Child care

Standing app supports kids with rare disorder

Health experts have developed an iPhone application to encourage children with a rare neuromuscular disorder to stand more often.

Telethon Kids Institute, Save Our Sons Duchenne Foundation and Curve Tomorrow designed the StandApp for children with duchenne muscular dystrophy, who owned powered standing wheelchair devices.

Description of the StandApp in the App Store. Source: The App Store.

A study titled Powered Standing Wheelchairs Promote Independence, Health and Community Involvement in Adolescents with Duchenne Muscular Dystrophy by the Telethon Kids Institute was published in the Neuromuscular Disorders journal in February.

It was reported boys with DMD experienced health benefits and better quality of life when they used motorised wheelchairs which allowed standing in the wheelchair structure by controlling a joystick.

Telethon Kids Institute head of child disability health and wellbeing Jenny Downs said the results motivated the creation of a supportive app to remind youths to stand in their wheelchair.

“[The StandApp] really fits with the skills that these boys have when they’re losing mobility,” she said.

Professor Downs has worked at the Telethon Kids Institute since 2005. Source: Telethon Kids.

Professor Downs said DMD was a disease caused by a mutation in the dystrophin gene on the X chromosome, which was important in maintaining muscle function.

She said boys were diagnosed more often as they were born with only one X chromosome, and the condition could result in a shorter life expectancy.

“With improved care and new technologies, many individuals are living into their 30s and some in their 40s,” she said.

Save Our Sons clinical care and advocacy executive officer Klair Bayley has a 17 year-old son living with Duchenne, who was one of the first to have a standing wheelchair in Australia.

Ms Bayley said the foundation sought collaboration with Telethon Kids Institute about six years ago and funded research on the benefits of standing for boys with DMD.

“We wanted to gather the research evidence through Telethon Kids to support the use of the standing wheelchairs in Duchenne and … promote the standing in the boys,” she said.

“We have now extended our research relationship with Telethon Kids and Curve Tomorrow to develop the StandApp.”

Ms Bayley’s son Logan Bayley on a Powered Standing Wheelchair Device. Photo: Klair Bayley

Curve Tomorrow director Mohinder Jaimangal said the app not only reminded children with Duchenne to stand twice a day, but also recorded their progress and emotions.

“The app not only [notifies] them of what they need to do, but also records their progress of what they’re doing and how well they’re doing,” Mr Jaimangal said.

“Not only is it a physical aspect but also a mental aspect that we’re recording in the application.”

According to Curve Tomorrow head of product development WA Arthur Ong, the app also used gamification techniques to encourage children to be active.

“That [makes] it actually interesting for the kids as opposed to parents saying ‘can you stand up’,” Mr Ong said.

Arthur Ong and Mohinder Jaimangal from Curve Tomorrow. Photo: Tan Foo Xian.

Professor Downs said the release date of the app was not yet confirmed as it would be undergoing a six-week trial.

“I don’t want it to be tied to a time at this stage,” she said.

“This is a first and it will need careful evaluation.”

Ms Bayley said Save Our Sons invested about $150,000 in the standing wheelchair study, and $25,000 on the research and development of the app.

She said the app was limited to those with DMD who were part of the standing wheelchair trial at present.

Mr Jaimangal said an Android version of the StandApp may be released if the results of the trial were positive.

“I think the commercialisation aspect will look at releasing an Android version to [the] market as well,” he said.