MIC CAVAZZINI: Welcome to Pomegranate Health, I’m Mic Cavazzini for the Royal Australasian College of Physicans. In the previous episode, we heard speakers at the RACP Congress discuss the formative first 1000 days of life, and the lifelong repercussions of childhood.
Today, we focus on another critical period of development—adolescence. Everyone knows that this is a turbulent time. Teens are faced not just with changes to their bodies, but to their moods and thought patterns as well. They might also be saying goodbye to familiar carers in the paediatric department, and in Episode 11 we heard how important it is to ensure a smooth transition to adult services, which tend to be more anonymous.
Up to two thirds of health professionals report discomfort treating adolescents and this is especially true for young people with special needs such as diabetes, transplant management or intellectual disability, but. Young people with complex chronic conditions often fall into the “too-hard basket”, and as a result report feeling suddenly abandoned or cut off when their care is handed over to another service.
However, the three speakers you’ll hear today have an optimistic message. They explain that improving this transition process doesn’t require going way above and beyond regular practice, it just needs a little more coordination. Note that one acronym you’ll hear a few times today is DHB, which refers to District Health Board—the equivalent of a Local Health District in Australia.
The first talk was from Dr Fran Mouat, who is a Consultant Paediatric Endocrinologist and Diabetologist at Starship Hospital, New Zealand’s main tertiary centre for children. She is also Co-Chair of the National Clinical Network for Intersex Disorders. Dr Mouat outlined Starship’s transition program for young patients with diabetes, and some of the data showing its impact on glycaemic control after they’ve left paediatric care.
FRAN MOUAT: So we're going to start off by talking about what transition is, what the needs are, and the benefits, what the barriers are to developing a transition model of care. A little bit of talk about what that model of care could look like, and then I'm going to describe to you how we do transition in the Starship Diabetes Service.
What is the need? Well we know that increasing numbers of young people are surviving into adulthood with chronic illnesses that perhaps some years ago they may not have reached adulthood. So things like cystic fibrosis care, congenital heart disease, cancer, inherited metabolic disease, transplantation—some of these areas that will be discussed specifically today. We're seeing more and more young people surviving through into adulthood with different needs as they move into that space.
We know from research that between 25 and 65 per cent of young adults receive no or reduced medical follow up. And in the diabetes area, adverse diabetes-related outcomes have been reported, and these include things like poor glycaemic control, increased post transition, diabetes related hospitalisation, so perhaps with DKA or seizures—more rapid emergence of chronic disease, diabetes complications and premature mortality.
So what are the benefits? We know that you can see improved disease control in children that are transitioned well. There's improved follow up. It's been shown it has improved patient satisfaction and also improved disease and self-management knowledge. One of the things that I think is really important is confidentiality and this is something that our young people talk to us about in clinic. So confidentiality has been identified as one of the most important attributes of an adolescent friendly practice, and that's coming from those adolescence themselves. And interestingly paediatric clinics are less likely than general practice to offer confidential services to adolescents, as a general rule. A study in the U.K. talking to over a thousand students showed that more than 50 per cent had health concerns they wished to keep private from their parents, and a quarter would forego healthcare in some situations if their parents might find out. So it is really, really important.
So what are the difficulties with transition? What stops us from working well? So it is seen as challenging and from the providers the issues that come up are: it's time-consuming, they don't feel there's adequate training, there's financial costs. And there's some other things there—so discomfort with the whole process, maybe just not feeling terribly confident, they feel it doesn't apply to their practice, or perhaps difficulty accessing appropriate resources.
There's some studies looking at what different ages parents think transition should be, children think should transition should be, and providers think that transition should be. The parents think it should be much later, the children are somewhere in the middle. The physicians think it should actually occur earlier, so the range is somewhere between 12 and 16.
Some studies have shown that transitioning too early from paediatric to adult healthcare may be associated with worse glycemic control in the diabetes clinics and some studies have also shown that physician continuity is really important. So having a relationship with a doctor that follows you through that process and also a care coordinator is really important to oversee the care and make sure that things are moving smoothly towards transition.
So a planned structured transition in the ideal world to adult diabetes care is expected to improve outcomes and help ensure continuity of care. We think that organised transition service will decrease the rate of loss to follow up in the long term. Our ideal would be to do a combined adolescent/young adult clinic and this has been proposed as the optimal model and I've actually worked in a model that did this in real life in Monash Medical Centre in Australia. I worked there for two years and they actually run an evening clinic from 5 till 9pm once a week where it's for ages 15 up to 25—it's staffed by both paediatric and adult physicians and the child gets to choose when they feel ready to start meeting with the adult doctor. We do joint consultations, and the nursing staff that are there are the same people that they've been familiar with throughout their childhood. So there's no big change, learning to meet new people—it's much easier. And I think that's a fantastic model.
So what do we do here in Auckland? Well one of the things we do that I think is a real positive is something called Stepping Up Day. So this actually happens before we begin the formal transition process and we invite all of our 13 year olds along to a fun day at one of our local YMCA facilities, and this is just basically a day of fun and education focused on the child. Because what we realised was that when we're seeing these families in clinics we're pretty much focusing on the parents—you educate the parents when they're diagnosed, then you educate the parents on what to do. And you tend to forget that actually we probably need to re-educate the child because they were diagnosed when they were three, they don't remember all that stuff. So this is just a day of summarising, going back over some of the basics. It's staffed by the paediatric endocrinologist, the diabetes nurses, we have a psychologist there. We often have a sports person from the community comes in. We have young adults with diabetes who talk to the kids about their real life experiences.
And one of the best things we do with this, it's really good, during the day there's a box in the middle of the room and the kids are allowed to write a question—anything they want goes in the box. The last hour of the day is a panel where all of the adults are there sitting up the front in full view and they have to answer everyone of those questions—so nothing is out of bounds. And it's really good—the sort of things we get asked are just amazing. So it has changed our focus of education a little bit. Some of the kids actually have fantastic knowledge and it's been really good to see that they've been taking a lot more in in clinic.
So this is what our clinics look like. We have around 500 children with various forms of diabetes. Our adolescent clinics were run as separate clinics but at the same settings. So the paediatric service is regional—we see everybody from the whole of greater Auckland area, but once they transition to adult service they go into their domicile DHB, so that could be Central, West, North, East, South, and so on.
So how does it work? They enter into the programme at 14. There's always an interview with the child and the family explaining what our programme is, what the benefits of it are. At 15 years of age there's a negotiated care consultation and that's where we talk to the child about their regime in a bit more detail, how things are working, how they want the last year to work for them. We do two formal transition preparations in that final year where we go through a lot of the education material asking them to fill out some surveys—making sure they've taken on the key messages. And we're usually targeting discharge at around 16 years. That's not a hard and fast rule, that's just a rough aim for us. There are some situations where we might keep a child longer.
This is always a multidisciplinary approach so the dietician, psychologist, doctors and nurses are involved in this whole process. The adolescent diabetes specific education is ongoing right through the programme—we've got lots of good resources both online and paper.
So just to present briefly for the last few minutes some of the data from our transition programme. In this particular study we looked at 322 of our young people with diabetes, the majority of which had type 1, which is very typical in paediatrics, and the majority of which were European.
So what were the outcomes? So if we look at first of all diabetes control, because in the diabetes world this is the gold standard way of monitoring things. So what we've got here is HbA1c, up the side there. So the target is less than 58, so down here. Everybody increases after transition. Comparing the transition group to the non-transition group, the HbA1c was a lot worse in the no transition group to start with and it continued to get worse. But they also continued to get worse in the transition group just at a lower level. So at least we started them from a better baseline.
And then looking at the retention rates for the transition versus the non-transition group, so these are people who attended their young adult services for at least five years, you can see that 92 percent of the transition group versus 71 percent who did not transition. So they did seem to stay within medical services a little better.
So just briefly, we showed good capture and retention rates following transition in our service. We showed that young people in a transition programme did have better metabolic control at transition and we did see some significant ethnic variation and deprivation. So young Māori and Pasifika people did have worse metabolic controls than their New Zealand European peers, and a higher deprivation score was associated with worse metabolic control.
So to summarise I think transition is important and even a small service based programme like ours can make a big difference. It doesn't have to be perfect but making a start is great. And auditing the outcomes is really useful and has certainly highlighted to us some areas of need to focus on in particular looking at ethnicity and deprivation.
MIC CAVAZZINI: The next presenter we’ll hear from is Dr Colette Muir, also from Starship Health. She’s a developmental paediatrician involved with the Community Mental Health Service and the Child Protection Unit, Te Puaruruhau.
Her special interest is providing gold-standard healthcare to adolescents with developmental disabilities, most commonly Down syndrome, autism and cerebral palsy. These teens are the least likely to be supported in the transition to adult care. According to a U.S. study in the journal Pediatrics, only 40 per cent of youth with special health care needs received dedicated transition support and for those with autism the figure may be as low as 14 per cent.
In fact, intellectual disability is associated with a lower quality of care throughout the lifespan. “Diagnostic overshadowing” is the phenomenon by which the complaints of such patients get attributed to the disability itself, rather than being investigated thoroughly in their own right. While this might in part be explained by difficulties in communication, bias plays a massive role.
People with intellectual disability and mental health disorders have higher prevalence of untreated physical illness. A retrospective study published in the 2017 BMJ Open reported that Australian adults with intellectual disability are twice as likely to die from of potentially avoidable disease than the general population.
Similarly, a U.K. study in the 2014 Lancet found that the median age of death for females with intellectual disability was 20 years lower than those without, and for men there was a 13 year disparity. Contributing factors included problems in advanced care planning, adjusting care to changing needs, adherence to best practice, and carers not feeling listened to by health professionals.
The RACP is a signatory to an international consensus statement called Equally Well. This aspires to provide equitable health care to patients regardless of disability, and there is also an RACP position paper about transition of young people with chronic disability needs. I’ll let Dr Collette Muir summarise the principles of adapting daily practice to better serve such patients with complex conditions.
COLETTE MUIR: Nonetheless what I thought I'd do, I'm going to give you ten tips that you can do in your practice next week—be you work in paediatrics or adult healthcare services. Ten tips that you can do to actually try and operationalise some of this transition type work.
So tip 1: Think process. If this is a coordinated process we need to be doing things like starting early. Start the conversations when the young person in front of you is 12 or 13 years old. And don't stop talking about that process until the person is 25. So make sure you're thinking about this young person and their transition needs when they come to you.
See the patient—that sounds silly but often actually to be able to talk about transition we need to value the work that we do, the role we can have as doctors and medical for people with disability. We need to advocate systems that actually allow for us to follow young people up be that in our paediatric or our adult services.
I think we need to provide excellent clinical care to people with disability and some time in those seven, eight years of that transition process, make the time to not only deal with the thing that's sitting in front of you but to actually review those clinical notes and see what are the outstanding parts of this young person's care.
I think often in paediatrics the best thing we can do to help our adult colleagues is actually sort stuff out while they're still under the paediatric services—if they need their teeth sorted, if they need to see the orthopaedic surgeon about the hip, make sure you do that now so that you can sort of hand over a bundle of care with a care plan around it. And the other important aspect I find is actually saying to the parents, “You're going to be transferring out of our paediatric services in five years’ time, has anything been said to you along the way of something that you thought, is there anything outstanding or anything you thought need to be done?” And you'll often get feedback going, “Oh yes, the orthopaedic surgeon said that sometime when we were 13 we should go and get those feet seen to again,” or whatever. So ask the parents that one as well.
Whatever is the cause of disability there's likely to be a clinical guideline or an annual screening guideline somewhere on Google. And when you found those not only provide your excellent care along those lines but actually communicate to the other people in the care team who may be a GP or may be in a different healthcare service. There's very good evidence based value around evidence for the value of annual health screens for people with disabilities. And of course the CHAP Program, Comprehensive Health Assessment Program even has a Medicare billing code, I understand, in Australia. The Cardiff Health Check is the English version and is free to download—and good evidence to say that that's a tool that we should be using throughout adolescence.
Tip 3: Plan for the future. What we know from surveys we did in New Zealand is that parents are worried about this stuff but paediatricians aren't talking to people about it. And actually I like to think about planning for who's going to provide the preventative healthcare, who's going to provide the acute healthcare, and who's going to do the chronic disease management?
When it comes to preventative healthcare one tip would be often ask—ask a bit about the GP that the family currently see. Because often what I find is, “Oh yes, we've got a GP, we've known them forever, we get on really well with them.” And I say, “Well when do you think they might be looking at retiring?” “Oh probably in another five years.” “Ok, well given that's the time you're going to be transferring to GP care let's actually start to strengthen those relationships with another GP in the practice as well so that you've got a good relationship with your GP by the time we come to transfer of care.”
And making sure that young people are very much part of that discussion, finding the GP themselves. There's nothing worse than acute care, of a family witnessing an argument in an ED between staff because no one wants to look after themselves or their child with a disability. Make the plans beforehand, at what stage the acute care is going to transfer from one to the other and communicate that well to the family.
We've talked about the chronic disease management. If there are specific guidelines, if there's specific equipment that needs to be available when you come into an emergency department, make sure you make that known and available in the clinical notes.
Tip 4: I call this tip handshake—I have scoured the quality and safety literature about handovers when it comes to transition with an adolescents and there's very little. But I think we can learn from all the other good handover literature, that actually you're much better to know the person you're transitioning to, and we call it a handshake, not a handover. Know the people, have a conversation—it's much better than writing a blank clinical letter.
Tip 5: Think disability access. We know that it is hard for people with disability , they have extra barriers when it comes to accessing healthcare and it's not just the physical access, although that's part of it. It's actually things like communication–does this young person use a communicate device? How do they communicate? Do you need to draw pictures as you talk? What is the level of health literacy? How do we teach that? So think about that and when you're doing this transition of care think of how you can document that information so it's available to your adult colleagues.
Tip 6: Think youth health. We've talked about the youth health perspective today, and the important thing to know is young people with disability have the same youth health issues. Yet we are much less likely to offer that same care to our young people with disability. They're just as likely to be sexually active, you need to go through the same procedures that you would for any other young people and make whatever accommodations you need to make.
Tip 7: Think family. Often for our young people with a disability there's long term care needs that we're thinking about. So make sure when we are going through this transition process that we're getting that right balance of confidentiality which is vitally important and independence for that young person with that really important supporting role that the family and whanau can bring.
For some young people with a disability it's worth thinking about the legal processes such as welfare guardianship and we're often as paediatricians much less familiar with that than our adult colleagues who had that experience much more often. So that's another one of those issues that we need to think about and communicate with our adult colleagues about.
Tip 8: I think we need to optimise the documentation. These children and young people with disability often have overload of medical notes. How are you going to get the right information in front of that ED registrar at 2 o'clock in the morning that actually explains this young person's medical needs that they're not going to have to sort through 132 letters that are on our current system.
I think some tips are: make sure when you do clinic letters copy them to the young person as well as the parents. Often when I've written a summary letter I'll get the young person to take a photo of that letter on their phone so I know that they'll always be able to bring up that particular letter when they're in any healthcare settings. And there's a good role for some patient completion documents and our Health and Disability Commissioner in New Zealand put together a health passport that was more an opportunity for a person—an adult or a young person—to say, “This is what you need to know about me.” And there are other health passports out there. So thinking about which ones are used in your particular organisation that you could use.
Tip 9: I think we need to challenge ourselves. How do we improve clinical knowledge in the things that we don’t know much about? We've all got a piece of knowledge and how we put that knowledge together. I can bring the disability perspective, our GPs have a fantastic community perspective, our adult colleagues know all about adults that we know nothing about in paediatrics, so how can we bring all that knowledge together?
Tip 10: And then we do actually need to raise the profile of this stuff, we need to raise the profile of transitions and disability. We need to advocate strongly not only for individuals in our care but for processes that better support these young people, and we also need to think about what is the research that's actually going to make a difference.
Most importantly, I think, be specific. I'm finding in my clinic appointments I'm trying to say: if this is a case of transition I'm going to give one goal to this young person to achieve before I see them, one goal to the family—it may be something like “find a GP”, and a goal for myself which might be: I know I'm going to be having a conversation with my adult colleagues in three years but actually I'm going to make sure I do that before I see this family in 12 months’ time.
So I think my conclusion would be in most services there's a very long way to go towards having optimal transition services, but I think you can actually do something sensible today and it might make a difference.
MIC CAVAZZINI: Dr Rachael Harry is a consultant hepatologist at the New Zealand Liver Transplant Unit at Auckland Hospital. She sees all kinds of patients with liver disease, but also leads a transition program for adolescents who have undergone transplants early in life.
RACHAEL HARRY: As you look around a room like this there will be lots of different people who come from lots of different areas, some people will have fully-fledged services like Fran’s, some people will just be at the start of their journey thinking “It’s all too hard.” It all started for me about maybe eight or nine years ago when my paediatric colleagues at Auckland Hospital and Starship asked me to be involved in developing a new service for adolescents and young adults who’d had liver transplants in childhood. I don’t think my response was that enthusiastic at the time, to be honest, it all felt like an aful lot of hard work to me, but they proved me wrong.
I am hugely passionate about this work and largely because I went into it when I've been a consultant already for ten years and I've probably had the most rewarding part of my career from this work. But we started very imperfectly, and I would encourage you to do that, don’t try and be a youth health physician if you’re not one, we certainly weren’t we just started with an enthusiasm for working with young people.
And over time we’ve developed a service that we like to think looks something like this with the young person very much at the centre, having them looked after by the paediatric team who they know well and the adult team who they come to know well, means that we have an opportunity to develop meaningful relationships with the young people and their families.
And we tailor the healthcare very much to the young person and what their needs are, and often for me that means not talking about their liver transplant but talking about contraception, acne, and risk-taking behaviour like drugs and sex and rock and roll, which doesn't always go well with a liver transplant. So you often have to flex in what you're providing. What I've learnt as I've worked with young people more and more is they know this stuff, they know they're supposed to take their tables, and ramming down their throat and threatening them really doesn't help. Encouraging them to a meaningful life that they can enjoy and see reason why they want to stay well—that's what really, really helps.
We’re much more actively managing non-adherence. We've got a pharmacist who works with us now who goes out to the communities and checks on whether pills are being picked up. And a really big piece of work for us that we're going through now is trying to work with our community partners much better because I think that's where the real good stuff goes on for young people. And, of course, we now accept, and I think it's really important to remember, for those of you who are adult physicians in the room, commonly the buck actually stops with us to do the tough stuff.
But we're still learning—we don't have enough youth involvement, we don't have a peer support network and these are all things that we still hope we'll be able to achieve. We've actually been looking at restructuring our service on the basis of that case and I came to think of it a bit like this, couldn't help myself, but to put this little island—the New Zealand Liver Transplant Unit—I sit there with my team and we try and do everything right. But regardless we are an island—all of the good stuff for young people is out here in their community, not in my hospital. And sometimes that feels such a long way away that this water around my island may as well be full with sharks. Now if I want to get my young people being integrated with their peers and their school and their family and their own culture and their church and NGOs and child protection, and unfortunately for some young people youth justice and mental health services, I need to build bridges across my shark-infested water.
Now if you have a youth health service, a specialist youth health service in your area, use them. They have services including mental health services, but they have youth workers and social workers who can walk alongside these young people in their own communities, because they can be like your drawbridge you see, they can get you across there quite easily. But it is important I think to keep the parents on side. Yes, it's very important to provide confidential healthcare, but the parents are the biggest link into the communities for these young people, and I often hear my adult colleagues say things like, “Oh we chucked the parents out.” Not going to work I don't think, if you do that too early on.
So maybe just a bit of a different way of looking at services which I hope's been helpful. And I’ll, as customary, say thankyou for your attention, but just to summarise, I would implore you to take this quote. would encourage you just to take this quote, “Start where you are, use what you have and do what you can.” And if the only person you have is yourself then you have your clinical knowledge, you have your clinical skills—add a little bit of training into that and you'll be on your way to making a start.
I've found a lot of strength from getting specific training in youth health, both for my confidence and also to be able to make connections with people who've helped me as we've been putting this service together. My fabulous team of paediatricians, paediatric and adult nurses and psychologists and pharmacists and adult social workers are the people who keep me sane while I try and do some of this work. Keep learning, keep developing—would be my final message to you. Thanks a lot for now.
MIC CAVAZZINI: Many thanks to Fran Mouat, Collette Muir and Rachael Harry and for permitting me to adapt their lectures for this podcast. The views expressed are their own and may not represent those of the Royal Australasian College of Physician.
You’ll find links to their presentations from Congress 2019 at our website, racp.edu.au/podcast. There’s also a list of academic papers mentioned in the show, and some of the transition services through Childrens’ hospitals in Australia and New Zealand. And feel free to leave your own thoughts on the subject in the Comments section
Don’t forget, Fellows of the RACP can claim CPD credits for listening—there’s a link on the web page that will prefill your logbook for you. To find more CPD e-learning modules and videos just search for Online Learning Resources @ RACP.
I’m Mic Cavazzini. Please send any feedback to email@example.com. I hope to hear from you.