Community-Academic Partnerships: A Systematic Review of the State of the Literature and Recommendations for Future Research.

POLICY POINTS: Communities, funding agencies, and institutions are increasingly involving community stakeholders as partners in research, to provide firsthand knowledge and insight. Based on our systematic review of major literature databases, we recommend using a single term, community-academic partnership (CAP), and a conceptual definition to unite multiple research disciplines and strengthen the field. Interpersonal and operational factors that facilitate or hinder the collaborative process have been consistently identified, including "trust among partners" and "respect among partners" (facilitating interpersonal factors) and "excessive time commitment" (hindering operational factor). Once CAP processes and characteristics are better understood, the effectiveness of collaborative partner involvement can be tested. CONTEXT: Communities, funding agencies, and institutions are increasingly involving community stakeholders as partners in research. Community stakeholders can provide firsthand knowledge and insight, thereby increasing research relevance and feasibility. Despite the greater emphasis and use of community-academic partnerships (CAP) across multiple disciplines, definitions of partnerships and methodologies vary greatly, and no systematic reviews consolidating this literature have been published. The purpose of this article, then, is to facilitate the continued growth of this field by examining the characteristics of CAPs and the current state of the science, identifying the facilitating and hindering influences on the collaborative process, and developing a common term and conceptual definition for use across disciplines. METHODS: Our systematic search of 6 major literature databases generated 1,332 unique articles, 50 of which met our criteria for inclusion and provided data on 54 unique CAPs. We then analyzed studies to describe CAP characteristics and to identify the terms and methods used, as well as the common influences on the CAP process and distal outcomes. FINDINGS: CAP research spans disciplines, involves a variety of community stakeholders, and focuses on a large range of study topics. CAP research articles, however, rarely report characteristics such as membership numbers or duration. Most studies involved case studies using qualitative methods to collect data on the collaborative process. Although various terms were used to describe collaborative partnerships, few studies provided conceptual definitions. Twenty-three facilitating and hindering factors influencing the CAP collaboration process emerged from the literature. Outcomes from the CAPs most often included developing or refining tangible products. CONCLUSIONS: Based on our systematic review, we recommend using a single term, community-academic partnership, as well as a conceptual definition to unite multiple research disciplines. In addition, CAP characteristics and methods should be reported more systematically to advance the field (eg, to develop CAP evaluation tools). We have identified the most common influences that facilitate and hinder CAPs, which in turn should guide their development and sustainment.

Caregiver Perspectives on Telehealth Assessment and Other Supports for Infants with Early Developmental Concerns.

This study examined the experiences of families of children with developmental concerns in the first year of life, before formal diagnostic evaluations are typically conducted. We aimed to understand the impact of participation in a telehealth-based research evaluation in infancy, identify existing community-based supports perceived favorably by caregivers, and identify suggestions for future directions. Participants were recruited from an prior study evaluating a telehealth assessment for infants with early social communication delays. Here, we interviewed caregivers (n = 19) who participated in follow-up study in toddlerhood. Transcripts from the semi-structured interviews were transcribed and analyzed using both inductive thematic and content coding approaches. Analysis of these interviews resulted in four core themes describing caregiving during this time: (1) Caregivers felt lonely, overwhelmed, and dismissed by providers, leading to feelings of uncertainty about their child's development and future; (2) Telehealth assessments were appreciated because external supports are minimal, complex to navigate, and do not address all areas of need; (3) Desire for additional community and connection; and (4) Information is power. Caregivers reported participating in the telehealth assessments helped them to feel reassured, validated and supported. Outside the study, they sought a wide variety of services and resources. The most frequent requests were for parent coaching sessions and family navigation. Caregivers experienced uncertainty and disempowerment during the pre-diagnostic period and sought education and guidance during this time. Findings reflect the importance of centering family priorities when developing early intervention services for infants with elevated likelihood of autism.

Study Protocol for a Cluster, Randomized, Controlled Community Effectiveness Trial of the Early Start Denver Model (ESDM) Compared to Community Early Behavioral Intervention (EBI) in Community Programs serving Young Autistic Children: Partnering for Autism: Learning more to improve Services (PALMS).

BACKGROUND: The rising number of children identified with autism has led to exponential growth in for-profit applied behavior analysis (ABA) agencies and the use of highly structured approaches that may not be developmentally appropriate for young children. Multiple clinical trials support naturalistic developmental behavior interventions (NDBIs) that integrate ABA and developmental science and are considered best practices for young autistic children. The Early Start Denver Model (ESDM) is a comprehensive NDBI shown to improve social communication outcomes for young autistic children in several controlled efficacy studies. However, effectiveness data regarding NDBI use in community-based agencies are limited. METHODS: This study uses a community-partnered approach to test the effectiveness of ESDM compared to usual early behavioral intervention (EBI) for improving social communication and language in autistic children served by community agencies. This is a hybrid type 1 cluster-randomized controlled trial with 2 conditions: ESDM and EBI. In the intervention group, supervising providers will receive training in ESDM; in the control group, they will continue EBI as usual. We will enroll and randomize 100 supervisors (50 ESDM, 50 EBI) by region. Each supervisor enrolls 3 families of autistic children under age 5 (n = 300) and accompanying behavior technicians (n = 200). The primary outcome is child language and social communication at 6 and 12 months. Secondary outcomes include child adaptive behavior, caregiver use of ESDM strategies, and provider intervention fidelity. Child social motivation and caregiver fidelity will be tested as mediating variables. ESDM implementation determinants will be explored using mixed methods. DISCUSSION: This study will contribute novel knowledge on ESDM effectiveness, the variables that mediate and moderate child outcomes, and engagement of its mechanisms in community use. We expect results from this trial to increase community availability of this model and access to high-quality intervention for young autistic children, especially those who depend on publicly funded intervention services. Understanding implementation determinants will aid scale-up of effective models within communities. TRAIL REGISTRATION: Clinicaltrials.gov identifier number NCT06005285. Registered on August 21, 2023. PROTOCOL VERSION: Issue date 6 August 2024; Protocol amendment number: 02.

Sex differences in early autism screening using the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up (M-CHAT-R/F).

LAY ABSTRACT: This study examined a widely used autism screening tool, the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up to identify differences in screening for autism between toddler males and females. Examining sex differences in screening for autism in toddlerhood is important as it determines who will be referred for evaluations and receive diagnoses, which is critical for access to autism-specific early intervention. This study found that females were less likely to screen positive and be invited for evaluations compared with males. Females at high likelihood for autism were less likely to be diagnosed with autism, which decreases confidence in the screener's results. Importantly, the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up accurately identified both males and females with autism. Future research should examine ways to improve accuracy in screening results for females.

Initial diagnostic impressions of trainees during autism evaluations: High specificity but low sensitivity.

Reducing the age of first autism diagnosis facilitates access to critical early intervention services. A current "waitlist crisis" for autism diagnostic evaluation thus demands that we consider novel use of available clinical resources. Previous work has found that expert autism clinicians can identify autism in young children with high specificity after only a brief observation; rapid identification by non-experts remains untested. In the current study, 252 children ages 12-53 months presented for a comprehensive autism diagnostic evaluation. We found that junior clinicians in training to become autism specialists (n = 29) accurately determined whether or not a young child would be diagnosed with autism in the first five minutes of the clinic visit in 75% of cases. Specificity of brief observations was high (0.92), suggesting that brief observations may be an effective tool for triaging young children toward autism-specific interventions. In contrast, the lower negative predictive value (0.71) of brief observations, suggest that they should not be used to rule out autism. When trainees expressed more confidence in their initial impression, their impression was more likely to match the final diagnosis. These findings add to a body of literature showing that clinical observations of suspected autism should be taken seriously, but lack of clinician concern should not be used to rule out autism or overrule other indicators of likely autism, such as parent concern or a positive screening result.

Leveraging telehealth to evaluate infants with prodromal autism spectrum disorder characteristics using the telehealth evaluation of development for infants.

LAY ABSTRACT: Many families seeking early evaluations for autism spectrum disorder face long waitlists, must often travel to centers with appropriate expertise, and are frequently told by providers to "wait and see." This results in significant stress for families and delayed supports to infants and their caregivers who could benefit. This study evaluated whether telehealth could be used to identify and evaluate infants with early autism spectrum disorder characteristics in the first year of life. In this study, we evaluated 41 infants via telehealth using a standard set of probes and scored behavior related to social communication, play, imitation, and other developmental domains. We found the majority of infants demonstrated elevated likelihood of autism spectrum disorder on both parent-reported questionnaires and examiner-rated behavior. Caregiver ratings of the overall utility of the protocol used in this study were high. Overall, this study demonstrates the feasibility for telehealth-based approaches to evaluate infants' with elevated likelihood of autism spectrum disorder in the first year of life, which could help to improve families' access to care and to expand our capacity to conduct studies evaluating possible intervention supports.

Short report: Experiences of Caregivers Participating in a Telehealth Evaluation of Development for Infants (TEDI).

A growing literature supports the feasibility and validity of telehealth-based assessments for autism spectrum disorder (ASD). Better understanding families' experiences is crucial for sustained use beyond the COVID-19 pandemic. This study qualitatively examines caregiver experiences with the Telehealth Evaluation of Development for Infants (TEDI) protocol to better understand benefits and challenges of telehealth-based evaluations. Caregivers (N = 32) completed an online survey following a telehealth-based evaluation with their 6-12 month-old infants. Open-ended text responses to queries about perceived benefits, challenges, and suggestions for future adaptations were coded. Most caregivers reported positive experiences with minor feedback relating to tailoring of individual needs. Responses suggest the TEDI is a feasible approach and provide guidance for components of successful telehealth evaluations more broadly.

The first five minutes: Initial impressions during autism spectrum disorder diagnostic evaluations in young children.

Diagnosticians report that autism spectrum disorder (ASD) is immediately apparent in some, but not all, children ultimately diagnosed. Clinicians' initial diagnostic impressions have implications for ASD early detection, yet the literature raises questions about their accuracy. This study explores diagnostic impressions of ASD specialists made within the first 5 minutes of meeting a young child and investigates factors associated with the match between initial impressions and final diagnoses. Participants were children (n = 294, aged 12-53 months) referred for an ASD evaluation as part of multi-site ASD screening studies. After 5 minutes observing each child, clinicians with expertise diagnosing ASD recorded if they thought the child would meet criteria for ASD following a complete evaluation, and recorded their confidence in this impression. Clinicians' initial impressions matched the final diagnosis in 81% of cases. Ninety-two percent of cases initially thought to have ASD met criteria following a full evaluation; however, 24% of cases initially thought not to have ASD also met criteria, suggesting a high miss rate. Clinicians were generally confident in their initial impressions, reporting highest confidence for children initially thought correctly not to have ASD. ASD behavioral presentation, but not demographic characteristics or developmental level, were associated with matching initial impression and final diagnosis, and confidence. Brief observations indicating ASD should trigger referral to intervention services, but are likely to under-detect positive cases and should not be used to rule out ASD, highlighting the need to incorporate information beyond initial clinical impression. LAY SUMMARY: When children come in for an autism evaluation, clinicians often form early impressions-before doing any formal testing-about whether the child has autism. We studied how often these early impressions match the final diagnosis, and found that clinicians could not easily rule out autism (many children who initially appeared not to have autism were ultimately diagnosed), but were generally accurate ruling in autism (when a child appeared to have autism within 5 minutes, they were almost always so diagnosed).

Brief Report: Preliminary Feasibility of the TEDI: A Novel Parent-Administered Telehealth Assessment for Autism Spectrum Disorder Symptoms in the First Year of Life.

Families with early concerns about infant symptoms of ASD have limited access to experienced professionals for screening and guidance. Telehealth has been used to reduce access disparities in other pediatric populations and has shown promise in parent-implemented interventions for ASD. We investigated the feasibility of a novel level-2 telehealth assessment of infants' early social communication and ASD symptoms, the Telehealth Evaluation of Development for Infants (TEDI). Parents of eleven infants aged 6-12 months were coached to administer specific semi-structured behavioral probes. Initial feasibility, reliability, and acceptability benchmarks were met. These findings suggest the feasibility of screening infants via telehealth, and are supportive of further large-scale efforts to validate this method for longitudinal monitoring of symptomatic infants in community settings.

Quantifying Caregiver Change Across Early Autism Interventions Using the Measure of NDBI Strategy Implementation: Caregiver Change (MONSI-CC).

This study aimed to provide initial validity and reliability of the Measure of NDBI Strategy Implementation-Caregiver Change (MONSI-CC), a novel measure that captures changes in caregivers' implementation of NDBI strategies during early intervention. The MONSI-CC was applied to 119 observations of 43 caregiver-child dyads of preschoolers with autism spectrum disorders (ASD). The MONSI-CC showed high inter-rater and test-retest reliability and captured significant improvements in caregivers' implementation of NDBI strategies. Significant associations between improvements in caregiver NDBI implementation and improvements in the child's ASD symptoms also emerged. Our work shows promising evidence for the utility of the MONSI-CC to evaluate implementation of NDBI strategies by caregivers as a mediating and moderating factor for treatment effects on children with ASD.

An open resource for transdiagnostic research in pediatric mental health and learning disorders.

Technological and methodological innovations are equipping researchers with unprecedented capabilities for detecting and characterizing pathologic processes in the developing human brain. As a result, ambitions to achieve clinically useful tools to assist in the diagnosis and management of mental health and learning disorders are gaining momentum. To this end, it is critical to accrue large-scale multimodal datasets that capture a broad range of commonly encountered clinical psychopathology. The Child Mind Institute has launched the Healthy Brain Network (HBN), an ongoing initiative focused on creating and sharing a biobank of data from 10,000 New York area participants (ages 5-21). The HBN Biobank houses data about psychiatric, behavioral, cognitive, and lifestyle phenotypes, as well as multimodal brain imaging (resting and naturalistic viewing fMRI, diffusion MRI, morphometric MRI), electroencephalography, eye-tracking, voice and video recordings, genetics and actigraphy. Here, we present the rationale, design and implementation of HBN protocols. We describe the first data release (n=664) and the potential of the biobank to advance related areas (e.g., biophysical modeling, voice analysis).

Measuring Changes in Social Communication Behaviors: Preliminary Development of the Brief Observation of Social Communication Change (BOSCC).

Psychometric properties and initial validity of the Brief Observation of Social Communication Change (BOSCC), a measure of treatment-response for social-communication behaviors, are described. The BOSCC coding scheme is applied to 177 video observations of 56 young children with ASD and minimal language abilities. The BOSCC has high to excellent inter-rater and test-retest reliability and shows convergent validity with measures of language and communication skills. The BOSCC Core total demonstrates statistically significant amounts of change over time compared to a no change alternative while the ADOS CSS over the same period of time did not. This work is a first step in the development of a novel outcome measure for social-communication behaviors with applications to clinical trials and longitudinal studies.

Measuring outcome in an early intervention program for toddlers with autism spectrum disorder: use of a curriculum-based assessment.

Measuring progress of children with autism spectrum disorder (ASD) during intervention programs is a challenge faced by researchers and clinicians. Typically, standardized assessments of child development are used within research settings to measure the effects of early intervention programs. However, the use of standardized assessments is not without limitations, including lack of sensitivity of some assessments to measure small or slow progress, testing constraints that may affect the child's performance, and the lack of information provided by the assessments that can be used to guide treatment planning. The utility of a curriculum-based assessment is discussed in comparison to the use of standardized assessments to measure child functioning and progress throughout an early intervention program for toddlers with risk for ASD. Scores derived from the curriculum-based assessment were positively correlated with standardized assessments, captured progress masked by standardized assessments, and early scores were predictive of later outcomes. These results support the use of a curriculum-based assessment as an additional and appropriate method for measuring child progress in an early intervention program. Further benefits of the use of curriculum-based measures for use within community settings are discussed.

Brief Report: Toward Refinement of a Predictive Behavioral Profile for Treatment Outcome in Children with Autism.

Previously researchers identified a behavioral profile that predicted treatment response of children with autism to a specific behavioral intervention, Pivotal Response Training (PRT). This preliminary investigation sought to refine this profile by obtaining six participants matching the original nonresponder profile on all but one of the profile behaviors (toy contact or avoidance) and then assessing their response to PRT. In addition, participants received a course of Discrete Trial Training (DTT) to determine whether the profile predicted child response to this intervention. Altering the original profile behavior of toy contact led to improved response to PRT while, altering the profile behavior of high avoidance had little impact on treatment response, and the profile was not predictive of response to DTT.