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Investigating How Spina Bifida Limits Activity

Walker spina bifida story

Not long ago, spina bifida carried a grim prognosis: most patients didn’t survive past their twenties. Now almost all of them will live far into adulthood, thanks to tremendous advances in care. While Dr. William Walker marvels at this progress, he also knows it brings humbling new challenges and responsibilities.

“We’ve figured out the nuts and bolts of keeping these kids alive and relatively healthy,” says Walker, chief of the University of Washington’s Division of Developmental Medicine and principal investigator in the Center for Child Health, Behavior and Development. “Now we need to understand what kinds of lives they’re living and how we can make them better.”

Walker is launching a new study aimed at quantifying the physical activity levels of children with spina bifida, a birth defect that can severely limit coordination and walking ability. The study will also identify which real-world activities these children participate in. This could help researchers understand why obesity is a growing problem among patients with spina bifida, and may lead to new interventions that help these patients lead more active, healthier lives.

For the study, a pilot project funded through Seattle Children’s Academic Enrichment Fund, Walker’s team is recruiting 48 kids with spina bifida. The researchers will start by measuring how far each child travels during a six-minute walk test or wheelchair shuttle run. Each child will then wear an accelerometer – a watch-like device that keeps track of how far they walk or push their wheelchair – for a week.

This will let Walker and his co-investigators, Drs. Thomas McNalley and Kristie Bjornson, determine how a child’s capacity to be mobile affects their real-world participation in typical activities. Study participants and their parents will answer questionnaires about which activities the kids usually participate in, and which ones they do while wearing the accelerometers.

“We’ll use the data to figure out how these kids’ activity levels compare to kids who are typically developing,” Walker says.

This will help the researchers define reasonable expectations for how active kids with spina bifida can be. Walker suspects that some patients might be very sedentary even though they can walk fairly well or push their wheelchairs long distances. He hopes to eventually develop interventions that improve these children’s physical activity levels, reducing their risk of becoming obese and improving their overall health.

“It might be as easy as telling parents which activities these kids can do instead of focusing on the ones they can’t,” Walker says. “That would be very refreshing to families, and could really empower the kids to do new things.”