Team members within the Vanderbilt Kennedy Center’s Treatment & Research Institute for Autism Spectrum Disorders (TRIAD) are piloting a project to see if embedding a trained behavioral health provider within the traditional primary care setting such as a pediatrician’s practice would improve the likelihood of earlier diagnosis for children who show signs of an autism spectrum disorder and would streamline the intervention process.
Currently, if parents are concerned that their child is displaying signs of an autism spectrum disorder (ASD), they need a referral from a pediatrician or primary care provider (PCP) in order to see a specialist trained in ASD diagnosis for a formal assessment. The patient is then added to a wait list for assessment at another medical clinic. Because of the one-to-one observation time required for a proper ASD assessment as well as the influx of assessment referrals in recent years, the wait time for a child to be seen by a trained behavioral health specialist can measure in months.
The long wait can be viewed as counterintuitive in a practice that promotes early ASD diagnosis and intervention for optimal results.
“The term ‘medical home’ means striving to provide families access to comprehensive and continuous health care through their primary care clinic, said Jeffrey Hine, Ph.D., assistant professor of Pediatrics and a TRIAD licensed psychologist. “This often includes a team-based or integrated approach. “This is especially important for children with ASD and their families due to their need for chronic management of complex medical, educational, and behavioral challenges over time. So primary care providers are increasingly asked to play critical roles in the lives of children with ASD and their families.
“Unfortunately, for a variety of reasons, large numbers of children are still not screened for ASD, wait times for appropriate diagnostic assessment are lengthy, and the average age of diagnosis in the U.S. is still after 4 years of age,” he continued. “Most parents of children with ASD report poor access to a medical home, delayed referrals for evaluations, and inadequate guidance regarding treatment options and community supports. Also, pediatric primary care clinicians report feeling ill-prepared to meet the needs of their patients with ASD and families.”
As a result, TRIAD researchers have begun a pilot study in which Hine splits time between two pediatrics primary care programs affiliated with Vanderbilt University Medical Center, and his services are incorporated during pediatricians’ office visits.
“I have been working closely with Zack Warren [VKC TRIAD executive director and associate professor of Pediatrics] and General Pediatrics faculty to test the impact of embedding a behavioral health provider within the primary care setting with an explicit focus on rapid ASD identification,” said Hine. “What we are finding is that embedding a behavioral health provider with specific skills and training related to ASD diagnostic consultation helps accurately and rapidly identify many cases of ASD and potentially represents a more realistic model for advancing ASD identification and treatment.”
“Embedded processes for effective triage and diagnosis of children at-risk for ASD within the medical home may be a viable mechanism for reducing age of detection and initiation of services,” added Warren, who also serves as director of Autism Research for Vanderbilt’s Department of Pediatrics as well as the VKC. “Providing medical residents with access and support of an ASD expert within their continuity clinics may prove to be a valuable mechanism for enhancing their training and future impact.”
During the pilot program, Hine, in his role as psychologist, worked in each clinic one day per week for explicit ASD diagnostic consultation and support clinics. Coordinators hope to increase that time in the future. These clinics were developed to provide efficient and early classification of children suspected of ASD.
“We started out where I was explicitly available for the purposes of providing follow-up to ASD-related concerns such as screening failures, diagnostic issues, or behavioral consultation, but we are beginning to be able to start seeing a wider range of presenting concerns including common problems faced during childhood–toilet training, sleep, tantrums–to more significant behavioral, emotional, or mood concerns across ages,” said Hine. “Nearly all behavioral health referrals were initiated by the PCP after concerns were documented during the child’s well-child check-up or outpatient sick visit. Specific to concerns for ASD, PCPs made referrals for children who had previously screened positive for ASD, or if specific concerns related to red flags for ASD were raised by a parent or observed during the medical appointment.”
During the appointments, many young children with and without ASD are accurately identified using a rapid diagnostic model including a standard ASD screener, a basic interactive measure, and simple diagnostic interviewing. Results from the program showed reduced wait times for ASD consultation that resulted in increased opportunities for families to access evaluation and treatment.
“The amount of time that families had to wait to receive ASD consultation through the embedded clinics is a dramatic improvement in comparison to current national and local averages of a 6- to 12-month wait times for ASD evaluations in specialty clinics. We were just over a month,” Hine said. “Results of the embedded services also resulted in an average age of diagnosis at 32 months, well below the average age of ASD diagnosis reported in a recent national sample, which is 50 months.
“Reduced waits and early identification increase families’ chances of accessing critical birth-to-age-3 early intervention services that can improve developmental functioning and quality of life and most often allow a smoother transition to Part B special education services if needed.”
With the success seen from the pilot program, Hine and the TRIAD team hope this is a positive first step to providing families efficient access to behavioral health and diagnostic consultation through their primary care.
“Our overarching goal is to streamline access to diagnostic and intervention services for families who have a developmental or behavioral concern for their child,” Hine said. “The integrated behavioral health model is on the rise as being the optimal method of providing these services to families, and while our project is currently focused on VUMC clinics and children with autism spectrum disorder, the benefits of integrated care in the medical home has wide-ranging effects, especially for traditionally underserved families like those in rural, low-resourced areas of the state. Integrating telehealth services for diagnostic consultation and behavioral follow-up further increases our ability to reach underserved families and get them connected to these critical services.”
Hine was recently tapped as one of three 2017-2019 Scholars of Vanderbilt University School of Medicine’s Katherine Dodd Faculty Scholars Program. The program helps faculty members develop and enhance their skills as clinicians and educators and provides an opportunity to conduct scholarly research, to conduct and to evaluate an educational project, or to implement and to evaluate a clinical or quality improvement project in an area of interest to their clinical area or to medical education.
“The Dodd Scholars program will allow me to build upon our primary care initiatives by expanding screening, diagnostic, and follow-up services for children and families with concerns for ASD,” Hine said. “In addition, this project also will look to create a sustainable model of collaborative clinical education targeting pediatric medical residents. Specifically, we will work to create a model program of collaborative patient care in which pediatric residents and behavioral health providers share care of patients with developmental and behavioral health concerns.
“Ultimately, across the aims of this project we will be able to gather data on the clinical, educational, and financial impact of collaborative care for children with ASD within the medical home. Such data will not only enhance the care and education provided across VUMC programs, but also will represent a model for expansion to other medical education programs and research related to this education.”
Elizabeth Turner is program coordinator for VKC Communications.