Journal of Developmental and Behavioral Pediatrics最新文献

Objective: Despite long-standing racial and ethnic disparities in autism spectrum (AS) diagnosis, recent research suggests that overall, greater numbers of Black and Latine children are now diagnosed with AS as compared with non-Latine White (NLW) children in some US regions. However, gaps remain in the equitable detection of Black and Latine children with AS without significant developmental impairment. The objective of this study was to determine whether the clinical profiles of young children evaluated for AS across a statewide system of early autism diagnosis in Indiana vary by race and ethnicity.

Methods: We examined racial and ethnic differences in: (1) AS symptom severity, (2) developmental functioning, (3) adaptive functioning, and (4) behavior problems in a sample of 147 children, aged 14 to 48 months (M = 2.6 years), referred for AS evaluation.

Results: Clinical profiles of young children evaluated differed significantly by race and ethnicity, with Black and Latine children exhibiting lower developmental ( p = 0.008) and adaptive abilities ( p = 0.01) and higher AS symptoms ( p = 0.03) as compared with NLW children.

Conclusion: Potential explanations for findings include racial and ethnic differences in family and community awareness and knowledge about AS and follow-through on evaluation referral, both driven by social determinants of health (SDOH) affecting minoritized children. Bias in screening and assessment instruments and clinician surveillance, screening, and referral practices may also underlie differences in clinical profiles of children evaluated. Future research is needed to understand the SDOH that influence AS detection and diagnosis to improve equitable access to early diagnosis and intervention.

Objective: To identify the impact of social determinants on the experiences of children with disabilities and their families during the COVID-19 pandemic from the perspective of parents/guardians.

Methods: A mixed-methods study engaged parents/guardians of children with Individualized Education Programs (IEPs) in July to August 2021 at a developmental/behavioral pediatrics clinic in 1 urban academic medical center. All parents/guardians completed study-specific surveys on experiences and impact of COVID-19. A subset completed semi-structured interviews. Analysis included descriptive statistics and Fisher exact tests for survey questions and thematic analysis to code interviews and identify themes. Results were corroborated by experts in developmental/behavioral pediatrics and special education.

Results: Participants included 24 parents/guardians representing 27 children (mean = 7.37 years). A majority attended public school (78%) and identified as non-White (78%). Most commonly, the children's disabilities were autism (52%), attention-deficit hyperactivity disorder (37%), and speech/language impairment (33%). The services received by children most commonly were speech/language (89%) and physical/occupational (70%) therapies. Five themes emerged about the impact of social determinants on experiences during COVID-19 related to: adapting to disruption of routines, attendance/engagement in learning, interruption of IEP services, support for children and families, and challenges with technology.

Conclusion: Social determinants, such as housing, income, insurance, and quality of education, affected the experiences of families and their ability to adapt to the needs of children with disabilities in the setting of COVID-19 pandemic-related changes.

Objective: Medical providers report barriers that prevent them from discussing sexual health with patients with autism spectrum disorder (ASD). No investigations have examined the perspectives of adults with ASD about their sexual health care experiences.

Methods: Twenty-five verbal young adults diagnosed with ASD and 40 young adults without ASD participated. An 8-item self-report survey assessed frequency of health care visits, age when sexual health was first discussed, and frequency/content of discussions with providers.

Results: The likelihood of discussing sexual health topics did not differ by group, χ 2 s < 3.25; p s > 0.07, except sexual victimization, which the ASD group reported having discussed less than the non-ASD group (32% vs 9%), χ 2 (1, N = 57) = 4.36, p = 0.04. Groups did not differ in their reported comfort level discussing sex/sexual health, having a primary care provider, or frequency of visits. The non-ASD group was significantly more likely to have received sexual health counseling (81%) than ASD group (52%), χ 2 (1, N = 58) = 5.33, p = 0.02. Participants in both groups reported having received sexual health information from similar sources except the ASD group was more likely to receive information from parents than the non-ASD group (68% vs 30%), χ 2 (1, N = 65) = 8.99, p = 0.003.

Conclusion: Participants in the ASD and non-ASD groups reported similar comfort levels with sexual health discussions and access to health providers. Yet, the ASD group received less counseling related to sexual health-particularly sexual victimization screening-suggesting that critical information may be missing. Future studies should determine how to help providers overcome barriers to providing young adults with ASD sexual health aligned with their needs.

Objective: To evaluate how community-based experts respond to families seeking therapeutic and educational support services after pediatric genomic sequencing for rare conditions.

Methods: We interviewed 15 experts in the provision of community-based services for children with intellectual differences, developmental differences, or both, as part of a large study examining the utility of exome sequencing.

Results: Interviewees highlighted the complexity of the overall referral and assessment system for therapeutic or educational needs, that genetic diagnoses are secondary to behavioral observations in respect to eligibility for the provision of services, and that social capital drives service acquisition. Although emphasizing that genetic results do not currently provide sufficient information for determining service eligibility, interviewees also highlighted their hopes that genetics would be increasingly relevant in the future.

Conclusion: Genomic results do not usually provide information that directly impacts service provision. However, a positive genomic test result can strengthen evidence for behavioral diagnoses and the future trajectory of a child's condition and support needs. Interviewees' comments suggest a need to combine emerging genetic knowledge with existing forms of therapeutic and educational needs assessment, and for additional supports for families struggling to navigate social and therapeutic services.

Case: Gretta is a 3.5-year-old girl with a history of congenital cytomegalovirus, congenital bilateral profound sensorineural hearing loss (SNHL), and bilateral vestibular dysfunction, resulting in frequent falls. She underwent cochlear implantation at 12 months of age and was diagnosed with autism spectrum disorder at 2.5 years of age.On presentation for follow-up in the developmental-behavioral pediatrics (DBP) clinic, Gretta's mother reports that Gretta has refused to wear her cochlear implants for the past 5 months. Before that, she seemed to enjoy having access to sound and like dancing to music, and her receptive and expressive language skills, including speech, were progressing. Initially, the rejection of her devices occurred only at preschool. When frustrated or overwhelmed, she would close her eyes and remove her devices for up to 5 minutes before allowing them to be reapplied. Over time, this progressed to a complete refusal to wear her devices at school and then at home, rendering her without access to sound and spoken language.Gretta's mood has become sullen, and she is now having tantrums at school. She physically startles when attempts are made to reintroduce her devices. Her ability to participate in classroom learning or interact with her classmates is limited, as she attends a spoken-language-focused preschool program. A board-certified behavioral analyst, hired by the family, recommended that Gretta not be allowed to participate in classroom activities unless she wears her devices. She now becomes visibly anxious even when in the same room as her devices and repetitively states "no implant, no implant." Her mother is worried about her inability to communicate and has "no idea" what may have changed or sparked her initial refusal to wear the devices.What factors would you consider when determining the cause and function of Gretta's refusal to wear the cochlear implants? How would you guide her parents, teachers, and clinicians to ensure the best developmental and behavioral outcomes for her?

Objectives: This study sought to understand the health status of children in foster care; the relationship between their health status and health care utilization; and demographic and placement factors associated with health care utilization.

Methods: To estimate relationships between health status and health care utilization, this study used electronic health records from 4976 children in foster care seen at a children's hospital in the southwestern United States, 2017 to 2020. An algorithm classified patients' health status as nonchronic, noncomplex chronic, or complex chronic. Descriptive statistics were used to describe patients and utilization. The χ 2 , Kruskal-Wallis, and pairwise comparison post hoc tests were used to examine relationships between health status and health care utilization. Zero-inflated negative binomial (ZINB) regression further estimated relationships between health status and health care utilization while factoring in demographic and placement characteristics.

Results: Within the sample, 35.6% had complex chronic health status. Significant differences were found among health status groups in age, gender, ethnicity, and maltreatment exposure. Both nonparametric pairwise comparisons and the ZINB regression model showed that having complex chronic health was associated with higher utilization of all hospital resources: emergency, admission, primary and specialty care, and various therapies, relative to having noncomplex chronic and nonchronic health.

Conclusion: A high percentage of children in foster care had complex chronic health, and these patients used significantly more resources. This study suggests that hospital-based health clinics focused on children in foster care and care coordination may be warranted.

Purpose: The premature infant brain may be particularly vulnerable to anesthesia effects, but there is conflicting evidence on the association between anesthesia exposure and developmental outcomes. Twin studies can control for confounding factors. A twin cohort of premature twins provides internal control of difficulty to measure confounders and delivers added power to a study examining the effects of anesthesia on neurodevelopmental outcomes.

Methods: We conducted a retrospective cohort study of sets of premature twins and multiples born at an academic medical center, in which 1 member of the set was exposed to general anesthesia. The primary outcome was the composite scores using Bayley Scale of Infant and Toddler Development III performed at age 6 months to 18 months. Unpaired and paired analyses were performed with linear regression models, Wilcoxon signed rank test, and Mann-Whitney U test.

Results: We identified 81 children born at less than 32 weeks gestation within 39 sets of twins and 1 set of triplets for a total of 18 paired observations. All of the exposed infants had a single exposure to general anesthesia. There was no significant association between anesthesia exposure and a diagnosis of developmental delay (OR = 0.8; 95% confidence interval, 0.2-3.2; p = 0.99). Regression models demonstrated no association between anesthesia exposure and cognitive (96.67 vs 97.50; p = 0.74), language (98.33 vs 98.61; p = 0.94), or motor (96.25 vs 96.44; p = 0.91) composite Bayley scores. There was no association between duration of anesthesia and the 3 composite Bayley scores ( p = 0.33; p = 0.40; p = 0.74).

Conclusion: Using a premature twin cohort with discordant exposure to anesthesia, our data did not demonstrate any association between anesthesia exposure and developmental delay in this vulnerable population of premature infants.

Objective: An expert commission has proposed the term "profound" autism for children on the spectrum who are minimally verbal or nonverbal and have intellectual disability (ID), behavioral challenges, and co-occurring conditions. It is unknown whether parents' rating of "severe" autism aligns with the definition of "profound" autism. Using the National Survey of Children's Health, we sought to (1) estimate the prevalence of parent-reported severe autism, (2) identify child characteristics that are associated with severe autism, (3) compare health care utilization, and (4) compare caregiver stress and resilience between families of children with severe versus mild/moderate autism.

Methods: Parent responses on the 2018 to 2019 NSCH were used to compare school-age children with parent-reported severe autism and those with mild/moderate autism. Descriptive statistics, χ 2 tests, and logistic regression were used for statistical analysis.

Results: Among parents of 1,368 US children with autism, 10.1% characterized their child's autism as severe, a prevalence of 1 in 333. Parents of children with severe autism were more likely to report ID (45% vs 12.1%, p < 0.001), language delay (88% vs 58.7%, p < 0.001), and difficulties in dressing and bathing (67% vs 19.2%, p < 0.001). Children with severe autism had more behavioral problems and co-occurring conditions but were no more likely to see specialists or receive autism-specific behavioral therapy. Their caregivers reported more stress and less resilience.

Conclusion: The characteristics of "profound" autism and parent-reported "severe" autism significantly overlap, allowing the use of the NSCH for studies of this vulnerable population. Children with profound/severe autism could benefit from more behavioral therapy, specialty care, and family support.

Objective: Because of COVID-19 pandemic social distancing requirements, the in-person Child Adult Relationship Enhancement in Primary Care (PriCARE) positive parenting intervention was adapted for virtual delivery. Objective was to evaluate the efficacy of the virtual PriCARE program to improve parenting capacity, decrease child behavioral problems, and decrease child maltreatment risk.

Methods: Caregivers of children 2 to 6 years old recruited from pediatric primary care were randomized to PriCARE (n = 92) or waitlist control (n = 90). Dysfunctional parenting, positive parenting skills, child behaviors, and child maltreatment risk were measured at baseline and 2 to 3 months after intervention using the Parenting Scale (PS), Dyadic Parent-Child Interaction Coding System (DPICS), Eyberg Child Behavior Inventory (ECBI), and Child Abuse Potential Inventory (CAPI). Kruskal-Wallis test compared median change scores from baseline to follow-up by treatment arm.

Results: Of 182 enrolled caregivers, 92% (168) were mothers and 67% (122) completed study measures at baseline and follow-up. The median decrease (improvement) in total PS score was greater in the PriCARE group compared with the control group (-0.3 [IQR 0.69] vs -0.1 [IQR 0.56], p = 0.028) as was the median decrease (improvement) in ECBI problem score (-3 [IQR 9] vs -1 [IQR 7], p = 0.045) and ECBI intensity score (-9 [IQR 21] vs 0 [IQR 25], p = 0.006). Improvements in 4 positive parenting skills measured by DPICS were greater in the PriCARE group compared with the control group (all p< 0.003). Median decrease in CAPI abuse score did not differ significantly by study arm ( p = 0.055).

Conclusion: The PriCARE virtual adaptation demonstrated promise in promoting positive parenting and decreasing child behavior problems.