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Item 143 Training & Sustaining: Training and learning collaborative outcomes across a statewide network for early diagnosis of children with autism(Cambridge University Press, 2024-04-03) McNally Keehn, Rebecca; Paxton, Angela; Delaney, Mary; Ciccarelli, Mary; Pediatrics, School of MedicineOBJECTIVES/GOALS: Community-based primary care autism diagnostic models are one promising solution to delays in autism diagnosis. Our objective is to describe the development and report on outcomes related to primary care professional (PCP) training and sustained engagement in a longitudinal learning collaborative across a statewide network for autism diagnosis. METHODS/STUDY POPULATION: We developed ADAPT (i.e., Accelerating the Diagnosis of Autism with Primary care Training), a training program to prepare PCPs to develop independent competency in evaluation of autism in children ages 14-48 months. ADAPT includes didactic and case-based modules and expert practice-based coaching delivered by a diagnostic specialist; following training PCPs participate in a longitudinal learning collaborative. Aligned with competency-based medical education standards, measures of autism evaluation knowledge and diagnostic competency are collected. RESULTS/ANTICIPATED RESULTS: To date, 13 PCPs have completed ADAPT didactic and practicum training reaching competency in independent autism evaluation. Clinicians demonstrated significant improvement in total autism knowledge following didactic training (p=.02). There was an overall trend toward increased scoring agreement on an autism observational assessment over case observations and practicum evaluations. Similarly, PCPs demonstrated improved evaluation competence, moving on average from Advanced Beginner to Competent Performer as rated by expert trainers. Following training, PCPs attended 57% of monthly learning collaborative sessions. DISCUSSION/SIGNIFICANCE: Training PCPs to deliver autism evaluations as part of community-based models of care is a promising solution to address access and waitlist challenges. ADAPT is an intensive, standard PCP training model which results in achievement of independent competency and sustained engagement in in autism evaluation.Item Associations Among Referral Concerns, Screening Results, and Diagnostic Outcomes of Young Children Assessed in a Statewide Early Autism Evaluation Network(Elsevier, 2021-06) Keehn, Rebecca McNally; Tang, Qing; Swigonski, Nancy; Ciccarelli, Mary; Pediatrics, School of MedicineObjectives To examine associations between referral concerns, screening results, and diagnostic outcomes for young children evaluated across a statewide primary care network for early screening and diagnosis of autism spectrum disorder (ASD). Study design The Early Autism Evaluation Hub system was developed to increase developmental screening and improve access to timely ASD evaluations in local communities. In 2019, 858 children (ages 18-48 months; 40% diagnosed with ASD) received ASD evaluations across 12 Early Autism Evaluation Hubs. Data on primary care provider (PCP)- and caregiver-reported referral concerns, Modified Checklist for Autism in Toddlers, Revised with Follow-Up (MCHAT-R/F) and Ages and Stages Questionnaire, Third Edition (ASQ-3), and diagnostic outcome were collected. Results Among children evaluated, there was low concordance between PCP and caregiver referral concern. Although a positive MCHAT-R/F screen was associated with PCP but not caregiver-reported ASD referral concern, there was a significant linear relationship between MCHAT-R/F raw scores and both PCP and caregiver ASD referral concern. A different pattern of ASQ-3 delays was found to be associated with PCP-reported as compared with caregiver-reported ASD referral concern. Finally, PCP-reported ASD referral concern, positive MCHAT-R/F, and ASQ-3 Communication and Personal Social delays were associated with a significantly higher likelihood of subsequent ASD diagnosis. Conclusions Understanding how community PCPs use surveillance and screening data, the extent to which PCPs and caregivers have shared understanding and engage in collaborative decision-making about evaluation referral, and how these factors relate to diagnostic outcomes has the potential to impact educational efforts for both PCPs and caregivers of young children, as well as inform the development of more efficacious early identification approaches.Item Diagnostic Accuracy of Primary Care Clinicians Across a Statewide System of Autism Evaluation(American Academy of Pediatrics, 2023) McNally Keehn, Rebecca; Swigonski, Nancy; Enneking, Brett; Ryan, Tybytha; Monahan, Patrick; Martin, Ann Marie; Hamrick, Lisa; Kadlaskar, Girija; Paxton, Angela; Ciccarelli, Mary; Keehn, Brandon; Pediatrics, School of MedicineObjectives: To evaluate the diagnostic accuracy of the Early Autism Evaluation (EAE) Hub system, a statewide network that provides specialized training and collaborative support to community primary care providers in the diagnosis of young children at risk for autism spectrum disorder (ASD). Methods: EAE Hub clinicians referred children, aged 14 to 48 months, to this prospective diagnostic study for blinded follow-up expert evaluation including assessment of developmental level, adaptive behavior, and ASD symptom severity. The primary outcome was agreement on categorical ASD diagnosis between EAE Hub clinician (index diagnosis) and ASD expert (reference standard). Results: Among 126 children (mean age: 2.6 years; 77% male; 14% Latinx; 66% non-Latinx white), 82% (n = 103) had consistent ASD outcomes between the index and reference evaluation. Sensitivity was 81.5%, specificity was 82.4%, positive predictive value was 92.6%, and negative predictive value was 62.2%. There was no difference in accuracy by EAE Hub clinician or site. Across measures of development, there were significant differences between true positive and false negative (FN) cases (all Ps < .001; Cohen's d = 1.1-1.4), with true positive cases evidencing greater impairment. Conclusions: Community-based primary care clinicians who receive specialty training can make accurate ASD diagnoses in most cases. Diagnostic disagreements were predominately FN cases in which EAE Hub clinicians had difficulty differentiating ASD and global developmental delay. FN cases were associated with a differential diagnostic and phenotypic profile. This research has significant implications for the development of future population health solutions that address ASD diagnostic delays.Item Family-Centered Care Coordination in an Interdisciplinary Neurodevelopmental Evaluation Clinic: Outcomes From Care Coordinator and Caregiver Reports(Frontiers, 2020-10) McNally Keehn, Rebecca; Enneking, Brett; Ramaker, Margo; Goings, Michael; Yang, Ziyi; Carroll, Aaron; Ciccarelli, Mary; Pediatrics, School of MedicineChildren with neurodevelopmental disabilities experience many unmet healthcare needs. Care coordination is one critical solution to addressing the substantial strain on families, local communities, and the larger healthcare system. The purpose of this study was to implement a care coordination program in an interdisciplinary pediatric neurodevelopmental evaluation clinic and examine care coordinator and caregiver outcomes. Following neurodevelopmental diagnosis, children were provided with either care coordination (CC) or care as usual (CAU). For those receiving CC, the care coordinator documented family goals and care coordination activities, outcomes, and time spent. Caregivers in both groups completed a survey measuring access to needed services and caregiver stress and empowerment following their child's evaluation (T1) and 4-6 months post-evaluation (T2). Care coordinator findings demonstrated that over 85% of family goals focused on understanding the child's diagnosis, getting needed interventions and educational support, and accessing healthcare financing programs. More than half of care coordination activities were spent on engaging and educating the family; similarly, the most time-consuming care coordination efforts were in helping families understand their child's diagnosis and meeting family's basic needs. For those children referred to needed services, 54% were enrolled in one or more service at T2. Caregivers in both the CC and CAU groups reported an increase in stress related to interactions with their child as well as increased empowerment from T1 to T2. Contrary to our hypotheses, there were no significant group-by-time interactions across caregiver-report measures. While these findings further our understanding of care coordination delivery, they diverge from previous evidence demonstrating care coordination efficacy. This study paves the way for future opportunities to evaluate what kinds of care coordination supports family need at varying times in their child's healthcare journey and how the outcomes important to all stakeholders are measured to reflect true evaluation of efficacy.Item Get SET Early autism screening program(Elsevier, 2022-01) McNally Keehn, Rebecca; Ciccarelli, Mary; Pediatrics, School of MedicineQuestion Among toddlers, how does early autism-spectrum-disorder (ASD) screening affect referral and diagnosis? Design Cohort study. Setting Pediatric offices throughout San Diego County. Participants Two hundred three providers screened toddlers ages 12-24 months. Intervention Early ASD screening program, Get SET Early, employing the Communication and Symbolic Behavior Scales Infant-Toddler Checklist at ages 12, 18, and 24 months. Outcomes ASD detection rate and factors that influence the “SET,” screen-evaluate-treat sequence. Main Results Two hundred three pediatricians administered 57 603 screens. Only one-third of screen-positive children were referred for treatment, due to provider concern for false positive results. However, parental concern doubled the referral probability. Eight hundred ninety seven toddlers were evaluated, of whom one-half were diagnosed with ASD, approximately a 1% overall prevalence. Conclusions Get SET Early implementation detected ASD and initiated early treatment.Item Identifying Children With Medical Complexity for Care Coordination in Primary Care Settings(Sage, 2023-07) Burrell, Mikayla; Ciccarelli, Mary; Medicine, School of MedicineCharacteristics of a cohort of 98 children with medical complexity (CMC) insured by Medicaid were identified within an urban/rural pediatric practice for embedded nurse care coordination. Ninety percent of enrolled children fit the predefined requirements of requiring 3 or more subspecialists for their care. Neurology, orthopedic surgery, endocrinology, and gastroenterology were the most frequent subspecialists engaged in longitudinal care. The expected neurodevelopmental disabilities (cerebral palsy, spina bifida, Down syndrome, and other complex syndromes) were found in 64% of the patients. By applying a secondary definition to include children with complex neurodevelopmental or genetic syndromes, 98% of the patients were considered to be medically complex. The use of reliable and adequate criteria to identify medical complexity is important to determine which patients would most benefit from care coordination services, and our method was deemed successful.Item Impact of social complexity on outcomes in cystic fibrosis after transfer to adult care(Wiley, 2018-06) Crowley, Erin Michelle; Bosslet, Gabriel Timothy; Khan, Babar; Ciccarelli, Mary; Brown, Cynthia Diane; Medicine, School of MedicineObjective This study evaluates the roles of medical and social complexity in health care use outcomes in cystic fibrosis (CF) after transfer from pediatric to adult care. Methods Retrospective cohort design included patients with CF who were transitioned into adult care at Indiana University from 2005 to 2015. Predictor variables included demographic and comorbidity data, age at transition, treatment complexity score (TCS), and an objective scoring measure of their social complexity (Bob's Level of Social Support, BLSS). Outcome variables included outpatient visit rates and hospitalization rates. Pearson's correlations and linear regression were used to analyze the data. Results The median age of the patients (N = 133) at the time of transition was 20 (IQR 19‐23) years. The mean FEV1 % predicted at transition was 69 ± 24%. TCS correlated with outpatient visit rates (r = 0.3, P = 0.003), as well as hospitalization rates (r = 0.4, P < 0.001); while the BLSS only correlated with hospitalization rates (r = 0.7, P < 0.001). After adjusting for covariates, the strongest predictors of post‐transfer hospitalizations are BLSS (P < 0.0001) and pre‐transfer hospitalization rate (P < 0.0001). Conclusion Greater treatment complexity is associated with greater healthcare utilization overall, while greater social complexity is associated with increased hospitalizations (but not outpatient visits). Screening young adults for social complexity may identify high‐risk subpopulations and allow for patient centered interventions to support them and prevent avoidable health care use.Item A Statewide Tiered System for Screening and Diagnosis of Autism Spectrum Disorder(AAP, 2020-08) McNally Keehn, Rebecca; Ciccarelli, Mary; Szczepaniak, Dorota; Tomlin, Angela; Lock, Thomas; Swigonski, Nancy; Pediatrics, School of MedicineAlthough autism spectrum disorder (ASD) can be reliably detected in the second year of life, the average age of diagnosis is 4 to 5 years. Limitations in access to timely ASD diagnostic evaluations delay enrollment in interventions known to improve developmental outcomes. As such, developing and testing streamlined methods for ASD diagnosis is a public health and research priority. In this report, we describe the Early Autism Evaluation (EAE) Hub system, a statewide initiative for ASD screening and diagnosis in the primary care setting. Development of the EAE Hub system involved geographically targeted provision of developmental screening technical assistance to primary care, community outreach, and training primary care clinicians in ASD evaluation. At the EAE Hubs, a standard clinical pathway was implemented for evaluation of children, ages 18 to 48 months, at risk for ASD. From 2012 to 2018, 2076 children were evaluated (mean age: 30 months; median evaluation wait time: 62 days), and 33% of children received a diagnosis of ASD. Our findings suggest that developing a tiered system of developmental screening and early ASD evaluation is feasible in a geographic region facing health care access problems. Through targeted delivery of education, outreach, and intensive practice-based training, large numbers of young children at risk for ASD can be identified, referred, and evaluated in the local primary care setting. The EAE Hub model has potential for dissemination to other states facing similar neurodevelopmental health care system burdens. Implementation lessons learned and key system successes, challenges, and future directions are reviewed.