Ep 33. Trainee Publishing Programme 2023: Dr Lauren Huckerby

What evidence is there for effective transitional care in young people with chronic pain, and what should ideal transitional care look like?

Dr Lauren Huckerby joins Dr Diederik De Cock to discuss her recent systematic review - one of the winning papers from the 2023 Rheumatology Advances in Practice Trainee Publishing Programme.

Dr Huckerby is a paediatric and adolescent rheumatology registrar at Royal Manchester Children’s Hospital.

Read the winning paper: Growing up with chronic pain: a systematic review of the evidence in transitional care for young people with chronic pain 

Keywords: chronic pain, transitional care, paediatric, adolescent, JIA, juvenile idiopathic arthritis, systematic review, rheumatology

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Transcript

Voiceover  0:01 
You're listening to the Talking Rheumatology Research podcast brought to you by the British Society for Rheumatology.

Diederik De Cock  0:15 
Hi, everyone, and welcome to this new podcast from Rheumatology Advances in Practice. So today we have a very exciting talk about growing up with chronic pain. And this is a systematic review of the evidence in traditional care for young people with chronic pain. And this article is by Lauren Huckerby. So welcome Lauren, and thank you that you could join us today.

Lauren Huckerby  0:43 
Thank you, Diederik, for inviting me today to do this podcast. It's a real pleasure to be here to talk about transitional care for young people with chronic pain.

Diederik De Cock  0:52 
Lauren, why did you do this research?

Lauren Huckerby  0:55 
So working in clinical practice as a paediatric registrar working in rheumatology, it became, you know, clear to me that young people were having more and more difficulties when it came to the time when they were going to move to adult services. And actually, in my clinical practice, it was sometimes young people with chronic pain, for example, a primary pain condition like chronic regional pain syndrome, where they were having difficulties because it was tricky knowing where they would go in adult services - would they be looked after by the GP or by adult rheumatology? Or would it be a kind of tertiary pain, adult pain service, but it wasn't always young people with chronic pain as their primary pain condition. It was sometimes young people who had pain as part of their long term health conditions. So we've got young people with JIA, young people with lupus, but even thinking back to my days as a paediatric registrar working in clinic with young people with sickle cell disease, they were also having a tricky time when it came to transfer to adult care. And things like, you know, their transitional care programme didn't always consider pain and other aspects of generic transitional care that are really inherently linked with pain, things like fatigue, and sleep. So it wasn't just young people with pain as a primary condition, but pain as secondary to long term health conditions, in my own clinical practice, who were finding things tricky at the time of moving to adult services. So I thought, you know, I really want to look into what's out there, and with my supervisors, Janet McDonagh and Rebecca Lee, we thought, you know, we're going to brainstorm this and it would be really good to embark on this systematic review looking into transitional care for young people with chronic pain.

Diederik De Cock  2:47 
Thank you, Lauren, I think it's clear that pain is an important topic, especially for children. And so what were the results of your search of literature?

Lauren Huckerby  2:57 
Yes. So in terms of our results, so I searched four different databases of the literature and identified 98 papers. And there were 14 of these which were relevant after abstracts screening, but actually after full text review none of them looked specifically at the evidence with respect to transitional care for young people with chronic pain. So this means that we didn't find any research investigating transitional care designed for young people with chronic pain other than evidence of need for studies which are investigating this. But I thought that today I would tell you a little bit about four of the papers because they highlighted the importance of considering transitional care for young people with chronic pain and it just also gives you an idea of the kind of papers that we were seeing in our review.

So the first one was a paper by Stinson in 2014, and this was a needs assessment for the development of a digital self management plan for young people with chronic pain, and it highlighted transition to adult care as a major theme. Another one was a commentary article by Forgeron et al. in 2017, which did suggest some strategies for transitioning young people with chronic pain and really highlighted the need for transitional care for young people with chronic pain. Then, an article published in 2019 by Kayle was a longitudinal case note review for people with sickle cell disease. And this noted that chronic pain and sickle cell disease was a significant issue around the time of transfer to adult services. And Saulsberry in 2019 described a transitional care programme for young people sickle cell disease, but there was no specific mention of knowledge and skills training with respect to pain management, and that's something that's core to transitional care. And so I think that, you know, it's a really important finding here that there was a real lack of research considering chronic pain in the context of transitional care.

But really, I want to emphasise that we also shouldn't completely disregard the kind of generic transitional care literature, because there is strong evidence for the benefits of transitional care for long term health conditions, and some of this can absolutely be applied to young people with chronic pain. So if I give you an example of a paper written by Colver et al. in 2018 who proposed three beneficial features - well many beneficial features - of transitional care services, but there were three that were associated with better outcomes for young people with long term health conditions. And the first one was, was promoting health self efficacy. And in transitional care, that's something that is really key, and absolutely, for young people with chronic pain, this would mean having, you know, developing pain management skills, developing an emergency care plan for acute flares, for example. The second one was appropriate parental involvement, this is really, really relevant for young people with chronic pain. And then the third one was meeting your adult team before transfer to adult services. And this is something that we can absolutely apply to young people with chronic pain  if we think that... I think I may have mentioned that it's difficult sometimes to know where the young person will go to in adult services when they have a primary pain condition - will they be looked after by an adult pain service or by adult rheumatology? Or will it be by their GP? But the most important thing, you know, for example, if it is the GP is to ensure that the young person is engaging with their GP, before they move to adult services. And if they aren't, then why not? And exploring that with a young person, before they move to adult services. This is to prevent gaps in care, to prevent, you know, non adherence, etc. that could make their disease course, kind of worse for them. So it was just really the point that we don't want to throw out the existing literature that's already there for generic transitional care and we would absolutely advocate that pain management should be kind of part of generic transitional care that it should be a core component of transitional care programmes, particularly in rheumatology.

Diederik De Cock  7:39 
Thank you, Lauren and yeah, I agree. Like, sometimes a literature review can be overwhelming evidence, sometimes you can have like, meh meh bit of evidence, and sometimes you have almost no evidence, and then it's good, like you've done to take a step back, and to look more at the broader picture. And that's also why my next question will be also a bit more like taking a step back, and maybe describing for our public, who are mostly rheumatologists, what is traditional care? And maybe more like a personal question for me... how would you describe your ideal national care plan for patients, for example, with juvenile idiopathic arthritis?

Lauren Huckerby  8:23 
Okay, thank you. Two very good questions there. Okay. So, in terms of just describing what transitional care is, I really want to talk about this, and I want to tell you what transitional care is not first of all. So transitional care is not just a one time event where the young person moves from children's to adult services. We like to talk about transitional care being a lengthy process. It's a tri phasic process, it starts in early adolescence. We want to gradually prepare that young person to be able to navigate their adult world in terms of their health condition. And even after they've transferred to adult services, transitional care is still ongoing, and we have to... so that's the third phase when they're, when they're in adult services. And we need to really acknowledge that transitional care must be developmentally appropriate. So the brain of these young people is still developing even into their early 20s into their mid 20s. Things like skill acquisition, decision making skills are still happening and developing into their 20s. And that's really important because it means that transitional care is still ongoing in adult services. And I'll give you an example of transitional care and skill acquisition. And if we acknowledge that, at the same time that we're moving young people from children's to adult services, there's so many other things that are happening for these young people at the same time. For example, they might be moving out of their family home for the first time. They might be starting a new job, starting university, a new course. If I give an example of a young person with a primary pain condition like chronic regional pain syndrome, and they are starting a new job, they might not know how to talk to their employer about their condition, they might not know what their diagnosis is because pain conditions are sometimes difficult to diagnose, and they might not know how to communicate their health condition their health needs. They might not know about disclosure, they might not know what their rights are. And these are skills that are really tricky actually to develop, and we can't assume that someone who's at the age of 17, or 18, will be able to have the skills to do that. And this is why we really need to support them in those years, where they're, they're getting their new jobs, and all these transitions are happening to develop the skills to do this. And actually, you know, not having the knowledge and having the skills are two different things, whether they've understood, you know, and they've developed those skills are two different things. So this is why transitional care, you know, should address medical, psychological, social, and vocational issues as young people move from children's to adult services. And it's a tri phasic process. So it's still ongoing when they're in adult care and it has to be developmentally appropriate as well. And you ask me, from a personal point of view, how would I like to see transitional care? You know, what would it look like for young person with JIA, is that the question?

Diederik De Cock  11:37 
Yeah, like, like, what is like the ideal world? Because I feel that at the moment, we are not right there yet?

Lauren Huckerby  11:44 
No, absolutely, we're not there yet. So I think so, you know, having discussed with my supervisors, with Janet McDonagh and Rebecca Lee, who are really the experts, and thinking more about, you know, what we have currently, which is we do have transitional care programmes for our young people. But in terms of pain, and you know, incorporating that, because that can be a big part of a young person who has JIA , it might be that they have some pain associated with their JIA, they might say they have no pain, but in, you know, across the lifespan, they might develop pain associated with their condition. So I would say that a transitional care programme should be generic. So it should be a transitional care programme that we have for all of our long term healthcare conditions, which is the same, but also asks about pain, asks about sleep, asks about fatigue, and allows the young person, you know, I think that pain management should be part of these generic transitional care programmes. And I think if we were able to do that for JIA but also for lupus, for all of our rheumatological conditions and other conditions, you know, that we have, you know, cerebral palsy, sickle cell disease, these conditions also have a big pain component, actually, having a really good generic Transitional Care programme, which incorporates all of these things, which are relevant, like pain, fatigue, and sleep would be really helpful, and could really help these young people to, to kind of develop and take charge of their own health and be able to navigate that adult world. But really importantly, that transitional care involves allowing them to develop skills and not just the knowledge.

Diederik De Cock  13:44 
Thank you, Lauren. I think it's the story about like growing up and trying to help also children growing up not only in their own life, but also in healthcare. And I think you're completely right, that trying to make them more self efficacious, actually more resilient, is really important there. Now, this is the end of the interview. Lauren, I thank you very much for your enthusiastic input here. I can see that you're very caring about this topic. And I hope to see more research about that from you in the future. Are there any other things you would like to share with us about your research? If not, no issues.

Lauren Huckerby  14:37  
I think just in terms of like, take home messages if there's anything that I'd like people to remember from this talk is that I think number one would be that, you know, we want all young people to be supported in learning how to take responsibility for their own health, and that includes pain management, and that also includes navigating the health services, which can be tricky for young people, particularly young people with pain. And we know, it's really important that our services are developmentally appropriate, whether that's in paediatric care or in adult care, we need to acknowledge that they have to be developmentally appropriate, you know, and brain development is still happening into the 20s. And I think I just make the point again, about when we move young people to adult services, and if it's going to be the GP, that we really need to make sure that they're engaging with their adult service before they move to adult services.

Diederik De Cock  15:38 
Thank you, Lauren, that's very clear and I think most of our listeners will completely agree with this. But it's good to hear that when someone says "Can somebody think of the children?" that we know there are some people working on this. So I will thank our audience for listening and this was Diederik De Cock for Rheumatology Advances in Practice, and hope to hear you next time.

Lauren Huckerby  16:02 
Thank you.

Voiceover  16:06 
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