The project was supported by Save Our Sons Duchenne Foundation, Princess Margaret Hospital for Children, Lady Cilento Children’s Hospital, Women’s and Children’s Hospital, Royal Children’s Hospital, Perth Children’s Hospital, Curtin University, and Westmead Children’s Hospital, The University of Sydney, Sydney, Australia; Centre for Community-Driven Research, Perth, Australia; Sydney Children’s Hospital, Randwick, Australia; Murdoch Children’s Research Institute, Melbourne, Australia, MGH Institute of Health Professions, Boston, USA , Cincinnati Children’s Hospital, Cincinnati (USA) Institute of Genetic Medicine, International Centre for Life and the John Walton Muscular Dystrophy Research Centre (UK)
The research initially investigated how a powered wheelchair standing device can support quality of life in boys with DMD who have lost the ability to walk. The second phase gathered an international multidisciplinary panel of clinicians and users (young people with DMD) along with their parents to develop guidelines for prescribing powered standing wheelchairs for young people with DMD.
Duchenne muscular dystrophy (DMD) is characterised by progressive muscle wasting and weakness due to breakdown of muscle fibres. It mainly affects boys (99% of children diagnosed with DMD), and as they grow older their motor skills such as standing and walking become more difficult which often leads to reliance on a wheelchair for their mobility and independence.
The research found that quality of life for boys living with Duchenne muscular dystrophy can be improved using powered wheelchairs that enable them to stand as it can aid in pain management, relieve discomfort and improve mobility and independence, offer opportunities for greater participation in different social situations and resulted in measurably better mental health.
The guidelines are already proving to be an important tool for Novita’s therapists and Assistive Technology specialists and are supporting families to justify prescription and funding at the optimum time, before they miss the one-time window for increased independence and improved clinical outcomes. Experience from this research also led to thinking about other client groups that might benefit from the technology (DMD research program).
New clinical guidelines for prescription of powered wheelchair standing device for clients with Duchene Muscular Dystrophy to ensure that clients can have the device prescribed and funded before it’s too late (Powered wheelchair standing device guidelines for DMD Delphi study).
Families of young people with Duchene Muscular Dystrophy know the importance of keeping their children on their feet for as long as possible, but the boys hate standing frames, and they are a huge burden on carers. Participating in this research raised awareness of the potential of new technology and the life-changing impacts it can have when funded and prescribed at just the right time (DMD research program.
Four Novita physiotherapists were among the first in Australia to gain experience with the powered wheelchair standing device for DMD clients and to partner with families to understand how to optimise the benefits of this new technology. The project led to immediate knowledge translation and benefits for Novita, long before the research was complete. All staff were excited to be involved in the research and felt valued that their expertise was recognised.
More information can be found here - Research project finds social and mental health benefits for boys using powered standing wheelchairs | Novita