Agile Shift to Telehealth Brings Silver Linings

When the COVID-19 pandemic disrupted clinical and research activities at the Duke Autism Clinic, the team transitioned quickly and adeptly to telehealth to ensure continuity of services and supports.

Regarded by many as a potential “silver lining” of the pandemic, telehealth has the potential to increase access to services and supports to rural, low-resource communities. A few significant barriers initially affected the telehealth transition, such as provider unfamiliarity with the platform and availability of diagnostic tools. For example, a widely used diagnostic autism assessment tool was found to be incompatible with remote delivery.

In response, clinicians and researchers worldwide came together to compile and disseminate trainings on telehealth adaptations to assessment and treatment approaches that could overcome implementation barriers. With strong university, departmental, and center leadership; a substantial technology infrastructure; and dedicated faculty, trainees, and staff, the Duke Center for Autism and Brain Development team adapted clinical and research programs to align with emerging best practices in telehealth.

Remote Delivery Keeps Clinical Services and Research on Track

Since the initial transition in March 2020, the Duke Autism Clinic has continued to offer diagnostic evaluations, medication management, family and individual therapy, and care coordination services via telehealth to hundreds of families. Now, after 18 months of doing so, the advantages of delivering clinical services remotely are becoming clearer. One size does not fit all, however. Those who need in-person services can access these supports in adherence with Duke University Health System COVID-19 safety precautions.

“As long as it is feasible to do so, we hope to continue to offer a telehealth option into the future,” said Jill Howard, Ph.D., director of early intervention services at the Duke Center for Autism. “It really is a ‘game-changer’ for many families who need more flexibility accessing interventions and treatment.”

“We had a great experience participating in the Duke A+ Study, and we are super grateful for everything that it has taught us about our son. It has really helped open doors for helping him be successful, especially with his communication skills and in interactions with our family. All of our visits were done through telehealth, which ended up being really helpful. We were in a more comfortable environment for my son and that allowed our practitioner to work with us in his typical, daily environment.” - Mother of a child on the autism spectrum

One of the center’s ongoing research studies, the National Institutes of Health (NIH) Autism Center of Excellence (ACE) study, is designed, in part, to examine the impact of Early Start Denver Model (ESDM)-informed caregiver coaching to support social skills in autistic children with attention deficit hyperactivity disorder (ADHD). Prior to the pandemic, all caregiver coaching sessions and assessments were conducted in-person at the center. During the temporary shutdown in thesummer of 2020, the ACE team adapted the coaching approach and assessments for remote ESDM homebased delivery. Coaching in the child’s natural environment, typically their home, is central to ESDM principles and can further enhance the impact of this coaching approach. Live coaching through online applications such as Zoom has allowed therapists to maintain the coaching session content and structure.

“We have traditionally measured behaviors in a standard lab environment. When the pandemic began, we worked creatively to adapt that task from the controlled environment of the lab to the unique environment of each participant’s home, keeping some things standard, while adjusting for individual family’s differences,” explained Maura SabatosDeVito, Ph.D., assistant professor in Psychiatry and Behavioral Sciences and an ACE study investigator. “We noticed that the telehealth platform provides families a bit of comfort, because the child and caregiver are interacting in the familiarity and comfort of their home environment. It allows for more natural interactions between the caregiver and child. Scheduling appointments is more flexible and easier for caregivers too. As researchers, we have been able to maintain the goal of both coaching and measuring behavior in a consistent environment, which is important for observing change.”

At the same time, center clinicians designed a parent coaching approach tailored to families without highspeed internet access and adapted the caregiverchild interaction task (a key outcome measure for the ACE study) for remote delivery. Doing so allowed researchers to leverage the telehealth delivery experience to explore how coaching in the child’s natural home environment affects the engagement and child support strategies caregivers put in place during joint activity routines.

Worldwide Impacts Force Creative Solutions to International Collaborations

During the pandemic, Duke Center for Autism faculty continued to support research and training activities in South Africa. In a study at the Centre for Autism Research in Africa at the University of Cape Town, prior to the pandemic limits, caregiver coaching that utilizes ESDM materials and an open-access, webbased tool was adapted for non-specialist delivery. Shifting the task of coaching to non-specialists is crucial in low-resource environments because of its potential to dramatically increase reach and access to services and supports to children who would otherwise do without assistance. As with the NIH ACE study, the team in South Africa transitioned all coaching and assessments to a telehealth platformduring the pandemic. This is particularly powerful in places such as sub-Saharan Africa, where the “digital divide” is stark. Few households own a computer, and even fewer have access to highspeed internet. However, many caregivers have smartphones and connect to the internet with prepaid mobile data. In response to the pandemic, the study team clinicians adapted coaching to leverage smartphone delivery with session materials shared via WhatsApp, a low-cost messaging software widely used in South Africa.

“The pandemic has forced us into action to create strategies that increase access,” said Duke Center for Autism child and adolescent psychiatrist Lauren Franz, M.B.Ch.B., M.P.H. “We cannot let resource availability and access disparities direct who receives services and supports, and who does not; who gets the chance to participate in research studies and novel treatments, and who does not. The pandemic has given us a remarkable opportunity to understand how telehealth can ‘fit’ diverse contexts. We can leverage low-cost apps to keep necessary supports in place and still ensure valid scientific results. These fresh ideas and new approaches can facilitate development of new strategies with broad global impact.”