Delayed Milestones and Demographic Factors Relate to the Accuracy of Autism Screening in Females Using Spoken Language.

Examine how milestone development, demographics, and emotional/behavioral functioning predict autistic females meeting the cutoff on a commonly used Autism screening tool (Social Communication Questionnaire: SCQ). We hypothesized that autistic girls with fewer developmental delays, whose parents have lower education, or are Black or Multiracial would be less likely to meet the SCQ cutoff. Further, those with more symptoms of Withdrawal/Depression, Social Problems, Thought Problems, and Attention Problems on the (Child Behavioral Checklist: CBCL) would be more likely to screen positive. A subset of participants enrolled in a large national cohort (SPARK) were included (5,946 autistic females). A cutoff score on the SCQ of 11 was used to form groups: Meet (M: N = 5,186) and Not Meeting (NM: N = 760). Autistic girls who had delayed toileting and motor milestones and whose parents attained higher education were more likely to screen positive. Girls who scored within the clinical range on the CBCL Thought Problems and Attention Problems syndrome scales were more likely to screen positive. Race and reported symptoms on the Withdrawn/Depressed and Social Problems syndrome scales did not relate to screening status. Results further support the existing literature suggesting that autistic girls must present with more significant delays/symptoms to be screened and diagnosed with autism, which can could impact their access to early intervention services and future skill development. Future research should examine additional factors that specifically put females at a disadvantage for being accurately identified, particularly for those who are speaking and/or of average cognitive ability.

Novel approaches to measuring cognition in individuals with severe to profound functional impairment: A pilot study in SCN2A-related disorder.

Valid clinical outcome assessments with the ability to capture meaningful aspects of neurodevelopment for individuals with neurogenetic conditions associated with profound functional impairments are lacking, yet critical for clinical care and clinical trial readiness. The purpose of this pilot study was to examine and compare the initial psychometric properties of a series of commonly used standardized and norm-referenced measures of cognition and adaptive functioning as well as alternative measures of neurobehavioral functioning designed to capture responsivity (i.e., alertness, awareness, responsivity to the environment) in those with acquired brain injuries in a sample of individuals with severe to profound functional impairment associated with a neurogenetic etiology. Ten individuals (median age = 7.5 years, IQR = 4.8-11.5, range 4-21; n = 8 male) with severe to profound functional impairment associated with SCN2A-Related Disorder and their parents were included in this study. Parents completed the Vineland Adaptive Behavior Scales, Third Edition Comprehensive Interview (Vineland-3) and the Developmental Profile, Fourth Edition Cognitive Scale (DP-4) and their children completed the Bayley Scales of Infant and Toddler Development Cognitive Scale (Bayley-4; given out of the standardized age-range) and two measures of responsivity, the Coma Recovery Scale, Pediatric and the Rappaport Coma/Near Coma Scale. Results demonstrated exceptionally low skills (median Vineland-3 Adaptive Behavior Composite = 35.5) and frequent floor effects across norm-referenced measures (i.e., Vineland-3, DP-4, Bayley-4); however, raw scores yielded more range and variability and no absolute floor effects. There were also no floor effects on measures of responsivity and findings suggest that these alternative tools may capture more variability in some aspects of neurobehavioral functioning that are critical to higher order cognitive functions, particularly for those with mental-ages below a 12 month-level. Initial evidence of construct validity of all measures in this population was shown. Findings support ongoing investigation of measures of responsivity and identified areas of potential measure modification that may improve applicability for individuals with severe to profound functional impairment associated with neurogenetic as opposed to acquired etiologies.

Patient-advocate-led global coalition adapting fit-for-purpose outcomes measures to assure meaningful inclusion of DEEs in clinical trials.

Existing clinical tools that measure non-seizure outcomes lack the range and granularity needed to capture skills in developmental and epileptic encephalopathy (DEE)-affected individuals who also fall in the severe to profound range of intellectual disability. This effectively excludes those with severe impairments from clinical trials, impeding the ability of sponsors to evaluate disease-modifying therapies (DMTs). The Inchstone Project, an international, patient advocate-led collaboration, brings together leading researchers, clinicians, pharmaceutical companies, and advocates to develop an adapted, validated assessment battery within 5 years. The goal is to support trials of DMTs for the DEEs by providing sufficiently sensitive measurement tools to demonstrate therapeutic efficacy. An initial pilot study administered 7 established assessments to 10 individuals affected by SCN2A-DEE, identifying specific limitations of existing measures and areas for improvement. It was clear that most tools do not account for challenges throughout the DEE population, including vision impairments, significant motor impairments and profound intellectual disability, which need to be accounted for in creating a 'fit-for-purpose' battery for the DEE population. Several novel assessments, including two measures of responsivity developed for use in monitoring recovery after acquired brain injury as well as individualized Goal Attainment Scaling, showed promise in this group. The team also completed a DEE-wide survey with over 270 caregivers documenting their children's abilities and priorities for their improvement from new treatments. The Inchstone team is using this information to evaluate how existing tools might be updated to better capture what is most important to families and measure their child's small but important improvements over time. These efforts are building a coherent picture across multiple DEEs of what domains, or concepts of interest, have the greatest impact on most patients and families. The Inchstone team is on course to adapt non-seizure outcome measures that are (1) sufficiently sensitive to measure small increments of meaningful change ('Inchstones') and (2) applicable to multiple DEE conditions.

DEE-P Connection's Inchstone project is adapting assessment tools to measure the smallest developmental changes in those affected by developmental and epileptic encephalopathies (DEEs) - severe epilepsy and related developmental disorders. More sensitive measures will allow profoundly impacted individuals to be effectively included in clinical trials and result in better DEE treatments. Caregivers of children with DEEs understand firsthand that clinical tools intended to measure non-seizure outcomes, like communication and motor skills, were not designed for and don't work for their children. More sensitive tools are needed to measure the small changes that occur in DEEs. The limitations of existing measurement tools for DEEs have significant consequences: - Non-seizure responses to new therapies cannot be measured without tools designed specifically for individuals with severe to profound intellectual disability.- If a response cannot be measured in a trial, a potentially beneficial impact will be missed and a therapy, having failed to demonstrate an effect, may not gain regulatory approval.- DEE-affected individuals are less likely to benefit from the wave of new disease-modifying therapies providing hope for many other rare genetic diseases. DEE-P Connections, a patient advocacy organization supporting families caring for those severely affected by DEEs, launched The Inchstone Project to address this problem. This team science research collaborative unites researchers, pharmaceutical companies, advocates and others around a shared vision of adapting existing tools to reliably capture the small but important changes in skills in those severely affected by DEEs. To better understand these gaps, the Inchstone team conducted a pilot study with 10 children with SCN2A DEE. The team administered multiple assessments to explore how to adapt the tools to better capture the abilities and growth of this population. The team also completed a comprehensive DEE-wide survey with over 270 caregivers documenting their children's abilities and priorities for their improvement from new treatments, helping to document how existing tools may be updated to better capture what's most important to families and measure their children's small but important improvements over time. The Inchstone Project is on course to assure those profoundly impacted by DEEs are meaningfully included in clinical trials by establishing trusted and reliable non-seizure measurement tools.

Diagnostic certainty during in-person and telehealth autism evaluations.

Background: Many diagnostic evaluations abruptly shifted to telehealth during the COVID-19 pandemic; however, little is known about the impact on diagnosis patterns for children evaluated for autism spectrum disorder (ASD). The purpose of this clinical research study was to examine (1) the frequency of diagnoses evaluated beyond ASD; (2) the frequency of diagnoses made, including ASD; and (3) clinician diagnostic certainty for all diagnoses evaluated for children who received an evaluation due to primary concerns about ASD via telehealth during the pandemic compared to those evaluated in person before the pandemic at an ASD specialty clinic. Methods: The sample included 2192 children, 1-17 years (M = 6.5 years; SD = 3.9), evaluated by a physician/psychologist at an ASD specialty center. A total of 649 children were evaluated in-person September 1, 2019-March 13, 2020 (pre-pandemic) and 1543 were evaluated via telehealth March 14, 2020-July 26, 2021 (during pandemic). Upon completion of each evaluation, clinicians provided a final diagnostic determination (i.e., "Yes," "No," "Possible," or "Not Assessed") for the following DSM-5 conditions: ASD, attention-deficit/hyperactivity disorder (ADHD), intellectual developmental disorder (IDD), anxiety (ANX), depression (DEP), and behavioral disorder (BD). "Possible" indicated lower certainty and the diagnosis was not provided. "Not Assessed" indicated the disorder was not evaluated. Results: Diagnostic certainty for ASD and ADHD was lower and clinicians evaluated for and made diagnoses of IDD less often during evaluations that occurred via telehealth during the pandemic versus in person before the pandemic. DEP and BD were diagnosed more frequently, diagnostic certainty of DEP was lower, and no differences in the frequency of ANX diagnoses emerged during evaluations conducted via telehealth during the pandemic compared to those conducted in person before the pandemic. Conclusions: Differences emerged in the frequency of diagnoses evaluated and made and diagnostic certainty for evaluations conducted via telehealth during the pandemic compared to in person before the pandemic, which likely impacted patients and reflect real-word challenges. Future work should examine whether these patterns are generalizable and the mechanisms that contribute to these differences.

Caregiver and family functioning after pediatric disorder of consciousness: telephone-based outcome assessment.

OBJECTIVE: Examine initial feasibility/utility of a telephone-administered measure in describing impact of child health on caregiver/family functioning in patients with a history of a disorder of consciousness (DoC) due to severe-acquired brain injury (ABI). METHOD: Caregivers of patients admitted at least 1 year prior for inpatient rehabilitation with DoC completed a battery of measures administered via telephone examining the impact of child health on caregiver/family functioning (Pediatric Quality of Life Family Impact Module; PedsQL-FIM) and child functioning. RESULTS: Forty-one caregivers of unique patients (age = 5-22 years; M = 14.9, SD = 5.1; 63% male; time since injury = 1-18 years; M = 5.3; SD = 4.2) completed the telephone measures. PedsQL-FIM floor and ceiling effects were minimal (administration time = 5-16 min, M = 7.4; SD = 2.8). Family functioning was lowest in Daily Activities and highest in Family Relationships. Relative to caregivers of patients with mild-severe ABI, caregivers reported lower caregiver/family functioning. Correlations were moderate between child functioning and caregiver/family functioning on some PedsQL-FIM scales. CONCLUSIONS: Within this relatively small convenience sample, results indicate the PedsQL-FIM administered via telephone is feasible and useful in describing the impact of child health on caregiver/family functioning long after DoC associated with ABI. Future studies are needed to understand factors contributing to caregiver/family functioning to inform targeted interventions.

FDA Patient-Focused Drug Development Guidances: Considerations for Trial Readiness in Rare Developmental and Epileptic Encephalopathies

Developmental and epileptic encephalopathies (DEE) are rare, often monogenic neurodevelopmental conditions. Most affected individuals have refractory seizures. All have multiple severe impairments which can be as life-limiting as or more limiting than the seizures themselves. Mechanism- and gene-targeted therapies for these individually rare, genetic conditions hold hope for treatment, amelioration of disease expression, and even cure. The near absence of fit-for-purpose (FFP) clinical outcome assessments (COA) to establish the benefits for nonseizure outcomes of these new therapies in clinical trials poses significant challenges to drug development. The Food and Drug Administration Patient-Focused Drug Development guidance series provides direction for how to overcome these challenges and to ensure FFP measures are available for trials. The goal is to have measures that address outcomes of importance to patients and caregivers, reliably and accurately measure the outcome in the spectrum of abilities for the target disease, and are sensitive to meaningful change over time. The guidances identify 3 primary strategies: (1) directly adopting and implementing available outcome measures; (2) creating measures de novo; and (3) a middle path of adapting or modifying existing measures. Emphasized throughout the guidances is the indispensable and extensive role of the patient or caregiver to assuring the goal of having fit measures is achieved. This review specifically considers the difficulties of adopting available COAs in severely impaired patient groups and ways to adapt or modify existing COAs to be FFP as encouraged in the guidances. Adaptations include alternative scoring, use of assessments in out-of-intended age ranges, and modifications for individuals with sensory or motor impairments. Some additional considerations that may facilitate achieving adequate clinical outcome measures, especially for rare diseases, include use of personalized endpoints, merging of existing COAs, and developing a consortium of rare DEE advocates and researchers to ensure fitness of adapted COAs across multiple rare disease groups. The FDA guidances help ensure that clinical trials targeting nonseizure outcomes, especially in severely impaired populations, will have adequately valid and sensitive outcome measures. This in turn will strengthen the ability of trials to provide informative tests of whether treatments provide meaningful therapeutic efficacy.

What does better look like in individuals with severe neurodevelopmental impairments? A qualitative descriptive study on SCN2A-related developmental and epileptic encephalopathy.

PURPOSE: There are limited psychometric data on outcome measures for children with Developmental Epileptic Encephalopathies (DEEs), beyond measuring seizures, and no data to describe meaningful change. This study aimed to explore parent perceptions of important differences in functional abilities that would guide their participation in clinical trials. METHODS: This was a descriptive qualitative study. Semi-structured one-on-one interviews were conducted with 10 families (15 parent participants) with a child with a SCN2A-DEE [8 male, median (range) age 7.5 (4.5-21)] years. Questions and probes sought to understand the child's functioning across four domains: gross motor, fine motor, communication, and activities of daily living. Additional probing questions sought to identify the smallest differences in the child's functioning for each domain that would be important to achieve, if enrolling in a traditional therapy clinical trial or in a gene therapy trial. Data were analyzed with directed content analysis. RESULTS: Expressed meaningful differences appeared to describe smaller developmental steps for children with more limited developmental skills and more complex developmental steps for children with less limited skills and were different for different clinical trial scenarios. Individual meaningful changes were described as important for the child's quality of life and to facilitate day-to-day caring. CONCLUSION: Meaningful change thresholds have not been evaluated in the DEE literature. This study was a preliminary qualitative approach to inform future studies that will aim to determine quantitative values of change, applicable to groups and within-person, to inform interpretation of specific clinical outcome assessments in individuals with a DEE.

To confirm your appointment, please press one: Examining demographic and health system interface factors that predict missed appointments in a pediatric outpatient neuropsychology clinic.

Objective: Missed patient appointments have a substantial negative impact on patient care, child health and well-being, and clinic functioning. This study aims to identify health system interface and child/family demographic characteristics as potential predictors of appointment attendance in a pediatric outpatient neuropsychology clinic. Method: Pediatric patients (N = 6,976 across 13,362 scheduled appointments) who attended versus missed scheduled appointments at a large, urban assessment clinic were compared on a broad array of factors extracted from the medical record, and the cumulative impact of significant risk factors was examined. Results: In the final multivariate logistic regression model, health system interface factors that significantly predicted more missed appointments included a higher percentage of previous missed appointments within the broader medical center, missing pre-visit intake paperwork, assessment/testing appointment type, and visit timing relative to the COVID-19 pandemic (i.e. more missed appointments prior to the pandemic). Demographic characteristics that significantly predicted more missed appointments in the final model included Medicaid (medical assistance) insurance and greater neighborhood disadvantage per the Area Deprivation Index (ADI). Waitlist length, referral source, season, format (telehealth vs. in-person), need for interpreter, language, and age were not predictive of appointment attendance. Taken together, 7.75% of patients with zero risk factors missed their appointment, while 22.30% of patients with five risk factors missed their appointment. Conclusions: Pediatric neuropsychology clinics have a unique array of factors that impact successful attendance, and identification of these factors can help inform policies, clinic procedures, and strategies to decrease barriers, and thus increase appointment attendance, in similar settings.

Severe behavior problems in SYNGAP1-related disorder: A summary of 11 consecutive patients in a tertiary care specialty clinic.

SYNGAP1-related disorder (SYNGAP1-RD) is a neurodevelopmental disorder that is commonly associated with epilepsy, autism spectrum disorder (ASD), and disruptive behaviors. In this study, behavior problems in 11 consecutive patients with SYNGAP1-RD are described and quantified based on a behavioral screening conducted within the context of a multi-disciplinary tertiary care specialty clinic visit. The behavioral phenotype was then compared to published samples of behavior problems in ASD and other genetic cause of epilepsy occurring in the context of neurodevelopmental disorders using results from the Aberrant Behavior Checklist-Community (ABC-C), an empirically derived outcome measure. We report common antecedent and consequent events surrounding problem behavior across individuals. Additionally, we report on the management approach of caregivers and the impact of problem behaviors on the family. Our results suggest a number of commonalities between behavioral profiles in SYNGAP1-RD with ASD and other genetic causes of developmental and epileptic encephalopathies, and also highlight severe behavior problems as a specific behavioral phenotype of SYNGAP1-RD.

Case report: Off-label use of low-dose perampanel in a 25-month-old girl with a pathogenic SYNGAP1 variant.

Introduction: Preclinical studies in a mouse model have shown that SYNGAP1 haploinsufficiency results in an epilepsy phenotype with excessive GluA2-AMPA insertion specifically on the soma of fast-spiking parvalbumin-positive interneurons associated with significant dysfunction of cortical gamma homeostasis that was rescued by perampanel (PER), an AMPA receptor blocker. In this single case, we aimed to investigate the presence of dysregulated cortical gamma in a toddler with a pathogenic SYNGAP1 variant and report on the effect of low-dose PER on electroencephalogram (EEG) and clinical profile. Methods: Clinical data from physician's clinic notes; genetic testing reports; developmental scores from occupational therapy, physical therapy, speech and language therapy evaluations; and applied behavioral analysis reports were reviewed. Developmental assessments and EEG analysis were done pre- and post-PER. Results: Clinically, the patient showed improvements in the developmental profile and sleep quality post-PER. EEG spectral power analysis in our patient revealed a loss of gamma power modulation with behavioral-state transitions similar to what was observed in Syngap1+/- mice. Furthermore, the administration of low-dose PER rescued the dysfunctional cortical gamma homeostasis, similar to the preclinical study. However, as in the epileptic mice, PER did not curb epileptiform discharges or clinical seizures. Conclusion: Similar to the Syngap1+/- mice, cortical gamma homeostasis was dysregulated in the patient. This dysfunction was rescued by PER. These encouraging results necessitate further validation of gamma dysregulation as a potential translational EEG biomarker in SYNAP1-DEE. Low-dose PER can be explored as a therapeutic option through clinical trials.

Association Between Neighborhood Deprivation and Child Cognition in Clinically Referred Youth.

OBJECTIVE: When socioeconomic status is measured at the individual and/or family level, it has long been associated with cognition in children. However, the association between neighborhood deprivation, an index of community-level socioeconomic status, and child cognition is not fully understood. The goal of this study was to investigate (1) the relationship between neighborhood deprivation and child cognitive functioning and (2) whether child age moderates the relationship between cognitive functioning and neighborhood deprivation. METHODS: This study included 9878 children, ages 3 through 17 years (M = 10.4 yrs, SD = 3.4 yrs). Data were gathered from children referred for and evaluated at an urban, outpatient neuropsychology assessment clinic between 2006 and 2022, located in the Mid-Atlantic region of the United States. Neighborhood socioeconomic status was measured at the census block level using the Area Deprivation Index composite. RESULTS: There was a 20-point median difference in overall intelligence between the neighborhoods with the lowest and highest levels of deprivation. Overall intelligence and verbal comprehension, compared with working memory, fluid reasoning, and processing speed, demonstrated the strongest negative association with neighborhood deprivation (all p < 0.05). Older children had lower overall intelligence scores compared with younger children in neighborhoods with high levels of deprivation ( p < 0.01), suggesting a cumulative influence of poverty exposure. CONCLUSION: This study demonstrates the stark disparities in child cognitive functioning across levels of neighborhood deprivation. Findings support the importance of access to early interventions and services that promote intellectual growth and verbal capacity among children who live in neighborhoods with great deprivation.

Prevalence of gastrointestinal symptoms among autistic individuals, with and without co-occurring intellectual disability.

Gastrointestinal symptoms (GI) are very common among individuals on the autism spectrum. Prior research reports mixed findings regarding whether individuals with autism and co-occurring intellectual disability (ID) have elevated risk of gastrointestinal symptoms relative to individuals with autism alone. GI symptoms can be challenging to assess in individuals with autism spectrum disorder (ASD) and/or ID given challenges with language, communication, and interoception. Prior research has tended to only include individuals with documented presence or absence of GI symptoms or conditions, that is, to exclude observations in which there is uncertainty regarding presence of GI symptoms. Therefore, none of the prior autism studies reported the association between ID and the certainty regarding presence or absence of GI symptoms. The objective of this study was to examine differences in parental certainty and odds of reporting gastrointestinal signs and symptoms among children on the autism spectrum, with and without intellectual disability. Participants were 308 children (36% ID) with a clinical diagnosis of autism spectrum disorder (6-17 years). Parents endorsed whether their child had experienced or displayed a range of signs or symptoms related to GI problems in the past 3 months. Parents of autistic children with ID were less certain about the presence of more subjective symptoms, including abdominal pain, nausea, and bloating. Conversely, certainty regarding more objective signs (e.g., constipation, diarrhea, spitting up, etc.) was not significantly different. More accurate measures for GI signs/symptoms are needed for this population.

The Interaction of Age at Diagnosis and Neurological Risk Predicts Adaptive Functioning Changes in Pediatric Brain Tumor Survivors.

T-tests from 42 brain tumor patients showed adaptive functioning below normative means at both time points (test interval M=2.60y, SD=1.32). Neurological risk, time since diagnosis,age at diagnosis, age at evaluation, and time since evaluation were correlated with specific adaptive skills. There was a main effect of age at diagnosis, age at assessment, time since diagnosis, and neurological risk as well as an interaction of age at diagnosis × neurological risk for specific adaptive skills. Results highlight the importance of considering the relationship between developmental and medical variables on changes in adaptive functioning in survivors of pediatric brain tumors.

Clinical utility of teleneuropsychology among pediatric patients with broadly average and low intellectual functioning.

The reliability of teleneuropsychology (teleNP) within pediatric populations, particularly those with low intellectual functioning (LIF; i.e., Intellectual Quotient <80), is largely unknown. This repeated-measures study compared performance on WISC-V and WAIS-IV subtests administered in-person before the COVID-19 pandemic and via teleNP during the pandemic in individuals with LIF versus broadly average (BA) intellectual functioning in a clinically referred pediatric cohort. Data were collected from a retrospective chart review of 35 pediatric patients who underwent in-person neuropsychological evaluation at an academic medical center before the pandemic (Mage = 10.10 years, SD = 2.93) and videoconference teleNP assessment during the pandemic (Mage = 13.47 years, SD = 2.88). Participants completed the Similarities, Matrix Reasoning, and Digit Span subtests from the WISC-V or WAIS-IV at both time points. After controlling for test-retest time interval, partial correlations showed relatively strong associations in test-retest performance across subtests in the whole sample and among the subset of LIF patients. Distribution of significant reliable change indices (RCI) between the LIF and BA groups were similar. Strong correlations were observed between performances on select Wechsler subtests administered in-person and via teleNP. Results lend initial support toward the utility of teleNP administration of these measures in children with a broad range of intellectual functioning.

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.

Tumor region associated with specific processing speed outcomes.

OBJECTIVE: Processing speed (PS) is a vulnerable cognitive skill in pediatric cancer survivors as a consequence of treatments and, less consistently, tumor region. Studies conventionally examine graphomotor PS; emerging research suggests other aspects of PS may be impacted. This study examined types of PS in pediatric brain tumor survivors to determine which aspects are impaired. Given discordance across studies, we additionally investigated the relationship between brain region and PS. METHODS: The sample consisted of 167 pediatric brain tumor patients (100 supratentorial). PS (oral naming, semantic fluency, phonemic fluency, motor speed, graphomotor speed, visual scanning) was gathered via clinical neuropsychological assessment. To examine PS by region, infratentorial and supratentorial groups were matched on age at diagnosis and neuropsychological assessment, and time since diagnosis. RESULTS: The whole sample performed below normative means on measures of oral naming (p < .001), phonemic fluency (p < .001), motor speed (p = .03), visual scanning (p < .001), and graphomotor speed (p < .001). Only oral naming differed by region (p = .03), with infratentorial tumors associated with slower performance. After controlling for known medical and demographic risk factors, brain region remained a significant predictor of performance (p = .04). Among the whole sample, greater than expected proportions of patients with impairment (i.e., >1 standard deviation below the normative mean) were seen across all PS measures. Infratentorial tumors had higher rates of impairments across all PS measures except phonemic fluency. CONCLUSIONS: Results indicate pediatric brain tumor survivors demonstrate weaknesses in multiple aspects of PS, suggesting impairments are not secondary to peripheral motor slowing alone. Additionally, tumor region may predict some but not all neuropsychological outcomes in this population.

Outcome Measurement in Children With a History of Disorders of Consciousness After Severe Brain Injury: Telephone Administration of the Vineland Adaptive Behavior Scales, Third Edition, and Glasgow Outcome Scale-Extended Pediatric Revision.

OBJECTIVES: Examine initial feasibility and utility of a battery of measures administered via telephone interview with a caregiver for describing long-term outcomes in individuals with a history of disorders of consciousness (DoC) after pediatric acquired brain injury (ABI). DESIGN: Cross-sectional. SETTING: Caregiver interview administered via telephone. PATIENTS: Convenience sample admitted to an inpatient pediatric neurorehabilitation unit with DoC after ABI at least 1 year prior to assessment (n = 41, 5-22 yr old at assessment). INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The Vineland Adaptive Behavior Scales, Third Edition (Vineland-3), and Glasgow Outcome Scale-Extended Pediatric Revision (GOS-E Peds) were examined. Administration time of the Vineland-3 ranged from 13 to 101 minutes (m = 50) and the GOS-E Peds ranged from 2 to 10 minutes (m = 3). Vineland-3 Adaptive Behavior Composite (ABC) ranged from standard scores (SSs) of 20 (exceptionally low) to 100 (average) and GOS-E Peds scores ranged from 3 (i.e., upper moderate disability) to 7 (vegetative state). Lower adaptive functioning on the Vineland-3 ABC was strongly associated with greater disability on the GOS-E Peds (r = -0.805). On the Vineland-3 ABC, 19.5% earned the lowest possible score, whereas 12.2% obtained the lowest possible score for survivors on the GOS-E Peds; only 7.3% earned lowest scores on both measures. CONCLUSIONS: The Vineland-3 and GOS-E Peds were feasibly administered by telephone and were complementary in this cohort; the GOS-E provided a quick and easy measure of gross functional outcome, whereas the Vineland-3 took longer to administer but provided a greater level of detail about functioning. When both measures were used together, the range and variability of scores were maximized.

Can We Expand the Pool of Youth Who Receive Telehealth Assessments for ADHD? Covariates of Service Utilization.

BACKGROUND: During the COVID-19 pandemic, telehealth became widely utilized for healthcare, including psychological evaluations. However, whether telehealth has reduced or exacerbated healthcare disparities for children with Attention-Deficit/Hyperactivity Disorder (ADHD) remains unclear. METHODS: Data (race, ethnicity, age, insurance type, ADHD presentation, comorbidities, and distance to clinic) for youth with ADHD (Mage = 10.97, SDage = 3.42; 63.71% male; 51.62% White) were extracted from the medical record at an urban academic medical center. Three naturally occurring groups were compared: those evaluated in person prior to COVID-19 (n =780), in person during COVID-19 (n = 839), and via telehealth during COVID-19 (n = 638). RESULTS: Children seen via telehealth were significantly more likely to be older, White, have fewer comorbid conditions, and live farther from the clinic than those seen in person. CONCLUSIONS: The current study suggests that telehealth has not eliminated barriers to care for disadvantaged populations. Providers and institutions must take action to encourage telehealth use among these groups.

Working Memory and Processing Speed Predict Math Skills in Pediatric Brain Tumor Survivors.

OBJECTIVE: Childhood brain tumor (BT) survivors are at risk for working memory (WM) and processing speed (PS) deficits, which impact other cognitive domains. This study aimed to characterize WM, PS, and untimed mathematics calculation performance in pediatric BT survivors at least 2 years post-diagnosis, identify medical factors associated with deficits in mathematics, and examine whether WM and/or PS predict mathematics performance in this clinical sample. METHODS: Retrospective data were gathered from 72 BT survivors between 7 and 21 years of age ( M =13.64 y, SD =4.01 y) for a clinical neuropsychologic evaluation. All participants completed Wechsler measures of WM and PS and a measure of untimed mathematics calculation. RESULTS: WM, PS, and the mathematics calculation were significantly lower than the normative mean. Math scores were not correlated with any of the examined medical factors. PS was negatively correlated with the Neurological Predictor Scale and positively correlated with age at diagnosis. Both WM and PS were associated with math outcomes and accounted for 30.4% and 19.2% of the variance, respectively. CONCLUSIONS: The findings indicate that WM and PS contribute to mathematics performance in pediatric BT survivors. Examining mathematics performance should be a part of clinical neuropsychological evaluations. Interventions to improve mathematics performance in this population should also focus on WM and compensatory strategies for slowed PS.

Characterizing and comparing adaptive and academic functioning in children with low average and below average intellectual abilities.

Objective The recent American Academy of Clinical Neuropsychology (AACN) consensus statement on uniform labeling of performance test scores places children who were previously characterized as having "borderline intellectual functioning" within the low average (LA; full scale intellectual quotient (FSIQ) between 80-89) or below average (BA; FSIQ between 70-79) categories. Given limited research examining functional differences across FSIQ groups using AACN's uniform labeling, this study examined adaptive and academic functioning by FSIQ group in youth referred for (neuro)psychological evaluation. Primary comparisons of interest were between LA and BA groups. MethodParticipants were 2,516 children between 6 to 13 years with standardized measures of intellectual, adaptive, and academic functioning. Participants were included if their FSIQ ranged from average to exceptionally low. Group differences in adaptive functioning and academic achievement were examined. ResultsThe LA group did not differ from the BA group in overall adaptive functioning and several domains of adaptive functioning (i.e. social, practical), but demonstrated slightly stronger adaptive skills in the conceptual domain. While the LA group evidenced slightly better word reading and math computation scores than the BA group, these statistically significant differences were not clinically -meaningful. ConclusionsIn this clinically referred sample, children with LA and BA intellectual abilities demonstrated similar adaptive skills, but slightly different academic achievement. Both groups demonstrated lower adaptive and academic functioning than children with average range FSIQs. These results suggest that adaptive functioning should be assessed during (neuro)psychological evaluations even when children do not have extremely low FSIQs.