National keynote speaker Verity Pacey talks about the recent research advances in children with connective tissue disorders and skeletal dysplasias.
My research focuses on physical activity, function and quality of life of individuals with congenital disorders, with my main interest in children with connective tissue disorders and
skeletal dysplasias. This area of research developed from my previous clinical work in the connective tissue disorders clinic at The Children’s Hospital at Westmead. I began researching the effectiveness of differing physiotherapy management strategies to reduce pain intensity of children with hypermobility disorders in 2003 when a visiting physician from the UK questioned the way in which I prescribed exercises
to affected children. The timing was right; ready to take on a new challenge, my ﬁrst research study, a randomised controlled trial (Pacey et al 2013), was underway.
The numbers of children with joint hypermobility coming to our clinic began to grow, and the question was raised as to who we needed to be providing services to, regardless of the interventions provided. Some kids seemed to ‘grow out’ of their hypermobility and get better, while others did not change, and then some became increasingly symptomatic. Hence, another study began: a ﬁve-year longitudinal study of children with generalised joint hypermobility. The baseline data summarised their complaints (Pacey et al 2015) and demonstrated that symptoms and objective assessments were able to identify ﬁve different subtypes of the condition (Pacey et al 2015). Analysis of the data at the three-year follow-up was able to start to answer whether children with higher pain, worse fatigue, more multi-systemic complaints and poor postural control were more likely to have greater functional impairment three years later (Scheper et al 2017). This made sense, and we could start to identify who we thought would beneﬁt the most from treatment.
The research being undertaken here in Sydney was part of a growing body of international evidence starting to unravel how joint hypermobility disorders, multi- systemic complaints and functional difﬁculties were, and in some cases actually weren’t, inter-related. Since 2016, I have been lucky enough to be engaged in the Ehlers-Danlos Society international consortium physiotherapy working group (Engelbert 2017), providing me with the opportunity to learn from and collaborate with clinical and research-focused physiotherapists from around the world who have been leading these new areas of research. More recently, I have been engaged in the paediatric and hypermobility working groups of this consortium, working in large multidisciplinary teams, to try and really understand how hypermobility-related disorders present and change in children. Previously, diagnosis and prognosis was all based on adult presentations.
My keynote presentation will summarise the recent research advances in this area from both our team and international experts, and hopefully will help to ‘tighten up’ attendees’ understanding of this evolving area.
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Verity Pacey, APAM, is an associate professor and head of the department of health professions within the Faculty of Medicine and Health Sciences at Macquarie University.
Q&A: During his conference presentation, Ray Russo will expand on the use of robotic technology in rehabilitation.
What projects are you working on (or have worked on) to improve the level of paediatric physiotherapy care?
Currently we are undertaking research and limited clinical application using a robotic gait orthosis known as the Lokomat. This is an exciting new technology, given that robotic technology is able to deliver a very high dose of therapy compared to land-based physiotherapy, but has strengths and limitations that we are just starting to characterise. As an example, the tactile, visual and auditory feedback that the robotic technology can give to participants can greatly assist in gait retraining, a feature that cannot be obtained with land-based therapy. Motivation is also a key clinical ﬁnding so far.
The interactive games incorporated into the robotic technologies maximise children’s efforts as they try to beat their ‘high scores’ and engage in the games. However, we know that the participant is fully supported in the robotic orthosis, so cannot work on some aspects of stability in gait, and lacks variability of movement. To help decide where this technology ﬁts in the rehabilitation process, we are undertaking several research projects. This includes projects in children and adolescents with acquired brain injury, cerebral palsy and certain cancers affecting the limbs and general health. This research has required the expertise of physiotherapists who not only run the Lokomat machine, but carry out the appropriate assessments to be able to determine the role of this technology in future care.
Can you tell us a bit about what you will be addressing in your presentation at the TRANSFORM Conference in October?
I would like to expand upon the use of robotic technology in rehabilitation, speciﬁcally focusing on a robotic gait orthosis (the Lokomat), and the Armeo upper limb robotic orthosis to improve functional outcome. I would like to discuss the role of robotics and the potential impact this modality of therapy can offer. I hope to make it clear that robotic technology will not replace conventional therapy, but could act as a very powerful complement to the evidence-based therapies that are currently being provided for children and adolescents with signiﬁcant disabilities.
What do you hope attendees of your presentation will come away with?
I hope that, regardless of their pre-conceived ideas of robotics, the audience will learn about the potential role of robotic technology in assisting children and adolescents with signiﬁcant disability make improvements in functional outcome. I feel an appreciation of where these technologies can complement evidence-based treatments would be of great value to them and to the children and adolescents that they manage.
Dr Ray Russo is an associate professor, faculty of health sciences at Flinders University School of Medicine. He is also head of research, paediatric rehabilitation department at the Women’s and Children’s Hospital in Adelaide.
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