SCCAP/APA Convention/2018/The Use of Telehealth Technology to Improve Research in Neurodevelopmental & Neurogenetic Disorders

This symposium, titled, "The Use of Telehealth Technology to Improve Research in Neurodevelopmental & Neurogenetic Disorders" presents work from three groups currently leveraging telehealth technologies in their research programs on children with neurogenetic and neurodevelopmental disorders, including autism, Fragile X, and Down Syndrome. Across these three presentations, several common themes are highlighted, including the potential for telehealth to: 1) Increase the participation of underrepresented children and families from diverse ethnic and cultural groups and geographic areas into university-based research, 2)Expand the scope and sample size of research focusing on low-incidence clinical populations, including repeated assessments 3) Increase access to interventions for families with limited options via traditional clinical approaches. Limitations and complications arising from the use of these distance technologies are also discussed, along with methods for meeting these challenges. Together, these talk provide a roadmap for future research and clinical applications of telehealth technology to meet the needs of underserved children with neurodevelopmental and neurogenetic disorders.

Presenters and abstracts

Bridgette Tonnsen, PhD, "Telehealth Assessment of Autism Emergence in Infants with Neurogenetic Syndromes"

Despite affecting 1 in 68 children, the mechanisms and early course of autism spectrum disorder (ASD) are largely unknown, delaying initiation of interventions known to enhance behavioral and neural development. Studying ASD in high-risk neurogenetic syndromes informs: (1) the generalizability of behavioral ASD 􀂳red flags􀂴􀀃to diverse populations, as most current research focuses on the minority of children with ASD who have a sibling already diagnosed with ASD 􀀋􀂳infant siblings􀂴􀀌􀀏􀀃and (2) genetic and biological pathways subserving ASD features, facilitating mechanistically-sensitive treatments. However, syndromic ASD studies are rarely attempted in infants due to the high costs, travel demands, and logistical challenges of assessing low-incidence groups. Furthermore, mainstream telehealth technology is not compatible with experimental, laboratory-based methods (e.g. behavioral tasks, psychophysiology) sensitive to ASD risk. This presentation will describe our efforts to circumvent these challenges through the Purdue Early Phenotype Study (PEPS), a series of remotely-administered, longitudinal studies of emergent ASD risk factors in infants with neurogenetic syndromes. Study 1 includes 141 infants and toddlers with Angelman syndrome (n=25), Prader Willi syndrome (n=27), Williams syndrome (n=32) and nonsyndromic controls (n=57) participating in an ongoing web- and phone-based study of ASD risk in infants (303 observations to date). Study 2 includes 15 infants and toddlers with Down syndrome and 15 nonsyndromic controls participating in a remote experimental protocol that integrates behavioral (e.g. eye movements, vocal recording) and biological (e.g. heart activity) metrics to assess prodromal ASD features. We will discuss preliminary data, as well as broader methodological and conceptual issues related to telehealth-based assessment of ASD risk in low-incidence populations. This presentation will address a core thesis that telehealthbased approaches, despite their limitations and challenges, are laying the foundation for higherpowered, lower-cost, and wider-reaching studies of ASD emergence, providing a new frontier for improved conceptualization and monitoring of ASD-related features in infants.

Lauren Bullard, MS, "Using Telehealth to Deliver Parent-Implemented Language Interventions for Children with Fragile X"

Fragile X syndrome (FXS) is the leading inherited cause of intellectual disability. Children with FXS often have high rates of challenging behavior and impaired language abilities. Thus, this population needs individualized and intensive behavioral and medical interventions. Given the low prevalence of FXS and the lack of knowledge of the disorder among many professionals, however, these interventions are often difficult for families to access, especially outside of large urban centers. One such solution to providing access to optimal care is through the use of distance technology. In this presentation, we will focus on procedures we have developed and empirically tested for delivering parent-implemented language interventions into the home via distance. In our early studies, we began by using a synchronous telehealth application in which a clinician would communicate with a mother via video teleconferencing as she interacted with her child. In addition to the synchronous interactions, later studies incorporated an asynchronous component during which parents􀂶􀀃record videos of themselves interacting with their child and then submit the video via a secure cloud based storage platform for the clinician to review. In the latest iteration, we also include a study website that families and clinicians use for intervention related communication. To date, we have delivered intervention via distance to 48 children with FXS, ages 2 to 17 years. Of these participants, we have a compliance rate of 99.55% for our studies involving the intervention alone and 96.83% when incorporated within a clinical trial. After each study, we asked participating families to report on their ability to use the technology provided and their overall satisfaction with the intervention. Overall, parents strongly agreed that they were able to use the technology and were satisfied with the intervention. Additionally, we will address the feasibility of collecting multimodal assessment data on treatment efficacy via distance.

Meagan R Tabott, PhD, "Using Telehealth Technology to Reach Toddlers at-Risk for ASD in Diverse, Low-Resource Settings"

Despite the efficacy of early behavioral treatment for young children with autism spectrum disorders (ASD􀂶s), there remain significant disparities in diagnosis and initiation of services for young children in diverse and low-resource communities. Children in these settings typically receive low intensity (1-2 hours per week) services through state Birth to Three Early Intervention programs, provided in the home by EI professionals with often limited background or training in ASD and evidence-based treatments for ASD. Therefore, some of the primary challenges to the field in implementation science include the development of intervention programs that are both evidence-based and meet the needs of parents and professionals in existing service systems, and demonstrating the acceptability, feasibility, and efficacy of such programs in their final community-implemented formats. These challenges are amplified in rural, low-resource settings, where providers and families may not have access, geographically, professionally, or financially, to empirically-validated practices. In this talk, we highlight the ways that we are harnessing telehealth technology to address some of these issues in our current research program, which utilizes distance methods to 1) recruit and enroll 50 young children with social communication challenges and their early intervention providers from diverse, low-resource communities throughout the US into university-based research, 2) train providers in an ASD-specific parent-mediated early intervention model adapted for low-intensity community settings, 3) train assessors to evaluate child behavior and development, and 4) disseminate evidence-based treatment practices directly to families. We will review the telehealth provider recruitment and training procedures and measures of provider fidelity to treatment practices, measures of provider acceptability, feasibility, and sustainability, as well as distance methods for evaluating effects of this treatment on child progress. The results of this project will provide a roadmap for future translational research utilizing telehealth technology to meet the needs of underserved children with ASD.