To assess the validity of Spanish versions of the Survey of Well-being of Young Children (SWYC) Milestones and the Ages & Stages Questionnaire, Third Edition (ASQ-3), and to document the rates of ...developmental delays in an urban cohort of children with Hispanic parents.
Spanish-speaking families with a child 9 to 60 months of age (N = 991) were initially screened using Spanish translations of the SWYC Milestones and the ASQ-3. A stratified random sample of 494 of these children subsequently received standardized clinical assessment to confirm the presence of developmental delays. Reverse weighting corrected for the selection bias inherent in the stratification scheme.
Fifty-five percent of toddlers (9 to 41 months of age) and 34.8% of preschoolers (42 to 60 months of age) scored in the moderately to severely delayed range, most frequently in language. Sensitivity and specificity for toddlers with severe delays associated with the SWYC were 0.69 and 0.64, respectively, and 0.55 and 0.75 for the ASQ-3. Sensitivity and specificity for preschoolers with severe delays associated with the SWYC were 0.87 and 0.58, respectively, and 0.71 and 0.86 for the ASQ-3.
Although psychometric properties of the Spanish translated versions are not as strong as the English versions, the findings suggest that both the SWYC Milestones and ASQ-3 represent promising tools for identifying Hispanic children with developmental delays. The rate of delays were consistent with other studies showing a high percentage of Hispanic children with developmental delays, most frequently in language skills.
To assess the impact of the COVID-19 pandemic on screening for autism spectrum disorder (ASD) and screening equity among eligible children presenting for well-child care in a large primary care ...pediatric network, we compared rates of ASD screening completion and positivity during the pandemic to the year prior, stratified by sociodemographic factors.
Patients who presented for in-person well-child care at 16 to 26 months between March 1, 2020 and February 28, 2021 (COVID-19 cohort, n = 24,549) were compared to those who presented between March 1, 2019 and February 29, 2020 (pre-COVID-19 cohort, n = 26,779). Demographics and rates of completion and positivity of the Modified Checklist for Autism in Toddlers with Follow-up (M-CHAT/F) were calculated from the electronic health record and compared by cohort using logistic regression models.
Total eligible visits decreased by 8.3% between cohorts, with a greater decline in Black and publicly insured children. In the pre-COVID-19 cohort, 89.0% of eligible children were screened at least once, compared to 86.4% during the pandemic (P < 0.001). Significant declines in screening completion were observed across all sociodemographic groups except among Asian children, with the sharpest declines among non-Hispanic White children. Sociodemographic differences were not observed in screen-positive rates by cohort.
Well-child visits and ASD screenings declined across groups, but with different patterns by race and ethnicity during the COVID-19 pandemic. Findings regarding screen-completion rates should not be interpreted as a decline in screening disparities, given differences in who presented for care. Strategies for catch-up screening for all children should be considered.
This study is a secondary analysis of an observational prospective case series of 50 infants with severe bronchopulmonary dysplasia that describes patient factors associated with the time between ...initial hospital discharge and referral to early intervention (EI) services. It also evaluates associations between (1) timing of EI referral and reception of EI services and (2) early referral to EI and developmental outcomes at 18 to 36 months corrected age. The results demonstrated that a referral from a neonatologist versus a pediatrician was associated with fewer days between discharge and EI referral. Earlier EI referrals were associated with a shorter time to intake evaluation and service initiation. The Bayley-III (Bayley Scales of Infant and Toddler Development, 3rd Edition) scores at 24 months corrected age (n = 28) were not associated with timing of EI referral. In conclusion, an early referral to EI promoted earlier evaluation and initiation of EI services and should be standard for high-risk infants.
Introduction: Few eligible children participate in early intervention (EI) programs. The objective of this study was to determine feasibility and outcomes of a novel patient navigation program on EI ...referrals among a diverse group of at-risk children. Methods: During a 6-month period, a patient navigator was assigned to an urban pediatric clinic to engage families, provide education on early child development and EI, and assist families with completing multidisciplinary evaluations. Families were eligible to participate if they spoke English, had a child <34 months old with a suspected developmental delay, and were referred to EI for evaluation. Families completed measures of demographics, language preference, and the Newest Vital Sign, a validated literacy measure. Outcomes on completion of EI referrals were obtained from the county EI provider. Results: Of 88 EI referrals during the study period, 53 patients were eligible and enrolled. Patients were predominantly male, racially diverse, on public health insurance, with a mean age of 18.4 months. Most caregivers of patients had less than a high school education, spoke a non-English language at home, and had limited literacy. Forty-two families (79.2%) completed a referral, and 34 (81.0%) of those were eligible for EI services. There were no significant differences in demographic, language, or literacy measures between those who completed and did not complete EI referrals. Discussion: A patient navigation program to facilitate EI referrals was feasible in a diverse urban patient population. Preliminary results of the patient navigation program on EI referral completion were promising and warrant further study.
The 22q11.2 deletion syndrome (22q11DS) is associated with impaired cognitive functions and increased risk for schizophrenia spectrum disorders. Speech and language deficits are prominent, with ...evidence of decline anteceding emergence of psychosis. There is paucity of data examining language function in children with 22q11DS with follow‐up assessment of psychosis spectrum (PS) symptoms. We examined the association between early language measures, obtained clinically, and PS status, obtained on average 10.1 years later, in 166 youths with 22q11DS, with repeated language testing in 48. Participants were administered the Preschool Language Scale (receptive/expressive), and/or, for school aged children, the Clinical Evaluation of Language Fundamentals (receptive/expressive), and age appropriate IQ tests. The structured interview for prodromal syndromes (SIPS) assessed PS symptoms. We found that performance on all preschool measures showed age associated decline, and males performed more poorly on core composite (receptive/expressive) and receptive language measures. For language assessment later in childhood, poorer performance was consistently associated with subsequent PS status. Furthermore, steeper age‐related decline was seen in the PS group across language measures and marginally for full‐scale IQ. These findings suggest that while preschool language testing is useful in characterizing performance decline in individuals with 22q11DS, it does not robustly differentiate those with subsequent PS from those without. However, language testing in the school age population can help identify individuals with 22q11DS who are at risk for psychosis. Such data are needed for elucidating a lifespan trajectory for affected individuals and may help understand pathways to psychosis applicable to the general population.
Aim
To assess in children with severe bronchopulmonary dysplasia at a corrected age of 18–36 months: (i) Neonatal follow‐up clinic attendance rates; (ii) Parent‐identified reasons for difficulty ...attending neonatal follow‐up.
Methods
Mixed methods study utilising semi‐structured phone interviews with parents of infants eligible for follow‐up with severe bronchopulmonary dysplasia (defined as gestational age <32 weeks and requiring ≥30% FiO2 and/or >2 L nasal cannula at 36 weeks post‐menstrual age) at 18–36 months corrected age. Questions addressed barriers to neonatal follow‐up attendance. Enrolment continued to saturation (no new themes emerging).
Results
A total of 58 infants (69% male) were enrolled. Infants were 26 ± 2.1 weeks gestational age and birth weight 794 ± 262 g. At 28 ± 5.8 months corrected age, 26% had never attended neonatal follow‐up clinic, 16% stopped attending before discharge, 5% were discharged, and 53% were still followed. Longer travel distance from home to follow‐up clinic was associated with poorer attendance. Parent‐generated items related to neonatal follow‐up barriers were coded into four themes: Logistics, Time, Perceptions and Emotional Stress.
Conclusion
Despite high risk of developmental delay in infants with severe bronchopulmonary dysplasia, neonatal follow‐up rates are suboptimal. Careful review of parent‐identified barriers could be utilised to develop targeted strategies to improve neonatal follow‐up attendance in this high‐risk population.
To determine feasibility and explore effects of literacy promotion using e-books versus board books on the home reading environment, book reading, television use, and child development.
Randomized ...controlled trial comparing digital literacy promotion (DLP) using e-books to standard literacy promotion (SLP) using board books among Medicaid-eligible infants. DLP participants received e-books on home digital devices, while SLP participants received board books at well visits between 6 and 12 months of age. Differences in StimQ Read Subscale (StimQ-Read) scores, parent-reported reading and television use, and Bayley Scales of Infant Development-3rd Edition (Bayley-3) scores between groups were assessed using intention-to-treat analysis.
A total of 104 Medicaid-eligible infants were enrolled and randomized from 3 pediatric practices. There were no differences in sociodemographic characteristics between groups at baseline. Children in the DLP group initially had lower StimQ-Read scores but showed similar increases in StimQ-Read scores over time as children in the SLP group. Parents in the DLP group reported greater use of digital devices to read or engage their child (65% vs 23%, P < .001) but similar board book reading and television viewing. There were no differences between groups in cognitive or motor scale scores, but DLP participants had marginally lower language scales scores (DLP 85.7 vs SLP 89.7; P = .10) at the 6-month follow-up.
Literacy promotion using e-books was feasible and associated with greater e-book usage but no difference in board book reading, television viewing, or home reading environment scores. A potential adverse impact of e-books on language development should be confirmed in future study.
Research is needed to identify challenges to developmental screening and strategies for screening in an urban pediatric setting.
Parents of young children and clinicians at four urban pediatric ...practices participated in focus groups prior to implementation of screening. Participants were queried regarding attitudes, social norms, and barriers to developmental screening. Using information from the focus groups, workflow strategies were developed for implementing screening. Referral rates and satisfaction with screening were gathered at the conclusion.
Six focus groups of parents and clinicians were conducted. Major themes identified included 1) parents desired greater input on child development and increased time with physicians, 2) physicians did not fully trust parental input, 3) physicians preferred clinical acumen over screening tools, and 4) physicians lacked time and training to conduct screening. For the intervention, developmental screening was implemented at the 9-, 18-, 24-, and 30-month well visits using the Ages & Stages Questionnaire-II and the Modified Checklist for Toddlers. 1397 (98% of eligible) children under 36 months old were enrolled, and 1184 (84%) were screened at least once. 1002 parents (85%) completed a survey at the conclusion of the screening trial. Most parents reported no difficulty completing the screens (99%), felt the screens covered important areas of child development (98%), and felt they learned about their child's strengths and limitations (88%).
Developmental screening in urban low-income practices is feasible and acceptable, but requires strategies to capture parental input, provide training, facilitate referrals, and develop workflow procedures and electronic decision support.
The electronic health record (EHR) should contain information to support culturally responsive care and research; however, the widely used default "Asian" demographic variable in most US social ...systems (including EHRs) lacks information to describe the diverse experience within the Asian diaspora (e.g., ethnicities, languages). This has a downstream effect on research, identifying disparities, and addressing health equity. We were particularly interested in EHRs of autistic patients from the Asian diaspora, since the presence of a developmental diagnosis might call for culturally responsive care around understanding causes, treatments, and services to support good outcomes. The aim of this study is to determine the degree to which information about Asian ethnicity, languages, and culture is documented and accessible in the EHR, and whether it is differentially available for patients with or without autism. Using electronic and manual medical chart review, all autistic and "Asian" children (group 1; n = 52) were compared to a randomly selected comparison sample of non-autistic and "Asian" children (group 2; n = 50). Across both groups, manual chart review identified more specific approximations of racial/ethnic backgrounds in 54.5% of patients, 56% for languages spoken, and that interpretation service use was underestimated by 13 percentage points. Our preliminary results highlight that culturally responsive information was inconsistent, missing, or located in progress notes rather than a central location where it could be accessed by providers. Recommendations about the inclusion of Asian ethnicity and language data are provided to potentially enhance cultural responsiveness and support better outcomes for families with an autistic child.The electronic health record (EHR) should contain information to support culturally responsive care and research; however, the widely used default "Asian" demographic variable in most US social systems (including EHRs) lacks information to describe the diverse experience within the Asian diaspora (e.g., ethnicities, languages). This has a downstream effect on research, identifying disparities, and addressing health equity. We were particularly interested in EHRs of autistic patients from the Asian diaspora, since the presence of a developmental diagnosis might call for culturally responsive care around understanding causes, treatments, and services to support good outcomes. The aim of this study is to determine the degree to which information about Asian ethnicity, languages, and culture is documented and accessible in the EHR, and whether it is differentially available for patients with or without autism. Using electronic and manual medical chart review, all autistic and "Asian" children (group 1; n = 52) were compared to a randomly selected comparison sample of non-autistic and "Asian" children (group 2; n = 50). Across both groups, manual chart review identified more specific approximations of racial/ethnic backgrounds in 54.5% of patients, 56% for languages spoken, and that interpretation service use was underestimated by 13 percentage points. Our preliminary results highlight that culturally responsive information was inconsistent, missing, or located in progress notes rather than a central location where it could be accessed by providers. Recommendations about the inclusion of Asian ethnicity and language data are provided to potentially enhance cultural responsiveness and support better outcomes for families with an autistic child.
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