UA professor’s study challenges American standard of care for children with cerebral palsy

A professor emeritus at the University of Arizona is hoping to improve the lives of young children with spastic cerebral palsy through a National Institutes of Health clinical trial, inspired by Chinese medical practices.

About 20 years ago, Dr. Burris “Duke” Duncan was in the Anhui province of China, west of Shanghai, in a large children’s hospital.

Duncan, the only Westerner there, said he was surprised to see the Chinese medical professionals smiling — “almost laughing” — when he described how American doctors treat children with cerebral palsy.

In Arizona, he told them, there is a program called Child Find, which seeks out children with developmental problems and refers them to the state Division of Developmental Disabilities. Duncan said the process to address cases can be slow, with files often sitting “on someone’s desk for a while.”

“Someone then finds it and sends a person out to the home to evaluate the child,” Duncan said. “If it looks like a motor problem, a physical therapist would go out and evaluate the child, and if they find it to be cerebral palsy, they will set up a series of therapies.”

That series of therapies is usually only one occupational therapy or physical therapy session every other week, he said.

“With this type of therapy, I didn’t see much change,” Duncan said. “The kids were still getting their tendon releases; they were still having braces; they just weren’t getting much better.”

Things are different in China, though. The doctors in Anhui told Duncan that Chinese studies showed their practices were more effective than the American model; Duncan had not seen the studies because they were only available in Chinese and not confirmed by Western research.

“They marched me down this huge hallway in this hospital, and out of the room comes this child — must have been 4 or 5 years of age,” Duncan recalled. “He was pushing a walker, kind of bent over a bit, flexed knees; looked up at me, big smile on his face, but he was able to walk with this walker.”

When Duncan asked the doctors what they did differently, they replied, “herbs and acupuncture,” Duncan said. He needed to know more.

“I talked with the president of the Chinese Pediatric Society, and she invited me to Beijing Children’s Hospital,” he said. “I went there and found out more than what I was told; that their standard of care… is: as soon as a diagnosis is made, the child and the mother are admitted to the hospital.”

Five days a week for 12 weeks, the child receives physical therapy, occupational therapy, hydrotherapy, herbal baths, deep massage and acupuncture. Duncan, intrigued, obtained a research grant to see which of these treatments made the most difference.

“We evaluated it, and it turned out — from our statistics, at least — that acupuncture wasn’t that effective,” Duncan said. “However, I looked at it again and said, ‘Maybe it’s not the acupuncture; maybe it’s the intensity.’”

Taking a fresh look at the data, Duncan and his team discovered that the intensity of the treatment, particularly the physical and occupational therapy, made the biggest difference between the two standards of care.

Duncan is now in the fifth year of his NIH-funded clinical study focused on intensity, with another year and a half to go. Duncan said he planned to enroll 110 children between the ages of 12 and 36 months who had been diagnosed with spastic cerebral palsy.

The children participate for 48 weeks: the first group gets 12 weeks of intensive therapy, then 36 weeks of once-a-week treatment; the other group gets the same treatments but in reverse.

Duncan hypothesized that more intensive therapy is better than the existing standard of care, but it is still too early to speculate about the results of the study.

He said he was sure he would not find enough children for the study at Tucson Medical Center — his home base — so he reached out to Phoenix Children’s Hospital, who agreed to help. But PCH also fell short, so Duncan reached out to United Cerebral Palsy of Central Arizona, which ended up being the fourth location for his study.

UCP is an international nonprofit agency that uses a network of affiliates in different cities to deliver medical services, research and advocacy for children with developmental disabilities including cerebral palsy.

Duncan works closely with Valerie Pieraccini, occupational therapist and director of the Early Learning Center and clinic and home-based therapy programs at UCP of Central Arizona.

“Our commitment as an agency is to look for best practices, not only in the way that we provide services to children, but to participate also with others who are looking for best practices and high standards for care for children,” Pieraccini said.

Duncan said UCP plays a critical role in the advancement of treatments for disabled children, because the organization offers a model for others, and the central Arizona affiliate in particular influences UCP best practices in other cities.

Should his hypothesis ring true, Duncan said he hopes UCP will help spread the word.

“The likelihood of this getting propagated quicker is dependent upon what UCP can do, and I’m grateful for them to be a part of [the study],” he said, adding that if he were to do the study again he would have called UCP much sooner.

“Had it [not] been for UCP stepping up and saying, ‘count us in,’ I don’t know what would have happened,” Duncan said. “We may have had to abandon the whole thing.”

Pieraccini said a focal point of the study is the concept of neuroplasticity — known colloquially as brain plasticity — which says the brain is able to “restructure itself, rewire itself” before the age of three.

“That is also actually part of the premise of this study… that they get those really intense services while the brain can rewire itself,” she said. “You may have a child that will, later in life, need half the services that they would have if they just get the standard of care.”

Ultimately, Duncan and Pieraccini hope to see intensive therapy allow patients with cerebral palsy to move and function better.

“If they are able to move better or easier, then they’re able to, maybe, feed themselves, dress themselves, be able to walk, those types of things,” Pieraccini said. “Spastic CP is pretty significant. It’s very impactful on a person’s ability.”

The more research that shows the value of intensive therapy, the sooner it will become common practice, Duncan said.

“This is just one study, and it takes a long time for people to change,” he said. “It takes a long time for therapists to change. It takes even longer for insurance companies to change. And so, it’s going to be an uphill battle, but you’ve gotta start somewhere. A thousand-mile trip started with one step, and you have to take that step.”