Evidence-Informed Milestones for Developmental Surveillance Tools.

The Centers for Disease Control and Prevention's (CDC) Learn the Signs. Act Early. program, funded the American Academy of Pediatrics (AAP) to convene an expert working group to revise its developmental surveillance checklists. The goals of the group were to identify evidence-informed milestones to include in CDC checklists, clarify when most children can be expected to reach a milestone (to discourage a wait-and-see approach), and support clinical judgment regarding screening between recommended ages. Subject matter experts identified by the AAP established 11 criteria for CDC milestone checklists, including using milestones most children (≥75%) would be expected to achieve by specific health supervision visit ages and those that are easily observed in natural settings. A database of normative data for individual milestones, common screening and evaluation tools, and published clinical opinion was created to inform revisions. Application of the criteria established by the AAP working group and adding milestones for the 15- and 30-month health supervision visits resulted in a 26.4% reduction and 40.9% replacement of previous CDC milestones. One third of the retained milestones were transferred to different ages; 67.7% of those transferred were moved to older ages. Approximately 80% of the final milestones had normative data from ≥1 sources. Social-emotional and cognitive milestones had the least normative data. These criteria and revised checklists can be used to support developmental surveillance, clinical judgment regarding additional developmental screening, and research in developmental surveillance processes. Gaps in developmental data were identified particularly for social-emotional and cognitive milestones.

Toileting Resistance Among Preschool-Age Children with and Without Autism Spectrum Disorder.

OBJECTIVE: Children with autism spectrum disorder (ASD) may achieve continence later than other children. Little is known about factors associated with toileting resistance in children with ASD and other developmental delays/disabilities (DD). We sought to describe toileting resistance in children with ASD and DD and those from the general population (POP) and identify factors associated with toileting resistance in children with ASD and DD. METHOD: Families and children aged 24 to 68 months were enrolled in the Study to Explore Early Development, a multisite case-control study on ASD. Children with ASD (N = 743) and DD (N = 766) and those from the POP (N = 693) who were 48 months or older were included in this study. Parents reported toileting resistance, gastrointestinal issues, behavior problems, and ASD symptoms in their children. Children completed an in-person evaluation to determine ASD status and developmental level. RESULTS: Toileting resistance was more common among children with ASD (49.1%) than children with DD (23.6%) and those from the POP (8.0%). Diarrhea and deficits in social awareness were significantly associated with toileting resistance in children with ASD and DD. Constipation, expressive language delays, and low social motivation were significantly associated with toileting resistance only in children with ASD; very low visual reception skills and oppositional behaviors were significantly associated with toileting resistance in only children with DD (all p ≤ 0.05). CONCLUSION: Evaluating gastrointestinal issues, developmental delays, and social deficits before toileting training may help identify children with atypical development who are likely to present with toileting resistance. These evaluations can be incorporated into health supervision visits.

Psychometric Assessment of Pilot Language and Communication Items on the 2018 and 2019 National Survey of Children's Health.

OBJECTIVE: Until recently, normative data on language and communication development among children in the United States have not been available to inform critical efforts to promote language development and prevent impairments. This study represents the first psychometric assessment of nationally representative data derived from a National Survey of Children's Health (NSCH) pilot measure of language and communication development among children ages 1 to 5 years. METHODS: We analyzed 14,573 parent responses to language and communication items on the 2018 and 2019 NSCH to evaluate whether the newly added 11 items represent a single latent trait for language and communication development and to determine normative age of success on each item. We applied weighted, one-parameter Item Response Theory to rate and cluster items by difficulty relative to developmental language ability. We examined differential item functioning (DIF) using weighted logistic regression by demographic factors. RESULTS: Together, exploratory factor analysis resulting in a single factor > 1 and explaining 93% of the variance and positive correlations indicated unidimensionality of the measure. Item characteristic curves indicated groupings were overall concordant with proposed milestone ages and representative of an approximate 90% success cut-point by child age. Indicated normative age cut-points for 3 of the items differed slightly from proposed milestone ages. Uniform DIF was not observed and potential nonuniform DIF was observed across 5 items. CONCLUSIONS: Results have the potential to enhance understanding of risk and protective factors, inform efforts to promote language and communication development, and guide programmatic efforts on early detection of language delays.

CE: From the CDC: Understanding Autism Spectrum Disorder.

Autism spectrum disorder (ASD) is a condition characterized by impaired social communication as well as restricted and repetitive behaviors. It is considered a neurodevelopmental disorder because it is associated with neurologic changes that may begin in prenatal or early postnatal life, alters the typical pattern of child development, and produces chronic signs and symptoms that usually manifest in early childhood and have potential long-term consequences. In past decades, autism was conceptualized as a strictly defined set of behaviors, usually accompanied by intellectual impairment. Today, it is recognized as a spectrum, ranging from mild to severe, in which behaviors vary substantially and the majority of children who fall on the spectrum have average to above average intellectual ability. Here, the authors discuss the risk factors for ASD, its epidemiology, common concurrent conditions, evaluation, diagnosis, treatments, and outcomes.

Increasing Early Childhood Screening in Primary Care Through a Quality Improvement Collaborative.

OBJECTIVES: Multiple early childhood screenings are recommended, but gaps persist in implementation. Our aim for this project was to improve screening, discussion, referral, and follow-up of development, autism spectrum disorder (ASD), maternal depression, and social determinants of health (SDoH) to 90% by July 2018. METHODS: This 1-year national quality improvement collaborative involved 19 pediatric primary care practices. Supported by virtual and in-person learning opportunities, practice teams implemented changes to early childhood screening. Monthly chart reviews were used to assess screening, discussion, referral, and follow-up for development, ASD, maternal depression, and SDoH. Parent surveys were used to assess parent-reported screening and referral and/or resource provision. Practice self-ratings and team surveys were used to assess practice-level changes. RESULTS: Participating practices included independent, academic, hospital-affiliated, and multispecialty group practices and community health centers in 12 states. The collaborative met development and ASD screening goals of >90%. Largest increases in screening occurred for maternal depression (27% to 87%; +222%; P < .001) and SDoH (26% to 76%; +231%; P < .001). Statistically significant increases in discussion of results occurred for all screening areas. For referral, significant increases were seen for development (53% to 86%; P < .001) and maternal depression (23% to 100%; P = .008). Parents also reported increased screening and referral and/or resource provision. Practice-level changes included improved systems to support screening. CONCLUSIONS: Practices successfully implemented multiple screenings and demonstrated improvement in subsequent discussion, referral, and follow-up steps. Continued advocacy for adequate resources to support referral and follow-up is needed to translate increased screening into improved health outcomes.

The public health response to the COVID-19 pandemic for people with disabilities.

With the rapidly changing landscape of the COVID-19 outbreak, how to best address the needs and continue to protect the health and well-being of people with disabilities (PwDs) is a global public health priority. In this commentary we identify three public health areas of ongoing need and offer possible strategies to address each. These areas include: the types of data that would help clarify risks for PwDs and help assure their safety long term; the prevention, treatment and mitigation measures for PwDs that are needed through the duration of the outbreak; and the issues of equity in access to and quality of medical care for PwDs. Because of the rapid nature of the public health response, it is critical to reassess and readjust our approach to best address the needs of PwDs in the months and years to come and to incorporate these new practices into future emergency preparedness responses.

Improving Developmental Screening, Discussion, and Referral in Pediatric Practice.

Objective. Although pediatricians' use of standardized screening tools for identifying developmental delays has increased, only 63% of pediatricians report performing standardized screening as recommended. The purpose of the current quality improvement project was to improve developmental monitoring, screening, and referral for developmental concerns by pediatricians. Method. Twenty-eight pediatricians completed an in-person meeting, monthly webinars, and individualized feedback from an Expert Work Group on progress across a 3-month action period. Results. Statistically significant increases were observed in rates of autism screening, discussions of screening results with families, and referral following abnormal results. There was no statistically significant change in rates of general developmental screening. Comparing self-report with record review, pediatricians overestimated the extent to which they conducted discussion and referral. Conclusions. Universal screening for all children has yet to be achieved. The current project supports that practice-based improvements can be made and delineates some of the routes to success.

State Variability in Diagnosed Conditions for IDEA Part C Eligibility.

An infant or toddler can begin the process of receiving Part C early intervention services by having a diagnosed condition with a high probability of developmental delay (Individuals with Disabilities Education Improvement Act, 2004). How states define those diagnosed conditions that begin the initiation process varies widely. Lists of diagnosed conditions were collected from state Part C websites and Part C coordinators for a descriptive analysis. Across 49 states, the District of Columbia, and 4 territories, a final list of 620 unique conditions was compiled. No single condition was listed by all jurisdictions. Hearing impairment was the condition listed by the most states (n = 38), followed by fetal alcohol syndrome (n = 34). Of the 620 conditions, 168 (27%) were listed by only 1 state, 554 (89%) were listed by fewer than 10 states, and 66 (11%) were listed by 10 or more states. Of these 66 conditions, 47 (71%) were listed by fewer than 20 states. Most of these 66 conditions (n = 48; 72.7%) had a prevalence of "very rare or rare," 8 (12%) were "common," 6 (9%) were "very common," and 4 (6.1%) were "unknown." The wide heterogeneity in the number and type of diagnostic conditions listed across states should be further investigated as it may represent imbalances in children with diagnosed conditions gaining access to Part C evaluations and individualized family service plans and potentially the services themselves across states. In addition, providing ready access to lists of diagnosed conditions is a simple step that could help states and Part C programs facilitate access to services.

Neurobehavioral Disorder Associated With Prenatal Alcohol Exposure.

Children and adolescents affected by prenatal exposure to alcohol who have brain damage that is manifested in functional impairments of neurocognition, self-regulation, and adaptive functioning may most appropriately be diagnosed with neurobehavioral disorder associated with prenatal exposure. This Special Article outlines clinical implications and guidelines for pediatric medical home clinicians to identify, diagnose, and refer children regarding neurobehavioral disorder associated with prenatal exposure. Emphasis is given to reported or observable behaviors that can be identified as part of care in pediatric medical homes, differential diagnosis, and potential comorbidities. In addition, brief guidance is provided on the management of affected children in the pediatric medical home. Finally, suggestions are given for obtaining prenatal history of in utero exposure to alcohol for the pediatric patient.