Measuring Developmental Delays: Comparison of Parent Report and Direct Testing.

PURPOSE: Developmental assessment is part of a comprehensive autism evaluation. During in-person evaluations, developmental assessment is completed via direct testing by an examiner. In telehealth evaluations, developmental assessment relies on caregiver-report instruments. This study examined correspondence between caregiver report and direct testing of developmental skills. METHODS: Participants were 93 children, aged 18-42 months, undergoing evaluation for possible autism spectrum disorder (ASD). Caregivers were interviewed with the Developmental Profile, 4th edition (DP-4) via telehealth platform and children were tested in person 2-4 weeks later using the Mullen Scales of Early Learning (MSEL). RESULTS: Correlations between the DP-4 and MSEL were high (ranging from 0.50 to 0.82) across standard scores, age equivalents, and functional categories, as well as across individual subtests and overall composite scores. CONCLUSION: The high convergent validity found in this study suggests that the DP-4 provides a suitable proxy for direct developmental testing using the MSEL in the context of telehealth evaluations for ASD in young children, delivering a good estimate of both developmental functioning and presence of delays. TRIAL REGISTRATION: Data were obtained from registered clinical trial NCT05047224, date of registration 2021-09-07.

Development of a Novel Telemedicine Tool to Reduce Disparities Related to the Identification of Preschool Children with Autism.

The wait for ASD evaluation dramatically increases with age, with wait times of a year or more common as children reach preschool. Even when appointments become available, families from traditionally underserved groups struggle to access care. Addressing care disparities requires designing identification tools and processes specifically for and with individuals most at-risk for health inequities. This work describes the development of a novel telemedicine-based ASD assessment tool, the TELE-ASD-PEDS-Preschool (TAP-Preschool). We applied machine learning models to a clinical data set of preschoolers with ASD and other developmental concerns (n = 914) to generate behavioral targets that best distinguish ASD and non-ASD features. We conducted focus groups with clinicians, early interventionists, and parents of children with ASD from traditionally underrepresented racial/ethnic and linguistic groups. Focus group themes and machine learning analyses were used to generate a play-based instrument with assessment tasks and scoring procedures based on the child's language (i.e., TAP-P Verbal, TAP-P Non-verbal). TAP-P procedures were piloted with 30 families. Use of the instrument in isolation (i.e., without history or collateral information) yielded accurate diagnostic classification in 63% of cases. Children with existing ASD diagnoses received higher TAP-P scores, relative to children with other developmental concerns. Clinician diagnostic accuracy and certainty were higher when confirming existing ASD diagnoses (80% agreement) than when ruling out ASD in children with other developmental concerns (30% agreement). Utilizing an equity approach to understand the functionality and impact of tele-assessment for preschool children has potential to transform the ASD evaluation process and improve care access.

Development of an App for Tracking Family Engagement With Early Intervention Services: Focus Groups and Pilot Evaluation Study.

BACKGROUND: Expedient access to early intervention (EI) systems has been identified as a priority for children with developmental delays, identified disabilities, and other special health care needs. Despite the mandated availability of EI, it remains challenging for families to navigate referral processes and establish appropriate services. Such challenges disproportionately affect families from traditionally underserved communities. Mobile health apps can improve clinical outcomes, increase accessibility to health services, and promote adherence to health-related interventions. Though promising, the implementation of apps within routine care is in its infancy, with limited research examining the components of what makes an effective app or how to reach families most impacted by inequities in health care delivery. OBJECTIVE: In study 1, we conducted focus groups to access a broad range of perspectives on the process of navigating the EI system, with the dual goals of identifying ways in which a patient-facing app might facilitate this process and identifying barriers to use with traditionally underrepresented and underserved groups. In study 2, focus group findings informed the development of a patient-facing app, which was subsequently tested with a pilot sample of 5 families. METHODS: In study 1, the focus groups included 29 participants from 4 shareholder groups. Targeted sampling was used to recruit participants from traditionally underrepresented groups. Focus group questions sought information about barriers families experience as they navigate the EI system, ideal features of a patient-facing app designed to track family engagement with the EI system, and potential barriers. Focus group procedures were informed by the Consolidated Framework for Implementation Research framework. In study 2, a pilot app was developed. The app was tested with a sample of 5 families of young children involved in the EI system. Families provided information on app functionality and usability. RESULTS: Qualitative analysis revealed a desire for increased communication and information about the process of accessing EI services, potential utility of an app for communication purposes, and clear recommendations for app features. Insights from focus groups were used to inform the development of the Family on Track app and related implementation supports. App features included survey customization, timing and delivery of prompts, and questions related to barriers and service satisfaction. Implementation supports include a visual guide for app installation, resources related to common family questions, and availability of study personnel to guide families through installation and provide ongoing support. Field testing provided preliminary information about app usability, including identifying future directions. CONCLUSIONS: The results of this study could support the development of a new way for the EI system to communicate and connect with families, provide families with a means to communicate satisfaction and frustration, and access the supports they need to be active participants in their child's care.

A Randomized Trial of the Accuracy of Novel Telehealth Instruments for the Assessment of Autism in Toddlers.

PURPOSE: Telemedicine approaches to autism (ASD) assessment have become increasingly common, yet few validated tools exist for this purpose. This study presents results from a clinical trial investigating two approaches to tele-assessment for ASD in toddlers. METHODS: 144 children (29% female) between 17 and 36 months of age (mean = 2.5 years, SD = 0.33 years) completed tele-assessment using either the TELE-ASD-PEDS (TAP) or an experimental remote administration of the Screening Tool for Autism in Toddlers (STAT). All children then completed traditional in-person assessment with a blinded clinician, using the Mullen Scales of Early Learning (MSEL), Vineland Adaptive Behavior Scales, 3rd Edition (VABS-3), and Autism Diagnostic Observation Schedule (ADOS-2). Both tele-assessment and in-person assessment included a clinical interview with caregivers. RESULTS: Results indicated diagnostic agreement for 92% of participants. Children diagnosed with ASD following in-person assessment who were missed by tele-assessment (n = 8) had lower scores on tele- and in-person ASD assessment tools. Children inaccurately identified as having ASD by tele-assessment (n = 3) were younger than other children and had higher developmental and adaptive behavior scores than children accurately diagnosed with ASD by tele-assessment. Diagnostic certainty was highest for children correctly identified as having ASD via tele-assessment. Clinicians and caregivers reported satisfaction with tele-assessment procedures. CONCLUSION: This work provides additional support for the use of tele-assessment for identification of ASD in toddlers, with both clinicians and families reporting broad acceptability. Continued development and refinement of tele-assessment procedures is recommended to optimize this approach for the needs of varying clinicians, families, and circumstances.

Tele-assessment of young children referred for autism spectrum disorder evaluation during COVID-19: Associations among clinical characteristics and diagnostic outcome.

LAY ABSTRACT: The diagnosis of autism spectrum disorder (ASD) has traditionally been made through in-person evaluation. While the COVID-19 pandemic disrupted access to ASD services, there has been remarkable growth in research focused on novel ASD diagnostic practices, including the use of telemedicine. We implemented a standard ASD tele-assessment evaluation procedure, including use of a novel remote clinician-coached, caregiver-delivered ASD assessment tool (TELE-ASD-PEDS; TAP), with the goal of continuing to provide diagnostic services to young children and their families during the pandemic. We examined the relationship between child characteristics and diagnostic outcome for 335 children, ages 14-78 months, who received ASD tele-assessment conducted by psychologists and pediatricians in an outpatient clinic of a Midwestern academic medical center. We found that clinicians could make a determination about ASD diagnosis for most children (85%) evaluated using tele-assessment. Child clinical characteristics, including TAP scores and clinician ratings of ASD symptoms, were related to diagnostic outcome (i.e. diagnosis of ASD, no ASD, and Unsure about ASD). When all clinical characteristics were examined together, the presence of specific repetitive behaviors predicted ASD diagnosis. We also found that the TAP is effective for making an ASD diagnosis when used as part of comprehensive tele-assessment evaluation in children ⩾ 36 months of age with delayed language. Our study adds to an increasing body of research supporting use of tele-assessment for diagnosis of ASD. Although further research is needed, telemedicine may help families from different backgrounds and geographic locations to access high-quality diagnostic services.

Transitioning to Telemedicine During COVID-19: Impact on Perceptions and Use of Telemedicine Procedures for the Diagnosis of Autism in Toddlers.

The COVID-19 pandemic has increased the use of telemedicine as an avenue to address the need for diagnostic clarification in young children at risk for autism spectrum disorder (ASD). Although preliminary research has supported the use of telemedicine for identifying ASD in toddlers, little is known about the experiences of practitioners attempting direct-to-home tele-assessment. We surveyed diagnostic providers regarding changes in practice behavior in the initial months of the COVID-19 pandemic and their perceptions of ASD tele-assessment. We also examined the use of the TELE-ASD-PEDS, a novel tool for ASD tele-assessment, in response to COVID-19 at seven sites across the country. Results support the clinical acceptability and diagnostic utility of ASD tele-assessment while also highlighting critical avenues of future investigation.

Utilization of telemedicine to support caregivers of young children with ASD and their Part C service providers: a comparison of intervention outcomes across three models of service delivery.

BACKGROUND: Families of young children with autism spectrum disorder (ASD) frequently experience barriers to accessing evidence-based early intervention services. Telemedicine presents an opportunity to increase access to these services, particularly for families in rural and under-resourced areas. The present article describes a brief behavioral intervention and support model for families of young children with concerns for ASD. In the context of the COVID-19 pandemic, this service model shifted to telemedicine-only service delivery, resulting in an opportunity to analyze intervention outcomes from services delivered either via traditional in-person visits, telemedicine-only sessions, or a hybrid model including both in-person and telemedicine sessions. METHODS: Data are presented for 115 families with toddlers 16-33 months of age who participated in a six-session behavioral intervention and support service model either in-person, through telemedicine, or through a hybrid service model. This intervention was available for families referred for ASD evaluation through the state Part C early intervention program. Intervention feasibility, fidelity of implementation, child outcomes, and stakeholder satisfaction are compared across service delivery models. RESULTS: Caregivers, behavioral consultants, and Part C early intervention providers reported satisfaction with services, regardless of service delivery model. Caregivers and consultants also reported positive child outcomes. Statistically significant differences emerged for caregiver- and consultant-reported child outcomes in some domains, with stakeholders in the telemedicine-only group reporting slightly less improvement, compared to stakeholders in the in-person-only group. Caregivers and consultants in the telemedicine-only group also provided qualitative feedback on benefits and challenges related to telemedicine services. CONCLUSIONS: Both caregivers and behavioral consultants reported positive outcomes following a brief behavioral intervention and support model targeted at families of young children with concern for ASD. Stakeholders reported improvement in child behavior and satisfaction with services across in-person, telemedicine-only, and hybrid models of service delivery. These results suggest that telemedicine presents a promising opportunity for increasing service access. Additional research is needed to continue optimizing the experience of telemedicine-based service delivery for both families and intervention providers.

Toward Novel Tools for Autism Identification: Fusing Computational and Clinical Expertise.

Barriers to identifying autism spectrum disorder (ASD) in young children in a timely manner have led to calls for novel screening and assessment strategies. Combining computational methods with clinical expertise presents an opportunity for identifying patterns within large clinical datasets that can inform new assessment paradigms. The present study describes an analytic approach used to identify key features predictive of ASD in young children, drawn from large amounts of data from comprehensive diagnostic evaluations. A team of expert clinicians used these predictive features to design a set of assessment activities allowing for observation of these core behaviors. The resulting brief assessment underlies several novel approaches to the identification of ASD that are the focus of ongoing research.

Enhancing developmental-behavioral pediatric rotations by teaching residents how to evaluate autism in primary care.

LAY ABSTRACT: Most physician preparation programs do not provide enough practical experiences in autism-related care. This is especially true for how to assess for and diagnose autism. Without this training, many pediatricians are not well prepared to implement appropriate care for children with autism and their families. We designed a curriculum to improve training for medical residents that involved explicit hands-on training in diagnostic identification and care coordination for toddlers at risk for autism. We collected data to assess whether our enhanced curriculum led to increased comfort level across recommended practice behaviors. Almost all the residents were able to complete the training within their rotation and our surveys indicated significant increases in residents feeling more comfortable identifying symptoms of autism, providing feedback about diagnostic decisions, and effectively connecting families with services. A significant majority of residents considered it appropriate or very appropriate for children to receive a diagnosis solely from a primary care provider. Our results suggest feasibility of the enhanced model, and this project reflects the first step in advancing incorporation of autism training into pediatric residency programs.

Parent Perceptions of Caregiver-Mediated Telemedicine Tools for Assessing Autism Risk in Toddlers.

Telemedicine tools have potential for increasing access to diagnostic services for children with autism spectrum disorder (ASD). Past work has utilized tele-assessment procedures in which remote psychologists observe administration of interactive screening instruments by trained, on-site providers. Although promising, this approach relies on two clinicians, limiting its efficiency and scalability. The present study examined the use, acceptability, and parents' perceptions of two caregiver-mediated tools for assessing ASD risk in toddlers, in which remote clinicians guided parents to complete interactive screening activities with their children. Most parents found tele-assessment to be comfortable, and many reported liking the parent-led nature of these tools. Parents also offered constructive feedback, which was used to modify the tele-assessment process for future study.

Use of the TELE-ASD-PEDS for Autism Evaluations in Response to COVID-19: Preliminary Outcomes and Clinician Acceptability.

The COVID-19 pandemic has caused unprecedented disruptions to healthcare, including direct impacts on service delivery related to autism spectrum disorder (ASD). Caregiver-mediated tele-assessment offers an opportunity to continue services while adhering to social distancing guidelines. The present study describes a model of tele-assessment for ASD in young children, implemented in direct response to disruptions in care caused by the COVID-19 pandemic. We present preliminary data on the outcomes and provider perceptions of tele-assessments, together with several lessons learned during the period of initial implementation.