Editor’s note: During the International Symposium on Paediatric Pain (ISPP), five pain researchers participated in the PRF-ISPP 2023 Correspondents Program – made possible by generous contributions from Solutions for Kids in Pain (SKIP) and the Centre for Pediatric Pain Research (CPPR). As we prepare for ISPP 2025 – taking place 17-20 June 2025 in Glasgow, UK – we’re taking a look back at some highlights of ISPP 2023, and some of the people who made them possible.
Adrienne Harvey – physiotherapist, senior research fellow at the Murdoch Children’s Research Institute, and associate professor at the University of Melbourne – has been a clinical scientist and researcher for the past 30 years. She has an extensive research background on the management of care for children with cerebral palsy in pain, and she has collaborated with key pain clinicians around the world.
In the transcribed interview below, Harvey speaks with PRF correspondent Jéssica Ding (McGill University, Montreal, Canada) at the 2023 International Symposium on Pediatric Pain in Halifax, Nova Scotia, Canada, about working with children with cerebral palsy living with chronic pain, and creating a more inclusive self-reporting system of pain severity.
Tell me a little bit about your research and your background.
My background is in physiotherapy, but I’ve been doing clinical research for the last 20 or 30 years. My research has always focused primarily on children with cerebral palsy, and more recently it has focused on their chronic pain. We realized, probably about [seven] years ago, that it was more common than we realized, and it wasn’t being managed very well. So we started looking more deeply into chronic pain in children with cerebral palsy. We really had to start at the beginning – trying to understand it a bit more and see its prevalence in cerebral palsy patients – then work from there. Now, a lot of my research is based around how to assess pain in children with cerebral palsy, particularly those children who have complex communication needs who might find it difficult to self-report.
What is your current research focus for children with cerebral palsy?
In about 2017, I was involved in some research looking at dystonia in children with cerebral palsy, because it’s quite tricky and causes lots of issues. When we had a meeting with clinicians, people with cerebral palsy, and parents of children with cerebral palsy, we asked where they thought our research directions should be going. Pain kept coming up time and time again as something that was quite common and poorly managed, or even understood, in children with cerebral palsy. That’s when we thought, “Okay, we need to really focus on that.” When we looked into the literature on pain in children with cerebral palsy, we realized that there really wasn’t much and no one really understood it very well. So we started from the beginning – looking at the prevalence of chronic pain in children and young people with cerebral palsy – then trying to understand a little bit more about the lived experience.
We realized that it was very common. Up to 75% of children with cerebral palsy will have pain at some point in their life. So now what we are trying to do is work out how we should be assessing pain in these children, particularly in those who have complex communication needs. We want their voices to be heard, and let them have input [regarding] their experience of pain and how to manage it. We’re doing a lot of research on modifying ways that pain is assessed in children without disabilities, so that children with disabilities can self-report their pain in a similar way.
When you speak about chronic pain, for someone who doesn’t necessarily work with this particular population, where does the pain stem from? Is it from the condition itself, or perhaps treatments?
I think that is something we are still trying to understand more. For those who might not be aware, cerebral palsy is a big umbrella term. It’s a very heterogeneous condition, meaning that no [two children are] alike. You can have children with very mild motor or movement problems, all the way up to children and young people who need to use a wheelchair for mobility. What we do know is that those with more significant movement problems have more pain and, as they get older, they get more pain. As far as body areas and what’s going on, one of the contributing factors we understand is that these children often have a lot of spasticity or dystonia that will cause issues in their musculoskeletal system and contribute to chronic pain.
Occasionally, you’ll get stories of individual situations. One young woman I know that I’ve worked quite closely with, she was getting a lot of headaches, and the medical staff were saying, “It’s just your cerebral palsy,” which is not even trying to understand where the pain’s coming from. It turned out that, eventually, she found someone who understood her condition a bit more and found she had increased muscle tone in her neck, so they put her on oral baclofen – to help relax the muscles – and she hasn’t had a headache since. So it’s really about trying to disentangle what might be going on for people with cerebral palsy, as well as what might be going on even if they didn’t have cerebral palsy.
Are there some assessment tools that you’ve been looking into?
Two PhD students that I’ve been working with in particular – Nadine Smith and Meredith Smith, based in Australia – have dissertations that are focusing on pain assessment. Together, we looked at all the tools out there used for all children who have chronic pain, and we assessed the quality of those that have either been used in cerebral palsy or could be used in cerebral palsy. We’ve whittled the list down from about 60-something to maybe 25, and then matched those tools to different pain domains – impact on emotional and physical well-being, quality of life, pain intensity, things like that.
Meredith [Smith] picked one assessment area that is particularly underdeveloped in cerebral palsy – the impact on emotional well-being, i.e., pain coping, pain catastrophizing, things like that. So far, she has picked two tools that people with lived experience have said are quite useful but needed adapting for the cerebral palsy population. Her dissertation, now, is focusing on what modifications need to be done to these tools so that they are appropriate for people with cerebral palsy. It’s not only about the content and the way things are worded, but also, if they’re using communication devices, how can we help them complete the tools? If they have visual issues, how can we make it visibly easier for them to complete the assessments themselves? There’s a whole range of things we have to consider, and while there are lots of tools that we could use, we’re trying to narrow down some of the key ones. If we modify them slightly, then they can be used quite easily for a range of children and young people with cerebral palsy.
What are some strategies for clinicians that you think they should be integrating into their practice, not only to prepare the individual with cerebral palsy for adult care, but also for clinicians themselves to treat their patients better?
I think that we’ve still got a bit of work to do in that space, and that’s where we want to focus more of our research in the next few years. I think children and families need online education platforms so they can understand pain a bit better and know the questions to ask their clinicians, as well as strategies to self-manage their own pain a little bit better. I think we also need education platforms for clinicians, because we know that both pain itself and cerebral palsy are very complex. For instance, my background is in cerebral palsy, so I know a lot about cerebral palsy, but for the past seven years I’ve been learning more about this other facet pertaining to pain.
Prior to being involved in a lot of these pain meetings and collaborations with pain researchers, I went to cerebral palsy conferences and spent a great deal of time with clinicians and researchers in the cerebral palsy world. At the time, I had this naïve view that we were managing pain – I didn’t think we were managing it well, but I thought we were doing okay – but then when I learned more about pain and went to some of the pain conferences, I realized that we really have a long way to go. I think the pain world is saying the same thing about disability; it’s like, “Right, we’ve also got a lot to learn about disability and how it relates to pain,” and so I think the sharing of ideas and information and research is really important.
We all need to work together – I’m learning a lot from my pain colleagues and they’re learning a lot about cerebral palsy from me – so I think that the only way we’re going to make gains is to work together. Creating education for clinicians should include some aspects of pain science and pain management, as well as the compounding effect of disability. I guess for now, when we haven’t created those just yet, I think it’s about talking to your fellow clinicians and other people that might have expertise in other areas.
Since this interview was conducted, Adrienne has published research in Quality of Life Research examining tools for assessing the impact of chronic pain on emotional functioning in children and young people with cerebral palsy. Results from this study have led to multiple suggestions including, but not limited to, improving pain questionnaires by enhancing accessibility for people with complex communication needs or cognitive impairments. She has also published multiple reviews of assessment tools for chronic pain in children with cerebral palsy in BMC Medicine and Disability and Rehabilitation.
Jéssica Ding is a master’s student at McGill University, Montreal, Canada.