Children with autism nationwide may benefit from a new telehealth intervention developed by researchers at Oregon Health & Science University and partnering institutions.
The five-year, $4 million award from the National Institutes of Health will evaluate the effectiveness of a self-directed approach relying on telehealth. The research team aims to determine what level of support helps different families achieve the best health outcomes.
Clear evidence shows that early intervention benefits autistic children's short- and long-term development. However, the healthcare system has become overwhelmed with the rising prevalence of autism, and as a result, many children with autism cannot access timely diagnostic and intervention services, says co-principal investigator Katharine Zuckerman, M.D., M.P.H., professor of pediatrics in the OHSU School of Medicine.
"We're facing severe resource scarcity for autism — there aren't enough therapists and services for everyone who needs them, so many families may have to wait months or even years to access autism services," Zuckerman said.
"We don't want families to feel like there's nothing they can do in the interim, especially when their child is young and undergoing critical development. This intervention was designed to support families while they're in that waiting period."
Self-directed telehealth interventions — meaning online programs that can be completed on a phone, computer or tablet without a clinician present — provide parents with evidence-based strategies that they can implement immediately at home with their children, without having to navigate barriers like long waitlists and high cost of care.
However, little is known about parent engagement with these types of programs, or their impact on children's health outcomes. This research aims to evaluate the approach and identify which families can benefit from low- versus higher-support interventions.
"First we'd like to figure out what is the best basic intervention for families, and second, how we can customize the intervention so that parents who need more support are able to get that," Zuckerman said. "And ultimately, we hope to understand if that additional support makes a difference for health outcomes."
Flexible, accessible
The new grant will support a randomized trial to evaluate an adaptive, parent-led telehealth program that teaches basic principles of autism intervention with varied levels and types of support, developed by Zuckerman, co-principal investigator Yael Dai, Ph.D., of Florida International University, and co-investigator Deborah Fein, Ph.D., of University of Connecticut.
The intervention, designed for children ages 18 months to 5 years old, includes 12 unique modules to be completed monthly, available in both English and Spanish.
A total of 340 sets of parents and children will be initially randomized to either a self-directed intervention or one with automated support, such as text message or email reminders to complete the modules. Parents' engagement with and comprehension of intervention content will be monitored for one month.
At that point, parents with low engagement — defined as those who either did not use the intervention or did not demonstrate learning of key concepts — will be reassigned to either an individual or group clinical support add-on, with a goal of increasing engagement with the intervention. Multi-method assessments over time will then be used to evaluate implementation and assess child outcomes, including key developmental areas that are impacted by autism.
Researchers hope the trial will generate the evidence necessary to implement telehealth options more broadly and increase the capacity of the health system to offer tailored, cost-effective interventions to young children with autism and their families.
Zuckerman says web-based autism interventions hold promise for everyone but may be especially beneficial for certain populations that face barriers to care, such as Spanish-speaking families who may not have access to a Spanish-speaking autism therapist, or rural families who may live hours away from autism treatment.
"Our goal is to make this freely and publicly available, so we can help families everywhere," Zuckerman said. "It is designed to be flexible and adaptive, so we can deliver the right therapies when and where families need it."
This research is supported by the National Institute of Mental Health of the National Institutes of Health under grant number 1R01MH144636-01. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
