Investigators: Cara Schofield, Graham Hall, Jenny Downs, Nita Vorster, Peter Jacoby,
Summary
We are investigating how wheelchairs with capacity to stand can support quality of life in boys with Duchenne muscular dystrophy who have lost the ability to walk. The standing wheelchair provides opportunity for the affected boy to continue to choose when to stand. Collecting this data is critical to understanding how this equipment is useful and will support decisions by the NDIS in funding the device.
Project description
When standing and walking become difficult, boys with Duchenne muscular dystrophy are provided with an electric wheelchair to maintain their functional mobility and allow opportunities for participation. Whilst most therapists recommend use of a standing frame, use can be limited by the burden of transfers from wheelchair to the standing frame as the children become heavier. Therefore, specific features of the standing frames likely have marked impacts on the acceptance of the technology and would influence their frequency and duration of use. There is also an extremely limited evidence base to support this use and the studies that are available have been conducted in individuals with spinal cord injury or cerebral palsy. Available studies include surveys with low response fractions or case studies.
Although a low level of evidence, available data suggests that there may be benefits for health in the areas of skin care, bowel and bladder health, improved energy levels and reduced fatigue as well as reduction in the magnitude of contractures. The new standing wheelchair has potential to overcome the barriers of handling and transfers and enable easier attainment of the standing position and any potential benefits.
This study will study the benefits and problems of using the standing wheelchair in boys with Duchenne muscular dystrophy who have difficulty standing and walking using a longitudinal study design. This study is also developing a position statement to guide clinical decision-making regarding eligibility for a powered standing wheelchair device. We are developing a phone application to support the boys to use the standing function on their wheelchair more regularly.
External collaborators
- Peter Rowe (Princess Margaret Hospital for Children)
- Anita Cairns (Lady Cilento Children's Hospital)
- Damian Clarke (Women and Children's Hospital (Adelaide))
- Monique Ryan (Royal Children's Hospital Melbourne)
- Aris Siafarikias (Perth Children's Hospital)
- Stephanie Parkinson (Curtin University of Technology)
- Kate Carroll (Royal Children's Hospital Melbourne)
- Kerry Evans (Novita)
- Helena Young (Westmead Children's Hospital)