Applying autism screening research to real-world scenarios: a commentary on Sheldrick et al. (2023).

Early identification of autism spectrum disorder (ASD) continues to be a challenge despite universal screening efforts. One explanation is that screening tools have lower sensitivity and specificity than initial studies report when accounting for incomplete follow-up for all children screened. Sheldrick and colleagues used statistical modeling to demonstrate the impact on sensitivity and specificity when assumptions about the diagnostic outcome of children who do not pursue diagnostic evaluation are altered. Crucially, the work of Sheldrick et al. serves as a reminder that autism screening in primary care is just one component of the clinical assessment and should not be conflated with a diagnostic evaluation. Thus, lack of follow-up after a positive screen is a feature, not only a bug when using a screen in a clinical setting. Engaging families in shared decision-making around screening may help encourage follow-up, and thus, screening tool psychometric performance.

Screening for Autism: A Review of the Current State, Ongoing Challenges, and Novel Approaches on the Horizon.

Screening for autism is recommended in pediatric primary care. However, the median age of autism spectrum disorder (ASD) diagnosis is substantially higher than the age at which autism can reliably be identified, suggesting room for improvements in autism recognition at young ages, especially for children from minoritized racial and ethnic groups, low-income families, and families who prefer a language other than English. Novel approaches are being developed to utilize new technologies in aiding in autism recognition. However, attention to equity is needed to minimize bias. Additional research on the benefits and potential harms of universal autism screening is needed. The authors provide suggestions for pediatricians who are considering implementing autism-screening programs.

Feasibility, Acceptability, and Health Outcomes Associated With Telehealth for Children in Families With Limited English Proficiency.

BACKGROUND: Telehealth use in pediatrics increased during the COVID-19 pandemic and may improve health care access. It may also exacerbate health care disparities among families with limited English proficiency (LEP). OBJECTIVE: To systematically review the feasibility, acceptability, and/or associations between telehealth delivery and health outcomes for interventions delivered synchronously in the United States. DATA SOURCES: PubMed, Embase, and Scopus. STUDY ELIGIBILITY CRITERIA: Original research exploring pediatric health outcomes after telehealth delivery and studies that explored the feasibility and acceptability including surveys and qualitative studies. PARTICIPANTS: Patients 0 to 18 years with LEP and/or pediatric caregivers with LEP. STUDY APPRAISAL AND SYNTHESIS METHODS: Two authors independently screened abstracts, conducted full-text review, extracted information using a standardized form, and assessed study quality. A third author resolved disagreements. RESULTS: Of 1831 articles identified, 9 were included in the review. Half of the studies explored videoconferencing and the other half studied health care delivered by telephone. Feasibility studies explored telehealth for children with anxiety disorders and mobile phone support for substance abuse treatment among adolescents. Acceptability studies assessed parental medical advice-seeking behaviors and caregivers' general interest in telehealth. Health outcomes studied included follow-up of home parenteral nutrition, developmental screening, and cognitive behavioral therapy. LIMITATIONS: The articles were heterogeneous in approach and quality. CONCLUSIONS AND IMPLICATIONS OF KEY FINDINGS: Telehealth appears acceptable and feasible among children in families with LEP, with a limited evidence base for specific health outcomes. We provide recommendations both for the implementation of pediatric telehealth and future research. PROSPERO REGISTRATION: CRD42020204541.

Missing Ethnicity and Language Information in Healthcare Records of Patients from the Asian Diaspora.

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.

Disparities in Telehealth Uptake for Developmental-Behavioral Pediatric Assessments by Preferred Family Language: A Developmental Behavioral Pediatrics Research Network Study.

OBJECTIVE: Owing to the coronavirus disease 2019 (COVID-19) pandemic, many developmental-behavioral pediatric (DBP) practices adopted telehealth for care delivery. However, telehealth access and use for families with a preferred language other than English (PLOE) is an equity concern. Therefore, our study objective is to compare rates of telehealth utilization and visit completion by preferred family language among patients seen for DBP assessments during the COVID-19 pandemic. METHODS: We completed a descriptive chart review using electronic health record data at 4 academic DBP practices to examine visits for patients up to 5 years seen for new-patient appointments between April 2020 and April 2021. We compared rates of in-person and telehealth visits by preferred family language and visit outcome (completed or missed). RESULTS: A total of 3241 visits were scheduled between April 2020 and April 2021; 48.2% were for in-person and 51.8% for telehealth. Families reported the following languages: 90.5% English, 6.2% Spanish, and 3.3% other language. Missed visits accounted for 7.6% of scheduled visits. The relative percentage of in-person versus telehealth visits varied significantly by site (p < 0.001) and preferred family language (p < 0.001). English-speaking patients had 2.10 times the odds of being scheduled for telehealth compared with patients with PLOE, adjusting for site. Statistically significant differences were not found for visit outcome (completed or missed) by visit type (in-person or telehealth) (p = 0.79), including after accounting for PLOE status (p = 0.83). CONCLUSION: At the height of the pandemic, most English-speaking families were scheduled for new DBP evaluations by telehealth, but fewer families with PLOE were. Attention to language to ensure telehealth access equity is critical.

Lower Completion of Depression Screening and Higher Positivity Among Autistic Adolescents Across a Large Pediatric Primary Care Network.

OBJECTIVE: To examine rates of depression screening and positivity among autistic adolescents where electronic depression screening is administered universally; to compare rates between autistic and nonautistic youth; and to explore sociodemographic and clinical factors associated with screening completion and results. METHODS: We conducted a retrospective cohort study comparing 12-17-year-old autistic and nonautistic adolescents presenting for well-child care in a large pediatric primary care network between November 2017 and January 2019 (N = 60,181). Sociodemographic and clinical data, including PHQ-9-M completion status and results, were extracted digitally from the electronic health record and compared between autistic and nonautistic youth. Logistic regression explored the relationship between sociodemographic and clinical factors and screen completion and results, stratified by autism diagnosis. RESULTS: Autistic adolescents were significantly less likely to have a completed depression screen compared to nonautistic adolescents [67.0% vs 78.9%, odds ratio (OR) = 0.54, P < .01]. Among those with a completed screen, a higher percentage of autistic youths screened positive for depression (39.1% vs 22.8%; OR = 2.18, P < .01,) and suicidal ideation/behavior (13.4% vs 6.8%; OR = 2.13, P < .01). Factors associated with screening completion and positivity differed between autistic and nonautistic groups. CONCLUSIONS: Autistic adolescents were less likely to have a completed depression screen when presenting for well-child care. However, when screened, they were more likely to endorse depression and suicide risk. This suggests disparities in depression screening and risk among autistic youth compared to nonautistic youth. Additional research should evaluate the source of these disparities, explore barriers to screening, and examine longitudinal outcomes of positive results among this population.

Prevalence of autism spectrum disorder in a large pediatric primary care network.

LAY ABSTRACT: Historically, children from non-Hispanic Black and Hispanic backgrounds, those from lower-income families, and girls are less likely to be diagnosed with autism spectrum disorder. Under-identification among these historically and contemporaneously marginalized groups can limit their access to early, autism spectrum disorder-specific interventions, which can have long-term negative impacts. Recent data suggest that some of these trends may be narrowing, or even reversing. Using electronic health record data, we calculated autism spectrum disorder prevalence rates and age of first documented diagnosis across socio-demographic groups. Our cohort included children seen at young ages (when eligible for screening in early childhood) and again at least after 4 years of age in a large primary care network. We found that autism spectrum disorder prevalence was unexpectedly higher among Asian children, non-Hispanic Black children, children with higher Social Vulnerability Index scores (a measure of socio-economic risk at the neighborhood level), and children who received care in urban primary care sites. We did not find differences in the age at which autism spectrum disorder diagnoses were documented in children's records across these groups. Receiving primary care at an urban site (regardless of location of specialty care) appeared to account for most other socio-demographic differences in autism spectrum disorder prevalence rates, except among Asian children, who remained more likely to be diagnosed with autism spectrum disorder after controlling for other factors. We must continue to better understand the process by which children with autism spectrum disorder from traditionally under-identified and under-served backgrounds come to be recognized, to continue to improve the equity of care.

Provider and Caregiver Perspectives on Telehealth Assessments for Autism Spectrum Disorder in Young Children: A Multimethod DBPNet Study Exploring Equity.

BACKGROUND: Telehealth uptake increased dramatically during the COVID-19 pandemic, including for autism spectrum disorder (ASD) assessment by developmental-behavioral pediatric (DBP) clinicians. However, little is known about the acceptability of telehealth or its impact on equity in DBP care. OBJECTIVE: Engage providers and caregivers to glean their perspectives on the use of telehealth for ASD assessment in young children, exploring acceptability, benefits, concerns, and its potential role in ameliorating or exacerbating disparities in access to and quality of DBP care. METHODS: This multimethod study used surveys and semistructured interviews to describe provider and family perspectives around the use of telehealth in DBP evaluation of children younger than 5 years with possible ASD between 3/2020 and 12/2021. Surveys were completed by 13 DBP clinicians and 22 caregivers. Semistructured interviews with 12 DBP clinicians and 14 caregivers were conducted, transcribed, coded, and analyzed thematically. RESULTS: Acceptance of and satisfaction with telehealth for ASD assessments in DBP were high for clinicians and most caregivers. Pros and cons concerning assessment quality and access to care were noted. Providers raised concerns about equity of telehealth access, particularly for families with a preferred language other than English. CONCLUSION: This study's results can inform the adoption of telehealth in DBP in an equitable manner beyond the pandemic. DBP providers and families desire the ability to choose telehealth care for different assessment components. Unique factors related to performing observational assessments of young children with developmental and behavioral concerns make telehealth particularly well-suited for DBP care.

Global Trends in Telehealth Among Clinicians in Developmental-Behavioral Pediatric Practice: A COVID-19 Snapshot.

OBJECTIVE: This study aims to describe the extent of telehealth use by global developmental-behavioral pediatrics (DBP) clinicians and barriers (if any) in adopting telehealth during the coronavirus disease 2019 (COVID-19) pandemic. METHODS: A survey was disseminated to DBP clinicians through contact with international professional organizations to determine the use of telehealth in DBP care, before and since the beginning of the COVID-19 pandemic. Descriptive statistics and χ2 tests were used for analysis. RESULTS: A total of 271 respondents from 38 countries completed the survey. The number of respondents offering telehealth increased from 36% to 88% after the pandemic, with the greatest shift to telehealth among high-income countries (HICs). Among respondents using telehealth, 75.1% were conducting interactive video visits, with HICs using more telehealth modalities embedded in electronic health records. Most patients (98.7%) were at home for the telehealth encounter. Almost half (46.5%) could not include an interpreter in telehealth visits. Barriers reported by telehealth users included concerns about limited patient access to technology (74.3%), home environment distractions (56.5%), preference for in-person care (53.6%), telehealth effectiveness (48.1%), workflow efficiency (42.2%), and cost/reimbursement (32.1%). CONCLUSION: Global DBP clinicians rapidly adopted telehealth and continued to have interprofessional practice while doing so, with the largest adoption occurring in HICs. Provider concerns about effectiveness and patient access to technology emerged as key organizational and patient barriers, respectively. Increased provider confidence in telehealth and its sustained use in the future depends on supportive regulatory policies and availability and use of measures to monitor quality and effectiveness.

Society for Developmental & Behavioral Pediatrics Position Statement on Telehealth.

ABSTRACT: Telehealth has long held promise as a way to increase access to subspecialty care for children and families, including in developmental and behavioral pediatrics (DBP). The coronavirus disease 2019 (COVID-19) pandemic necessitated rapid uptake of telehealth to continue care delivery that was facilitated by "temporary" policy changes related to the pandemic. As a result, the field of DBP has recognized telehealth as a potential model of care for performing home-based diagnostic assessments, providing medication management follow-up, and delivering therapeutic interventions for children with neurodevelopmental disorders. Telehealth has been helpful in mitigating barriers families often face when attending in-person visits (lack of transportation and child care, missed work hours, etc) but has also highlighted additional determinants of health that need to be addressed to provide equitable access to care (broadband connectivity, device access, digital literacy, access to interpretation and sign language services, etc). Anticipating the lifting of pandemic-related emergency declaration and expiration of temporary policies around telehealth, the ability to continue to deliver DBP care by telehealth is uncertain. The purpose of this policy statement is to advocate for legislation and policies that support ongoing, equitable, home-based telehealth care for patients seen by DBP providers while ensuring equitable access to DBP in general. In addition, there is a need to recognize the benefits and challenges of telehealth versus in-person care and to identify clinical scenarios that favor 1 model of care versus the other.

Autism Spectrum Disorder Screening During the COVID-19 Pandemic in a Large Primary Care Network.

OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Insights from Behavioral Economics: A Case of Delayed Diagnosis of Autism Spectrum Disorder.

ABSTRACT: We present the case of a child of color diagnosed with autism spectrum disorder (ASD) at 67 months of age. Drawing from behavioral economics, we used this case to explore errors in decision-making by clinicians and family members and structural factors that may have delayed ASD diagnosis well beyond the national average.

Association between Preferred Language and Risk of Severe Acute Respiratory Syndrome Coronavirus 2 Infection in Children in the United States.

The severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic has had a disproportionate impact on Black, Hispanic, and other individuals of color, although data on the effect of a person's language on SARS-CoV-2 infection are limited. Considering the barriers suffered by immigrants and non-English-speaking families, we tested whether children with a preferred language other than English was associated with SARS-CoV-2 infection. Children from families with a preferred language other than English had a higher predicted probability of SARS-CoV-2 test positivity (adjusted odds ratio, 3.76; 95% CI, 2.07-6.67) during the first wave of the pandemic. This discrepancy continued into the second wave (adjusted odds ratio, 1.64; 95% CI, 1.10-2.41), although the difference compared with families who prefer to speak English decreased over time. These findings suggest that children from non-English-speaking families are at increased risk of SARS-CoV-2 infection, and efforts to reverse systemic inequities causing this increased risk are needed.

Provider Responses to Positive Developmental Screening: Disparities in Referral Practices?

OBJECTIVES: Guidelines recommend universal screening for developmental concerns in young children in pediatric primary care, with referral to early intervention (EI) as early as possible for children with a positive screen. However, participation in EI differs by child race, ethnicity, language, and sex. This study evaluated disparities in rates of referral to EI and estimated the factors associated with referral before and immediately after a positive developmental screen. METHODS: Children seen in a large primary care network that has implemented universal developmental screening were included if they screened positive on the Survey of Well-being of Young Children (SWYC) Milestones during a 16- to 30-month well-child visit (n = 7358). Demographics, screening results, and referrals were extracted from the electronic health record. RESULTS: Among children who screened positive, 17.5% were already in EI, and 39.9% were referred to EI during the visit with positive screen; 42.5% were not referred. In adjusted regression, the following factors were associated with being in EI before the positive screen: lower SWYC score and being male, older, and White. The following factors were associated with new referral to EI during a visit with positive SWYC: having lower SWYC score or lower income and being male, older, and Black race. CONCLUSION: The finding that White children were more likely referred before developmental screening and non-White children more likely referred at the time of positive screen suggests that screening decreases disparities by increasing referral for children with developmental delays from traditionally underserved backgrounds.

Use of Telehealth in Fellowship-Affiliated Developmental Behavioral Pediatric Practices During the COVID-19 Pandemic.

OBJECTIVE: This study aims to describe the use of telehealth in developmental behavioral pediatric (DBP) fellowship-affiliated practices during the coronavirus disease 2019 (COVID-19) global pandemic. METHODS: An electronic survey was disseminated to all DBP fellowship-associated practice locations to determine the use of telehealth in DBP care provision, before and since the beginning of the COVID-19 pandemic. We analyzed responses using descriptive statistics. RESULTS: A total of 35 of 42 eligible practice sites responded (83% response rate). Most sites (51.4%) reported using telehealth less than once per month before the COVID-19 pandemic. Since the onset of COVID-19, 100% of programs reported conducting video-based telehealth visits multiple days per week. Most sites reported conducting evaluations and follow-up visits for attention-deficit/hyperactivity disorder, autism spectrum disorder, behavioral concerns, developmental delay, genetic disorders, and learning disability. Most sites were able to continue medication management by telehealth (>88%), offer interpreter services for families with limited English proficiency participating in telehealth visits (>90%), and incorporate trainees and interdisciplinary team members in telehealth visits (>90%). Greater variability was observed in sites' ability to collect telehealth practice evaluation measures. CONCLUSION: Most sites are providing evaluations and ongoing care for DBP conditions through telehealth. The rapid adoption of telehealth can have ramifications for the way that DBP care is delivered in the future; therefore, it is imperative to understand current practice patterns and variations to determine the best use of telehealth.

Screening Instruments for Developmental and Behavioral Concerns in Pediatric Hispanic Populations in the United States: A Systematic Literature Review.

BACKGROUND: Racial and ethnic disparities in the identification of developmental and behavioral concerns in children are public health problems in the United States. Early identification of developmental delay using validated screening instruments provides a pathway to prevention and intervention in pediatric health care settings. However, the validity of Spanish-language screening instruments, used in clinical settings in the United States, has not been systematically examined. OBJECTIVE: This study aims to review the literature of clinically administered developmental and behavioral instruments with Hispanic caregivers to investigate implementation variation due to language and cultural factors. METHODS: A systematic literature review using PubMed and PsycINFO was conducted of articles published from January 1, 2006 to December 12, 2017. Abstract, full-text, and critical appraisal resulted in 11 studies that met criteria for inclusion. RESULTS: Five different instruments were used to screen Hispanic or Spanish-speaking caregivers of children younger than 6 years. None of the instruments established validity and reliability apart from Spanish translation. Two studies identified differences in screening results with Spanish-speaking caregivers due to language and 6 described cultural differences that impacted screening implementation. Two studies reported differential item functioning in Spanish-translated instruments. CONCLUSIONS: Language and cultural considerations are critical to the administration of valid and reliable screening in pediatric health care settings. Available developmental and behavioral Spanish-language-screening instruments function differently because of both language and culture, suggesting the tools are not as psychometrically valid when administered to Spanish-speaking families. Validation of translated screening instruments is essential to eliminate the possibility of detection bias or misidentification of developmental risk, improving early access to clinical services for Hispanic and Spanish-speaking families.

Adherence to screening and referral guidelines for autism spectrum disorder in toddlers in pediatric primary care.

OBJECTIVES: Although the American Academy of Pediatrics recommends screening for autism spectrum disorder (ASD) for all young children, disparities in ASD diagnosis and intervention in minority children persist. One potential contributor to disparities could be whether physicians take different actions after an initial positive screen based on patient demographics. This study estimated factors associated with physicians completing the follow-up interview for the Modified Checklist for Autism in Toddlers with Follow-up (M-CHAT-F), and referring children to diagnostic services, audiology, and Early Intervention (EI) immediately after a positive screen. METHODS: Children seen in a large primary care network that has implemented universal ASD screening were included if they screened positive on the M-CHAT parent questionnaire during a 16-30 month well child visit (N = 2882). Demographics, screening results, and referrals were extracted from the electronic health record. RESULTS: Children from lower-income families or on public insurance were more likely to have been administered the follow-up interview. Among children who screened positive, 26% were already in EI, 31% were newly referred to EI, 11% were referred each to audiology and for comprehensive ASD evaluation. 40.2% received at least one recommended referral; 3.7% received all recommended referrals. In adjusted multivariable models, male sex, white versus black race, living in an English-speaking household, and having public insurance were associated with new EI referral. Male sex, black versus white race, and lower household income were associated with referral to audiology. Being from an English-speaking family, white versus Asian race, and lower household income were associated with referral for ASD evaluation. A concurrent positive screen for general developmental concerns was associated with each referral. CONCLUSIONS: We found low rates of follow-up interview completion and referral after positive ASD screen, with variations in referral by sex, language, socio-economic status, and race. Understanding pediatrician decision-making about ASD screening is critical to improving care and reducing disparities.

Bilateral Cochlear Implants: Maximizing Expected Outcomes.

CASE: Sonia is a 4 years 1 month-year-old girl with Waardenburg syndrome and bilateral sensorineural hearing loss who had bilateral cochlear implants at 2 years 7 months years of age. She is referred to Developmental-Behavioral Pediatrics by her speech/language pathologist because of concerns that her language skills are not progressing as expected after the cochlear implant. At the time of the implant, she communicated using approximately 20 signs and 1 spoken word (mama). At the time of the evaluation (18 months after the implant) she had approximately 70 spoken words (English and Spanish) and innumerable signs that she used to communicate. She could follow 1-step directions in English but had more difficulty after 2-step directions.Sonia was born in Puerto Rico at 40 weeks gestation after an uncomplicated pregnancy. She failed her newborn hearing test and was given hearing aids that did not seem to help.At age 2 years, Sonia, her mother, and younger sister moved to the United States where she was diagnosed with bilateral severe-to-profound hearing loss. Genetic testing led to a diagnosis of Waardenburg syndrome (group of genetic conditions that can cause hearing loss and changes in coloring [pigmentation] of the hair, skin, and eyes). She received bilateral cochlear implants 6 months later.Sonia's mother is primarily Spanish-speaking and mostly communicates with her in Spanish or with gestures but has recently begun to learn American Sign Language (ASL). In a preschool program at a specialized school for the deaf, Sonia is learning both English and ASL. Sonia seems to prefer to use ASL to communicate.Sonia receives speech and language therapy (SLT) 3 times per week (90 minutes total) individually in school and once per week within a group. She is also receiving outpatient SLT once per week. Therapy sessions are completed in English, with the aid of an ASL interpreter. Sonia's language scores remain low, with her receptive skills in the first percentile, and her expressive skills in the fifth percentile.During her evaluation in Developmental and Behavioral Pediatrics, an ASL interpreter was present, and the examiner is a fluent Spanish speaker. Testing was completed through a combination of English, Spanish, and ASL. Sonia seemed to prefer ASL to communicate, although she used some English words with errors of pronunciation. On the Beery Visual-Motor Integration Test, she obtained a standard score of 95. Parent and teacher rating scales were not significant for symptoms of attention-deficit/hyperactivity disorder.What factors are contributing to her slow language acquisition and how would you modify her treatment plan?