Annihilating zombies and staying active: Research validates the use of gaming to measure upper extremity movement in young muscular dystrophy patients
Boys with Duchenne muscular dystrophy are generally wheelchair bound, but they love video games as much as the next young man. Researchers from Nationwide Children’s Hospital in Columbus, Ohio are finding ways to integrate gaming into their diagnosis and treatment of Duchenne patients.
Duchenne Muscular Dystrophy is a type of muscular dystrophy that is most common in children, specifically young boys. Duchenne affects 1 in 3,600 male infants, according to the National Institutes of Health.
An inheritable disease, boys with Duchenne often appear healthy at birth, but symptoms such as fatigue, intellectual disabilities, and muscle weakness tend to appear before age 6.
Children with Duchenne become weaker over time, slowly becoming unable to feed themselves, move normally and do various other tasks. Children are generally wheelchair-bound by the age of 12, and their severe muscle weakness eventually inhibits breathing and cardiovascular function. Duchenne patients typically die by age 25 due to lung complications.
Treatment for Duchenne generally involves quality of life measures, which may include proton pump inhibitors for children with gastroesophegael reflux, orthopedic appliances to increase mobility, assisted ventilation, and physical and speech therapy.
In a recent study published online in Muscle and Nerve, researchers found that scores in the game were highly correlated with parent reports of daily activities, mobility and social and cognitive skills. Currently, patients with diseases like muscular dystrophy who have lost mobility and use wheelchairs are excluded from clinical trials because there is not an easy, affordable or comprehensive way to measure their muscular function.
The Food and Drug Administration currently requires that study participants be able to walk for six minutes. The researchers hope the video game, designed with input from their patients, will demonstrate to the Food and Drug Administration that repeating the game with a patient accurately yields the same results, and results will change according to the progress of the patient.
Researchers at Nationwide Children's Hospital have developed a way to measure upper extremity movement in patients with muscular dystrophy using interactive video game technology. Their hope is to expand inclusion criteria for clinical trials to incorporate patients using wheelchairs.
"We were thrilled with the results," says Linda Lowes, clinical therapies research coordinator for the neuromuscular program at Nationwide Children's. "It's very reliable day to day because it's just fun. The scores are related to function, and really reflect what the boys could do in their life."
Ability Captured Through Interactive Video Evaluation, or ACTIVE-seated technology, utilizes a Kinect gaming camera, found in Xbox consoles. With a patient-requested zombie theme, the game requires the boys to reach with their arms in various directions to push forward a force field. The Kinect camera and ACTIVE-seated software measures how far and how long the boys reach. Measuring change over time is a primary goal.
"The game allows them to disintegrate aliens, which they love," says Lindsay Alfano, a physical therapist at Nationwide Children's. "In clinical trials we need to see that they're getting better with all of their activities. They have to spend hours with us doing nothing that's easy, only hard things. Looking at their faces after they play this game where they get to just play and be kids is a lot of fun to see."
Alfano and Lowes both speak to the importance of motivation when it comes to the success of the game's results. If a patient is not motivated to do something day after day, their performance will be different, making the assessment tool useless because it would not be measuring true function. Finding what is motivating yields the best outcome measure.
"We developed this game because there was not an accepted outcome measure for boys with muscular dystrophy who couldn't walk. So we needed an outcome measure that would be reliable, valid, and also give discrete quantitative measurements so they could measure small change or big change over time," says Lowes.