for in the males that could suggest growth hormone deficiency. And of course there could be signs of other pituitary hormone deficiencies also that can present together with growth hormone deficiency in the newborn.
- [Brad] Yeah, I think of midline defects as something that we some watch for as well in those children. The children with optic nerve abnormalities are ones that we keep a track of as well. - Yeah. - With concerns either early on or developing over time.
- [Lars] Yeah, yeah. But not all of the children with septic optic dysplasia have growth hormone deficiency, a subgroup there.
- [Brad] Definitely agree. No, I think that's a key important, like these are risk factors but don't make the diagnosis for us. So looking forward, once you have the patients identified with growth hormone deficiency, what's your team look like in terms of caring for children with growth hormone deficiency and what are the different roles of the people on the team?
- [Lars] We have a team, our peds endo clinic, we have pediatric endocrine nurses and doctors. We also have geneticists, we have dieticians, we have psychologists. And depending on the family situation, we engage more or less of these team members. Every child, every family regularly meets the nurse in separate nurses clinics. And generally, every other clinic visit here in Stockholm is a nurses visit and every other a doctor's visit, and thereby we can see the patients more frequently. I know that in the United States, where I also practiced before, patients more frequently see the doctor. In many places in Europe, this is alternating between nurses and doctors. And I think personally that's a very efficient way. Nurses often have more time and can bring up issues that maybe sometimes the doctor for time reason cannot discuss.
- [Brad] No, I think it's you highlight differences in the system> Here in the states, I partner with a nurse practitioner that we alternate visits with the patients, but she also cares for a number of patients independently as well. So it's a good team, but we also include our endocrine nurses in the mix as well. Do you have a pharmacist that is part of team as a regular component?
- [Lars] We have a pharmacist who is linked or associated with our team and that we on demand can consult, but the pharmacist is not involved in every patient.
- [Brad] And that's similar for us as well. - Yeah, yeah.
- [Brad] When you think about the differences that people bring to the team, you mentioned the endocrine nurses, what are the special areas that you ask them to be involved with?
- [Lars] I mean, the more looking into the social parts, half of the families do not live together, the parents, and they alternate between often one week at father's, one week at mother's home, and there are challenges there and which is linked to the adherence of treatment. And of course, the new possibility of using long-acting growth hormone with an injection once a week could be an advantage to such families where it works a little bit better with one parent than the other.
- [Brad] For sure, I think that's something that we're all exploring now and learning more about is how much will that impact adherence or compliance and what are the unique circumstances where it may be beneficial? And you talked about multidisciplinary involvement and mentioned the psychologist. How much does that individual, either a social worker or counselor, psychologist play in your system?
- [Lars] The psychologist should play a stronger role here. As I mentioned, I did my fellowship in North Carolina in the '90s and there, we had a psychologist, Brian Stabler, who saw every patient with short stature first visit and before a decision-making on starting growth hormone treatment. And I think that was very wise because many, many times it's not an issue about growth hormone, it's psychological issues behind the patient and the family can be as much help by such psychological support rather than growth hormone. Unfortunately, we don't really have the same resources here.
- [Brad] Yeah, it's interesting. We don't have those resources as available as we would like them either. And I don't think they're as much a part of a team as we would like them to be. So how does coordinated multidisciplinary care support effective long-term management during the pediatric years? And so how do we communicate amongst ourselves to make sure that we're keeping patients on treatment and helping them stay on it longer?
- [Lars] I think it differs between teams, but we have a systematic way of communication between team members to facilitate adherence, and we monitor adherence at every clinical visit and we recorded also in the hospital records, so I think this needs to be worked on. We all know that adherence will decrease over time if we are not very, very persistent emphasizing the importance of adherence.
- [Brad] What are the ways you track adherence? In our clinic, we ask the patients and they always tell us they're taking their medicine, so what ways do you- - I agree. - Find to be effective?
- [Lars] I believe they are quite honest. And I always ask that in every clinic visit. There, of course, we are have other ways, looking at growth IGF to see if they're not telling the truth and we can also see whether they do not ask for refill of prescriptions, so you can count backwards, so I think that there are ways to look through this.
- [Brad] Yeah, I think the pharmacy has been a helpful component for us as well. - Yeah, yeah. - And I'm hoping that as we move forward with technology, that that'll be more seamless in terms of being able to identify people who are struggling with compliance, and it's usually, as you said, it's not intentional, it's the multiple other barriers that get in the way, but figuring those out are really key.
- [Lars] Yeah, and of course, electronic devices could potentially facilitate adherence.
- [Brad] I think there are some digital technologies moving forward that may help, so I think that's an exciting area. The last topic we wanted to talk about today is the transitioning and how do we prepare our patients for that transition to adulthood. Some of our patients will need growth hormone long-term, and what does that look like in your system?
- [Lars] First of all, we prepare the families that growth hormone treatment is always reevaluated every year and will be reevaluated before when growth is finished and before any transition. We also ask the patients too as early as possible to take responsibility for injections themselves to prepare for transition and adult life later on. I personally try to always be with the adult endocrinologist in the first transition clinic. I think it's very good to have a formalized transition clinic, but this is problematic transition, and we know that adherence may decrease after being trans transitioned to adult medicine.
- [Brad] Are there things that you found to be effective aside from visiting with them together, other things that have helped that transition?
- [Lars] Not as I can remember right now. Maybe you, Dr. Miller, have any hints there?
- [Brad] No, yeah, I was going to share on my end, we do meet with the endocrinologist that they're going to be partnering with and, as you said, try and get the family to meet with them early in the process so that they knew who they're going to be transitioning to. We also start having the patient take responsibility not only for their injections, but for reporting their own healthcare, for making their appointments, et cetera, to get that to be more of their responsibility and ownership, if you will. So, but it's still a challenge, we have many of our patients go off to adulthood and then suddenly come back to us saying we didn't find the right fit, and so that can be a challenge
- [Lars] For here at Karolinska, an advantage we are just 50 meters from each other, adult and pediatric endocrinologists, so many of our patients steps by here even after turning 80. And so, but of course we always meet with the adult endocrinologist also prior to seeing the patient together, so to try to have that doctor-to-doctor communication, so. - Excellent. Well, I think this has been a great conversation about children and adolescents with growth hormone deficiency, and I appreciate your time today.
- [Lars] It's been a pleasure, Dr. Miller. Have a nice evening.
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