Acceptability and Access Metrics for Telehealth Consultation of Pediatric Neurodevelopmental Disabilities During COVID-19.

INTRODUCTION: We report caregiver agreement to attend telehealth neurodevelopmental consultation during COVID-19, demographic differences in agreement, reasons families declined, and clinical access metrics before and during COVID-19. METHOD: Data were gathered from telehealth referrals and consultations from April to July 2020. Schedulers documented agreement status and reasons for the decline. Wait time, lag time, and missed appointment rates were calculated to measure access. RESULTS: Ninety-one percent agreed to attend telehealth consultation; 55% of those who declined preferred in-person services. There were no demographic differences between those who accepted, declined, or did not respond. The median wait time from referral to appointment was 60 days. Missed appointment rates were consistent with prepandemic rates. DISCUSSION: Findings support literature suggesting patients are agreeable to telehealth. They diverged from evidence suggesting telehealth reduces missed appointments. Overall, results indicate telehealth is an acceptable alternative; however, further telehealth innovation is needed to address existing disparities.

Measures of tonic and phasic activity of the locus coeruleus-norepinephrine system in children with autism spectrum disorder: An event-related potential and pupillometry study.

A growing body of research suggests that locus coeruleus-norepinephrine (LC-NE) system may function differently in individuals with autism spectrum disorder (ASD). Understanding the dynamics of both tonic (resting pupil diameter) and phasic (pupil dilation response [PDR] and event-related potential [ERP]) indices may provide meaningful insights about the nature of LC-NE function in ASD. Twenty-four children with ASD and 27 age- and nonverbal-IQ matched typically developing (TD) children completed two experiments: (1) a resting eye-tracking task to measure tonic pupil diameter, and (2) a three-stimulus oddball paradigm to measure phasic responsivity using PDR and ERP. Consistent with prior reports, our results indicate that children with ASD exhibit increased tonic (resting pupil diameter) and reduced phasic (PDR and ERP) activity of the LC-NE system compared to their TD peers. For both groups, decreased phasic responsivity was associated with increased resting pupil diameter. Lastly, tonic and phasic LC-NE indices were primarily related to measures of attention-deficit/hyperactivity disorder (ADHD), and not ASD, symptomatology. These findings expand our understanding of neurophysiological differences present in ASD and demonstrate that aberrant LC-NE activation may be associated with atypical arousal and decreased responsivity to behaviorally-relevant information in ASD.

Provider and Caregiver Satisfaction with Telehealth Evaluation of Autism Spectrum Disorder in Young Children During the COVID-19 Pandemic.

The present study examines provider and caregiver satisfaction with telehealth evaluation of autism spectrum disorder (ASD) in young children during the coronavirus SARS-CoV-2 (COVID-19) pandemic. A telehealth model of ASD evaluation was implemented with 308 children ages 14 to 78 months between May 2020 to June 2021. Data were gathered from electronic health records, autism-specific telehealth diagnostic tools, and post-evaluation surveys. Overall, the majority of providers and caregivers were satisfied with telehealth ASD evaluation. Multiple variables were associated with ratings of satisfaction, differing by providers and caregivers. Findings have important implications for the feasibility and acceptability of telehealth ASD evaluations, in addition to key factors to consider in optimizing and sustaining telehealth evaluations beyond the COVID-19 pandemic.

Addressing Academic Concerns: A Survey of Primary Care Providers.

Given new clinical recommendations, we sought to better understand the perspectives and practices of primary care providers (PCPs) around pediatric academic concerns. Practicing PCPs were recruited to complete an 8-item self-report survey; 163 PCPs were included in the final analysis. Results indicated that 84% of PCPs perceived their role in addressing patients' academic concerns as highly important; yet there was variability in the frequency with which PCPs reported engaging in activities around these educational needs. There was a significant positive relationship between perception of role importance and engagement in clinical supports. Some differences were present in responses across PCP specialty area. More information about practice differences between provider types, rural versus urban practices, and how perceptions/practices differ based on provider demographics are likely to be useful areas for future consideration. Our findings highlight the need to advance PCP instruction for practical implementation to increase rates of engagement in these activities.

Care Coordination Using a Shared Plan of Care Approach: From Model to Practice.

INTRODUCTION: Children and youth with special health care needs (CYSHCN) need, but do not have, adequate care coordination (CC); CC leads to better pediatric care, improved family/professional experience of care, and enhanced population health. Current CC initiatives are promising but lack adherence to emerging definitions/standards. A Lucile Packard Report provides guidelines for using a Shared Plan of Care (SPoC) as a CC approach; studied implementation is needed. PURPOSE: The studied implementation of the Riley Care Coordination Program (RCCP) set out to: 1) illuminate components of family-centered, interdisciplinary, team-based care/coordination and SPoC, use 2) underscore family participation/engagement 3) reveal implementation processes/lessons learned. METHODS: Children (ages 2-10) with neurodevelopmental disabilities were referred by subspecialists; families agreed to participate in RCCP from a children's hospital ambulatory care setting. RCCP team used a five-phase workflow to implement CC: (1) Family Outreach/Engagement 2) Family and Team Pre-Visit Work, 3) Population-Based Teamwork, 4) Planned-Care Visits/SPOC "Co-Production", 5) Ongoing Care Coordination and Community Transfer. Family surveys and SPoC goals informed an evaluation. RESULTS: Children (268) with neurodevelopmental disabilities enrolled/completed the 6-month RCCP; it was a feasible endeavor. The co-produced SPoC supported families/care neighborhood partners to meet goals/unmet needs. Team plan-do-study-act improvement cycles informed RCCP enhancements. DISCUSSION/CONCLUSION: Eliciting/using family goals to drive CC emphasized family priorities; children/families gained interventions, treatments, confidence and navigation skills. Going beyond episodic, reactive care, RCCP achieved better CC with care neighborhood learning partnerships. Investing in this quality care coordination with fidelity to national standards holds promise.