Joining Jack is pleased to have donated £10,000 towards a Duchenne UK grant of £37,808 to Dr Anna Mayhew’s Neuromuscular Physiotherapy Team. The team are part of the John Walton Muscular Dystrophy Research Centre (a collaboration between Newcastle Hospitals NHS Foundation Trust and Newcastle University).
Children with Duchenne muscular dystrophy (DMD) often wear splints called ankle foot orthosis (AFOs). Splints, used in conjunctions with stretching, help them to keep the range of movement in their ankles for as long as possible.
When muscles around the joint shorten and become fixed this is known as ankle contractures. Contractures are common in patients with DMD and can often develop in boys as young as 4 or 5 years of age, so it is important we find the best treatments.
The grant will support a pilot study to compare Ankle Foot Orthosis (AFOs) and Contracture Control Devices (CCDs) for managing ankle movement and delaying ankle contractures in ambulant boys with DMD. The study is also designed to compare boys’ experience of using these two different devices, as some boys find them uncomfortable.
The two types of splints to be tested in this study are shown here:
CCDs are dynamic, hinged splints, and have proven to be an effective alternative to static night-time AFOs in other conditions when traditional physiotherapy has been unsuccessful in contracture management. However, local services are often reluctant to fund them, because of a lack of evidence and higher cost.
The £37,808 grant will allow the Newcastle Neuromuscular Physiotherapy Team to start to develop an evidence base to demonstrate the performance of each splint and will help to understand how many boys would be needed in order to get a really meaningful answer in a future study. Such a study would guide clinical decisions regarding the best orthotics for patients with DMD.
Dr Anna Mayhew, Consultant Research Physiotherapist at the John Walton Muscular Dystrophy Research Centre said:
“As a specialist centre we see a lot of DMD patients and would like to provide more evidence based guidance to families and physiotherapists on an optimum orthotic regime for managing ankle contractures. We are aware that other methods exist to manage contractures and orthotics do not negate the need for a daily stretching programme. Dionne Moat, Senior Clinical specialist will be leading on this project along with the physiotherapy team in Newcastle.”
Sara Smedley, mum to Oscar, who has DMD, and Duchenne UK Patient Advisory Board member, said:
“We raised the possibility of CCDs for Oscar with our neuromuscular team back in September 2019, having noticed his ankle range deteriorate quite rapidly, despite consistent use of AFOs. Although our neuromuscular physio thinks CCDs might help Oscar, we have so far not been able to get them for him.
The difficulty is that although some centres use them as part of their standard care and there is anecdotal evidence of the value of CCDs, there is currently no trial based evidence that exists which supports them as a treatment for Duchenne.
This study is a hugely important and worthwhile piece of work which could enable Oscar to have access to the best treatment to help maintain his ankle range and, in turn, prolong the time he is able to walk. ”
For more information about stretching and orthotics, please visit the Physiotherapy Advice – Muscle and Stretches section of our website (https://www.duchenneuk.org/physiotherapy-advice-muscles-and-stretches).
Also supporting this project are Team Felix, Smile With Shiv, Team Oscar and Henry’s Hurdles.