A telediagnostic service in a rural community to triage autism spectrum disorder (ASD) assessments in young children increased the number of evaluations, reduced family wait times, and reduced family referrals to a metropolitan tertiary care diagnostic center. The study by VKC TRIAD authors was published online in August in the journal Autism.
“With this data, we feel confident that our TRIAD telemedicine work in rural West Tennessee is beneficial to our metropolitan service system, the Tennessee Early Intervention System (TEIS), and most important, to families,” said Pablo Juárez, M.Ed., BCBA, director of TRIAD (Treatment and Research Institute for Autism Spectrum Disorders). “Additionally, the model could be replicated in other rural areas in Tennessee and other states.”
The continuing increase in the prevalence of ASD creates a corresponding growth in the need for timely, accessible diagnostic consultation. Because diagnostic resources tend to be clustered in large metropolitan areas, high demand leads to long wait times. Families living in rural areas face geographic and often economic barriers in accessing diagnostic services and, in turn, young children with ASD are delayed in qualifying for and receiving early intervention services.
To address these systemic issues, TRIAD partnered with TEIS in the Tennessee Department of Education to develop and implement an ASD diagnostic service, using telemedicine, in a rural area.
“In an earlier study, we had evidence that the TRIAD telemedicine model allowed us to diagnose children accurately, and that families were satisfied with the service,” said Alacia Stainbrook, Ph.D., TRIAD’s director of Early Learning, and assistant in Vanderbilt Pediatrics. “In this study, we wanted to see what effect the telemedicine model had on the larger service system, since that is important in determining whether the model can be generalized, sustained, and replicated.”
The study’s aim was to measure whether a telemedicine-based diagnostic consultation service (“telemedicine service”) had an impact on systems of care by affecting referrals to a metropolitan tertiary care diagnostic center (“tertiary center”) for families served by a rural medical facility.
To assess the impact, the research team first looked at the referrals from the rural medical facility before and after the telemedicine service was established. They then compared the referrals from the rural medical facility offering the telemedicine service to a comparable rural region without a telemedicine service.
The rural medical facility with the telemedicine service was approximately 130 miles from the metropolitan tertiary center. Families were recruited from 23 counties West of the tertiary’s center location.
“We selected this region because the Tennessee Department of Education had identified the area as ‘under-resourced,’ and also because of the number of referrals to the tertiary center,” Stainbrook said. “Our comparison was a another rural area of the state, also ‘under-resourced,’ that was similar in terms of distance to the tertiary center, record of referrals, and demographic characteristics.”
Since the features of ASD in young children vary, as does the expertise of early intervention providers, TRIAD developed a “decision tree” to determine when the telediagnostic model would be appropriate for families vs. referral to the tertiary center. Referring TEIS service coordinators used this decision process.
Referral to the tertiary center was recommended only for complex circumstances, e.g., complicating medical conditions, psychosocial factors such as history of abuse, significant sensory impairment, or limited English proficiency.
The in-person assessor reviewed all referrals for appropriateness. The TRIAD team met regularly with a TEIS team to evaluate on an ongoing basis how the decision-making process was working and to assure that the telemedicine service was meeting the needs of rural families.
At the rural medical facility, 60-minute visits were held in an exam room that had HIPPA-compliant technology (patient privacy) for the telemedicine consultation. On-site staff who conducted the assessments had college degrees in child development, had experience working with families in homes, and were trained to administer the Screening Tool for Autism in Toddlers and Young Children (STAT, Stone et al., 2000*). The remote assessor, a licensed clinical psychologist with extensive experience in ASD, observed and interviewed caregivers. At the end of the appointment, the remote assessor discussed diagnostic impressions with the family, which included an ASD diagnosis, ruling out ASD, or recommending additional evaluation.
Providing the telediagnostic model in the rural medical facility resulted in a large increase in regional referrals for evaluations, compared with the number of referrals in the 4 preceding years.
“Not only did the number of referrals increase, but the model also allowed us to see families more quickly compared to wait times in the tertiary center,” Stainbrook said. “The wait time for a comprehensive evaluation in the tertiary center averaged 15 months, contrasted with an average wait time of 11 to 15 weeks for the telemedicine service.”
Another important measure was “show rates,” or families keeping appointments. Show rates for the tertiary center averaged 85% from 2012 to 2016, while show rates for the telemedicine service were 100% in 2016 and 94.64% in 2017.
The research team compared the number of referrals from the rural region with the telemedicine service to a rural area with similar characteristics where a telemedicine service was not available and referrals were made to the tertiary center. In the rural region with the telemedicine service, referrals to the tertiary center decreased significantly. In the comparable rural region without the telemedicine service, referrals to the tertiary center increased significantly.
“Our findings strongly suggest that instituting a telemedicine diagnostic consultation in partnership with the early intervention system positively impacts the service system as a whole, as well as making it easier for families in rural areas to schedule and keep diagnostic screening appointments,” said Stainbrook. “Providing diagnostic and early intervention resources in rural areas is a challenge not just in Tennessee but nationwide, so these results show promise in overcoming barriers, especially as telemedicine becomes more commonplace.”
*Stone, W. L., Coonrod, E. E., & Ousley, O. Y. (2000). Brief report: Screening Tool for Autism in Two-Year-Olds (STAT): Development and preliminary data. Journal of Autism and Developmental Disorders, 30(6), 607-612.
Stainbook, J. A., Weitlauf, A. S., Juàrez, A. P., Taylor, J. L., Hine, J., Broderick, N., Nicholson, A., & Warren, Z. (2018). Measuring the service system impact of a novel telediagnostic service program for young children with autism spectrum disorder. Autism. 2018 Aug 16 [Epub ahead of print]
Jan Rosemergy is VKC director of Communication and Dissemination.