Evaluating Knowledge of Developmental Disabilities Among WIC Participants

Background: Children in racial/ethnic minority and low-income families are more likely to experience low rates of early developmental disability (DD) diagnosis. Racial/ethnic and language differences in parent information about DDs could contribute to diagnostic delays, but little is known about differences in parent DD familiarity. Objectives: To assess DD knowledge and information in a sample of low-income families. Methods: We conducted a self-administered survey on 539 parents attending their child’s appointment at the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) in six Oregon counties. Survey items assessed familiarity with early signs of DDs, self-reported knowledge about DDs, and having a friend or family member with ASD. Bivariable and multivariable analyses assessed differences in outcomes for following ethnicity/language groups: non-Latino white [white], Latino-English proficient [Latino-EP], Latino-limited English proficient [Latino-LEP], and non-Latino other race English proficient [other race]. Results: Overall, participants correctly identified 64.7% of early signs of DDs. White participants correctly identified the most signs after adjustment for socio-demographic differences. Latino-LEP and other race participants more likely to have never heard of several prevalent DDs, and were also less likely to have a friend or family member with a DD compared to white families. Conclusions: Low-income parents, particularly Latino-LEP and other race parents, have relatively little familiarity or personal experience with DDs, and are less aware of DD early signs. Study findings suggest that interventions to reduce disparities in DD diagnosis and treatment should include increasing information transfer to parents in low-income and racial/ethnic minority communities

Latino Parents\u27 Perspectives on Barriers to Autism Diagnosis

Recent estimates suggest that Autism Spectrum Disorders (ASDs) affect more than 1% of U.S. children over age 3, and rates ASD diagnosis may be increasing.1 ASDs can be reliably diagnosed,2 and early diagnosis is associated with improved long-term developmental and family outcomes.3 However, many children meeting ASD diagnostic criteria are never diagnosed4 or are diagnosed years after onset of symptoms.4,5 Delayed diagnosis is a particular problem among Latino children:6,7 Latino children receive a diagnosis of an ASD 2.5 years later than white non-Latino children.8 Latino children are also less likely to carry an ASD diagnosis; however, when diagnosed, they are more likely to have severe symptoms than white non-Latino children.4,9,1

Conceptualization of Autism in the Latino Community and its Relationship with Early Diagnosis

Objective—Early identification of autism spectrum disorders (ASD) has been linked to improved long-term developmental outcomes. However, Latino children are diagnosed later than white non- Latino children. We aimed to qualitatively assess the understanding and conceptualization of ASD in the Latino community in order to understand potential community barriers to early diagnosis. Method—We conducted 5 focus groups and 4 qualitative interviews with 30 parents of typicallydeveloping Latino children in Oregon. Participants were asked structured questions concerning video vignettes that follow a Latina mother from the time she begins to worry about her 3-year-old son\u27s behaviors to the time he receives an ASD diagnosis. Focus groups and interviews were audio-recorded, transcribed and independently coded. Coded data were analyzed using thematic analysis. Results—Many Latino families in the study had not heard of ASD or had little information about it. Families sometimes assumed ASD red flags were normal or could be attributed to family dysfunction. Families also had concerns about provider communication and access to language services. Having a child with a developmental delay was associated with embarrassment, rejection, and family burden, making it difficult for parents to raise developmental concerns with providers. Conclusion—Pediatric providers should not assume that Latino parents have heard of ASD or know its symptoms. Providers should be aware that parents may be reluctant to mention concerns due to cultural factors. The health care system needs to improve resources for Latino parents with limited English proficiency. Policies should encourage the use of developmental screening in primary car

Consensus Panel for Assessing Usability and Acceptability of Mobile Health Autism Screeners

Abstract: Background: Parents go online to assess whether their child has symptoms of autism. Though early autism identification is important, language, cultural, and technological barriers may impede equitable access to online autism screening tools. Objective: To create consensus recommendations for equitable design of autism screening apps and websites using an online panel of parents, autistic self-advocates, health and educational providers, autism researchers, and online screening tool developers. Methods: We invited 6 parents (4 of autistic and 2 of typically-developing children), 2 autistic adults, 3 early intervention providers, 3 pediatric primary care providers, and 3 autism online screening app/website developers to participate in a consensus panel, using a Modified Delphi design. The panel includes 3 asynchronous rounds of online discussion and voting and one live online videoconference. Participants initially received a multimedia summary (written summaries, videos, interactive polls) of prior research on screening tool usability/accessibility, and a list of preliminary design recommendations. In each round, participants discuss recommendations, make suggestions for alternative or additional recommendations, and vote for most important recommendations. The list of recommendations is iteratively revised and reduced after each round. In the final videoconference discussion, a consensus guideline will be created based on the recommendations vetted by panel participants. Anticipated results: The consensus panel is currently in process. Some example recommendations include: Screener should be accessible on multiple platforms (e.g., iOS, Android) parents should be able to complete screener inminutes Conclusion: A multidisciplinary panel can help translate research findings to actionable recommendations for equitable autism screening

Barriers to Specialty Care and Specialty Referral Completion in the Community Health Center Setting

Objective To assess the frequency of barriers to specialty care and to assess which barriers are associated with an incomplete specialty referral (not attending a specialty visit when referred by a primary care provider) among children seen in community health centers. Study design: Two months after their child’s specialty referral, 341 parents completed telephone surveys assessing whether a specialty visit was completed and whether they experienced any of 10 barriers to care. Family/community barriers included difficulty leaving work, obtaining childcare, obtaining transportation, and inadequate insurance. Health care system barriers included getting appointments quickly, understanding doctors and nurses, communicating with doctors’ offices, locating offices, accessing interpreters, and inconvenient office hours. We calculated barrier frequency and total barriers experienced. Using logistic regression, we assessed which barriers were associated with incomplete referral, and whether experiencing ≥4 barriers was associated with incomplete referral. Results: A total of 22.9% of families experienced incomplete referral. 42.0% of families encountered 1 or more barriers. The most frequent barriers were difficulty leaving work, obtaining childcare, and obtaining transportation. On multivariate analysis, difficulty getting appointments quickly, difficulty finding doctors’ offices, and inconvenient office hours were associated with incomplete referral. Families experiencing ≥4 barriers were more likely than those experiencing ≤3 barriers to have incomplete referral. Conclusion: Barriers to specialty care were common and associated with incomplete referral. Families experiencing many barriers had greater risk of incomplete referral. Improving family/community factors may increase satisfaction with specialty care; however, improving health system factors may be the best way to reduce incomplete referrals

Variation in Educational Services Receipt Among US Children With Developmental Conditions

OBJECTIVES: This study examined (1) the relationship between ease of access to needed community-based services (ease of access) and educational services receipt and (2) variation in educational services receipt by sociodemographic and need factors among a nationally representative sample of children with autism spectrum disorder (ASD), developmental delay (DD), and/or intellectual disability (ID). METHODS: Data from the 2009-10 National Survey of Children with Special Health Care Needs were linked to the 2011 Survey of Pathways to Diagnosis and Services on a sample of 3,502 US children aged 6-17 years with ASD, DD, and/or ID. Descriptive statistics, chi-square tests, and multivariable logistic regression models were used to determine associations of educational services receipt with (1) ease of access and (2) sociodemographic and need factors. RESULTS: Among children with developmental conditions, nearly half (49.7%) lacked easy access to services and 16.9% did not have an individualized education program (IEP). Among children with an IEP, those with ease of access were more likely to have an IEP that addressed parent concerns about the child’s development and education than those unable to easily access services (aOR: 2.77; 95% CI: 1.71-4.49). Need factors, including functional limitations status, care coordination need, developmental condition type, and early intervention receipt, were significantly associated with educational services receipt. CONCLUSIONS: Cross-systems initiatives facilitating service access remain important to ensuring the developmental needs of children with ASD, DD, and/or ID are met. Increased interprofessional collaboration promoting quality educational services receipt for children diagnosed with developmental conditions may further reduce disparities.Keywords: school-based therapy, children with special health care needs, ease of access, autism spectrum disorder, developmental delay, individualized education program, developmental conditions, intellectual disabilit

Telehealth Family Navigation for Early Autism Services Access: The Autism ALERT Project

Background: Delays in access to educational services for autism are common and more likely among children from families of color and/or with low income. In-person family navigation accelerates autism diagnosis; however, the effectiveness of telehealth autism diagnostic navigation is unknown. Objectives: To test preliminary feasibility and efficacy of a telehealth autism navigation program. Method: This was a site-randomized pilot trial of autism family navigation for Oregon children in 2021-2022. The intervention used layperson family resource specialists based at Oregon’s Help Me Grow program as navigators for families of children with autism symptoms. Pediatric clinics with \u3e30% Medicaid, located in 5 Oregon counties, were invited to enroll children in the study. 7 clinics (49 primary care providers [PCPs]) participated; 4 were randomized to the family navigation intervention and 3 to usual care. PCPs in both arms received training on autism screening and referral to medical/educational services. PCPs then referred any child age 1-55 months with a positive screen and/or provider autism concern to the study. For children in intervention arm clinics, the navigator called parents, providing information about autism and the autism diagnostic process, assistance with paperwork, social support, and appointment reminders. Control arm clinics/children received no calls. Study enrollment continued until 50 children (30 intervention, 20 control) enrolled. Child Early Intervention/Early Childhood Special Education (EI/ECSE) data were collected from Oregon’s state database 6 months after enrollment. Primary study outcomes compared intervention and control arms on: % of children receiving EI/ECSE referrals within 6 months, % receiving an evaluation in EI/ECSE within 6 months, time from enrollment to EI/ECSE evaluation, and % of evaluated children receiving an autism educational label within 6 months. Results: All clinics enrolled children; children were 40.8% (n=20) white, 26.5% (n=13) Latino, and 32.7% (n=9) multiracial and/or other race/ethnicity. 16% were female (n=8); median age was 2. Intervention families received a median of 12 navigator telehealth contacts. Overall, 70% (n=21) of intervention arm and 42% (n =8) of control arm families were successfully referred to EI/ECSE (p = 0.05). Of those referred, 86% (n=18) of intervention arm and 100% (n=8) of control arm children were evaluated in EI/ECSE (n.s.). Median time to EI/ECSE evaluation was 103 days in the intervention and 162 days in the control arm (p = 0.68; Figure 1). Overall, 40% of intervention arm (n = 12) and 21% (n = 4) of control arm children had an autism placement, with a trend toward autism as the primary placement type in the intervention arm (p = 0.12). Conclusion: Telehealth family navigation shows promise for improving access to autism services in EI/ECSE, especially for securing an early EI/ECSE evaluation, and increasing autism educational labels. A full-scale trial can investigate more distal outcomes including receipt of medical diagnosis and therapeutic services use

The burden of childhood atopic dermatitis in the primary care setting: a report from the Meta-LARC Consortium

Background: Little is known about the burden of AD encountered in U.S. primary care practices and the frequency and type of skin care practices routinely used in children. Objectives: To estimate the prevalence of AD and allergic comorbidities in children 0-5 years attending primary care practices in the U.S. and to describe routine skin care practices used in this population. Design: A cross-sectional survey study of a convenience sample of children under the age of 5 attending primary care practices for any reason. Setting: Ten primary care practices in five U.S. states.Results: Amongst 652 children attending primary care practices, the estimated prevalence of ever having AD was 24 % (95% CI= 21-28) ranging from 15% among those under the age of one to 38% among those aged 4- 5 years. The prevalence of comorbid asthma was higher among AD participants compared to those with no AD, 12% and 4%, respectively (p less than 0.001). Moisturizers with high water:oil ratios were most commonly used (i.e., lotions) in the non-AD population, whereas moisturizers with low water:oil content (i.e. ointments) most common when AD was present. Conclusions: Our study found a large burden of AD in the primary care practice setting in the U.S. The majority of households reported skin care practices in children without AD that may be detrimental to the skin barrier such as frequent bathing and the routine use of moisturizers with high water: oil ratios. Clinical trials are needed to identify which skin care practices are optimal for reducing the significant risk of AD in the community

Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative

Patients with rare and complex diseases such as congenital adrenal hyperplasia (CAH) often receive fragmented and inadequate care unless efforts are coordinated among providers. Translating the concepts of the medical home and comprehensive health care for individuals with CAH offers many benefits for the affected individuals and their families. This manuscript represents the recommendations of a 1.5 day meeting held in September 2009 to discuss the ideal goals for comprehensive care centers for newborns, infants, children, adolescents, and adults with CAH. Participants included pediatric endocrinologists, internal medicine and reproductive endocrinologists, pediatric urologists, pediatric surgeons, psychologists, and pediatric endocrine nurse educators. One unique aspect of this meeting was the active participation of individuals personally affected by CAH as patients or parents of patients. Representatives of Health Research and Services Administration (HRSA), New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC), and National Newborn Screening and Genetics Resource Center (NNSGRC) also participated. Thus, this document should serve as a “roadmap” for the development phases of comprehensive care centers (CCC) for individuals and families affected by CAH

Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative

Patients with rare and complex diseases such as congenital adrenal hyperplasia (CAH) often receive fragmented and inadequate care unless efforts are coordinated among providers. Translating the concepts of the medical home and comprehensive health care for individuals with CAH offers many benefits for the affected individuals and their families. This manuscript represents the recommendations of a 1.5 day meeting held in September 2009 to discuss the ideal goals for comprehensive care centers for newborns, infants, children, adolescents, and adults with CAH. Participants included pediatric endocrinologists, internal medicine and reproductive endocrinologists, pediatric urologists, pediatric surgeons, psychologists, and pediatric endocrine nurse educators. One unique aspect of this meeting was the active participation of individuals personally affected by CAH as patients or parents of patients. Representatives of Health Research and Services Administration (HRSA), New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC), and National Newborn Screening and Genetics Resource Center (NNSGRC) also participated. Thus, this document should serve as a “roadmap” for the development phases of comprehensive care centers (CCC) for individuals and families affected by CAH