Teddy Rosenbluth
SMDP Intern
A virtual therapy program developed by UCLA researchers may give patients access to early intervention treatments, helping bridge the healthcare gap between rural areas and cities.
The program allows parents to video call therapists to learn play-based treatment methods and then review home-recorded videos of their session with specialists. In conditions like autism, early intervention can dramatically alter the course of the disorder’s progression.
Shafali Jeste, the director of the Care and Research in Neurogenetics Clinic, developed this program after conducting a clinical trial on the importance of early intervention for autistic children. After a year of trying to recruit patients to this study, only three families had volunteered.
She realized for many parents, who already had to juggle taking care of a disabled child, trekking to the hospital for counseling once a week wasn’t feasible. Other parents, like Brandon Crawford, lived thousands of miles away from large hospitals that offered this type of early intervention.
“We’re in this place where we’re diagnosing earlier and earlier and recommending intervention but it’s hard for parents to access those, especially if they have to travel long distances,” Jeste said.
Jeste said she had met with many parents who knew their children had a genetic predisposition for autism and knew early treatments would help but just couldn’t travel to a major hospital for the time intensive treatments.
“That is very, very scary,” she said.
Crawford’s son, John, was diagnosed with tuberous sclerosis when he was a couple of months old. The rare genetic disorder can cause tumors to grow in various organs such as the heart, eyes, brain, kidney and skin. Children with this disorder are also at a high risk of developing autism.
He said he wanted to participate in UCLA’s earlier intervention studies, and had even flown to California for a couple of assessments, but couldn’t afford to travel for weekly appointments.
When UCLA doctors told him about the new virtual program, he immediately agreed. Within 6 months of rolling out this program the clinical trial had 30 patients and a growing waitlist.
Families from states across the country will participate in the federally-funded study for about 21 months and will only have to visit the hospital six times. The study will conclude in 2022.
Jeste said she hopes to make the treatment process even easier for patients by developing an app to use on their own devices, instead of lending patients tablets.
Crawford said he has already started seeing improvements in his son’s development.
“We got information which is hard to find with a rare diagnosis,” he said. “We got access to brilliant people who care about the disease and care about helping people who have it.”
He said there may have been some psychologists at a nearby hospital in Arkansas who could have helped his son, but early intervention specialists are hard to come by.
“I don’t want to disrespect Arkansas but I don’t think we would have had access to the caliber of people we were dealing with at UCLA,” he said.
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