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

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

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

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

Abstract 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

An Intervention to Increase Detection of Developmental Delays in WIC Programs

Background: Low-income children are at risk for under-detection of developmental disabilities DD. WIC clinics see low-income children regularly in early childhood and could be an important source of referrals to developmental services. Objectives: To increase the number of referrals to EI/ECSE from non-primary care settings such as WIC. Methods: This was a site-randomized trial of an intervention to train WIC staff in early identification of DD’s, using CDC’s LTSAE developmental monitoring materials. 7 county WIC agencies in Oregon enrolled; 4 intervention agencies and 3 control agencies. The intervention consisted of an on-site, half-day training regarding signs of developmental delays, use of LTSAE materials, and referral to EI/ECSE. WIC staff were encouraged to identify and refer at-risk children to EI/ECSE. Control sites received no training and continued their usual processes. Primary study outcome was number of children referred from WIC to EI/ECSE in control vs. experimental counties as well as % of referrals evaluated based on data obtained Oregon’s EI/ECSE program. Results: Data for 46 children referred to EI/ECSE were obtained. Overall, 3 of 4 intervention sites increased their referrals to EI, and 0 of 3 control sites increased referrals. Total referrals in the intervention arm increased from 5 to 33 in the intervention arm, but decreased from 6 to 2 in the control arm. Conclusion: This brief intervention with WIC staff led to short-term increases in EI referrals and evaluations

Decreasing Disparities in Child Development Assessment: Identifying and Discussing Possible Delays in the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC)

Objective: To assess how staff at the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) address potential developmental delays and parent developmental concerns in children /behavior, perceptions of connectedness with local developmental resources, and knowledge of typical child development. Results: Staff (N = 153) responses indicated knowledge of typical child development, frequent interactions with families about child development, and frequent noticing of developmental concerns. However, most staff reported being less than very well connected to developmental resources. Open-ended responses suggested that staff frequently make direct referrals to early intervention, public health nurses, and others who can further assess developmental concerns. Conclusion: Although it is outside the primary scope of their work, developmental and behavioral concerns are frequently raised and addressed by WIC staff.Findings suggest that strengthening the existing referral processes and enhancing continuity of care between WIC and developmental providers may improve child outcomes and reduce disparities

Ethical Implications for Providers Regarding Cannabis Use in Children With Autism Spectrum Disorders

Children with autism spectrum disorder (ASD) are at risk for self-injurious behaviors that can be difficult to treat in the context of co-occurring low IQ and adaptive skills. Increased prevalence and decriminalization of cannabis in some states have led to more frequent questions for pediatricians about the use of cannabis for difficult-to-treat developmental and behavioral conditions. What do we know about the possible benefits and risks of cannabis use in children with ASD? How should the clinician respond to a parent who expresses interest in cannabis to manage behavior in a child with ASD? Ethical analysis that includes harm reduction, health concerns, and information sharing will be discussed. We present commentary on the ethical implications of cannabis use in children with ASD and severe self-harm behaviors