The Autism and Developmental Disabilities Monitoring (ADDM) Network conducts population-based surveillance of autism spectrum disorder (ASD) in multiple US communities among 8-year-old children. To classify ASD, ADDM sites collected text descriptions of behaviors from medical and educational evaluations which were reviewed and coded by ADDM clinicians. This process took at least four years to publish data from a given surveillance year. In 2018, we developed an alternative case definition utilizing ASD diagnoses or classifications made by community professionals. Using surveillance years 2014 and 2016 data, we compared the new and previous ASD case definitions. Compared to the prevalence based on the previous case definition, the prevalence based on the new case definition was similar for 2014 and slightly lower for 2016. Sex and race/ethnicity prevalence ratios were nearly unchanged. Compared to the previous case definition, the new case definition's sensitivity was 86% and positive predictive value was 89%. The new case definition does not require clinical review and collects about half as much data yielding more timely reporting. It also more directly measures community identification of ASD, thus allowing for more valid comparisons among communities, and reduces resource requirements while retaining similar measurement properties to the previous definition.

Drinking alcohol during pregnancy can cause fetal alcohol spectrum disorders, including birth defects, behavioral disorders, and impaired cognitive development (1). Little is known about the co-use of other substances by females who drink during pregnancy. CDC used 2015-2018 data from the National Survey on Drug Use and Health (NSDUH) to estimate the overall and trimester-specific prevalence of self-reported drinking in the past 12 months, current drinking, and binge drinking, overall and by trimester, and the co-use of other substances among pregnant females aged 12-44 years. Past drinking (12 months) was reported by 64.7% of pregnant respondents. Current drinking (at least one drink in the past 30 days) was reported by 19.6% of respondents who were in their first trimester of pregnancy and 4.7% of respondents who were in their second or third trimester. Binge drinking (consuming four or more drinks on at least one occasion in the past 30 days) was reported by 10.5% of first trimester respondents and 1.4% of second or third trimester respondents. Overall, 38.2% of pregnant respondents who reported current drinking also reported current use of one or more other substances. The substances used most with alcohol were tobacco and marijuana. Self-reported drinking prevalence was substantially lower among second or third trimester respondents than among first trimester respondents. The American College of Obstetricians and Gynecologists (ACOG) recommends alcohol use and substance use disorders screening for all females seeking obstetric-gynecologic care and counseling patients that there is no known safe level of alcohol use during pregnancy (2).

Following the large outbreak of Zika virus in the Western Hemisphere, many infants have been born with congenital Zika virus infection. It is important to describe the functional outcomes seen with congenital infections to allow for their recognition and appropriate interventions. We evaluated 120 children conceived during the 2015-2016 Zika virus outbreak in Paraiba, Brazil, who were approximately 24 months old, to assess functional outcomes. All children met either anthropometric criteria or laboratory criteria suggestive of possible congenital Zika virus infection. We collected results of previous medical evaluations, interviewed parents, and performed physical examinations and functional assessments, for example, the Hammersmith Infant Neurological Examination (HINE). We compared patterns of neurologic outcomes and developmental delay at age 24 months by whether children met anthropometric or laboratory criteria, or both. Among children meeting both criteria, 60% (26/43) were multiply affected (had severe motor impairment, severe developmental delay, and suboptimal HINE scores), compared with 5% (3/57) meeting only laboratory criteria and none (0/20) meeting only anthropometric criteria. Of the remaining 91 children, 49% (45) had developmental delay, with more severe delay seen in children meeting both criteria. Although children meeting physical and laboratory criteria for potential congenital Zika virus infection were more severely affected, we did identify several children with notable adverse neurologic outcomes and developmental delay with no physical findings but potential laboratory evidence of Zika virus infection. Given this, all children who were potentially exposed in utero to Zika virus should be monitored in early childhood for deficits to allow for early intervention.

Newborn screening is a highly successful public health program that has led to major improvements in outcomes for a variety of conditions otherwise associated with long-term disability and even death.1 In the United States, newborn screening is provided to every newborn, regardless of circumstance, leading to the identification of >13 000 newborns with a significant condition each year.1 Most of these individuals require specialized care over their life span. However, public health involvement in newborn screening typically ends once the condition has been diagnosed. This can lead to gaps in care and impede the ability to collect the data necessary for quality improvement and assess treatment effectiveness.

OBJECTIVES: To study the national prevalence of 10 developmental disabilities in US children aged 3 to 17 years and explore changes over time by associated demographic and socioeconomic characteristics, using the National Health Interview Survey. METHODS: Data come from the 2009 to 2017 National Health Interview Survey, a nationally representative survey of the civilian noninstitutionalized population. Parents reported physician or other health care professional diagnoses of attention-deficit/hyperactivity disorder; autism spectrum disorder; blindness; cerebral palsy; moderate to profound hearing loss; learning disability; intellectual disability; seizures; stuttering or stammering; and other developmental delays. Weighted percentages for each of the selected developmental disabilities and any developmental disability were calculated and stratified by demographic and socioeconomic characteristics. RESULTS: From 2009 to 2011 and 2015 to 2017, there were overall significant increases in the prevalence of any developmental disability (16.2%-17.8%, P < .001), attention-deficit/hyperactivity disorder (8.5%-9.5%, P < .01), autism spectrum disorder (1.1%-2.5%, P < .001), and intellectual disability (0.9%-1.2%, P < .05), but a significant decrease for any other developmental delay (4.7%-4.1%, P < .05). The prevalence of any developmental disability increased among boys, older children, non-Hispanic white and Hispanic children, children with private insurance only, children with birth weight >/=2500 g, and children living in urban areas and with less-educated mothers. CONCLUSIONS: The prevalence of developmental disability among US children aged 3 to 17 years increased between 2009 and 2017. Changes by demographic and socioeconomic subgroups may be related to improvements in awareness and access to health care.

We have learned much about the short-term sequelae of congenital Zika virus (ZIKV) infection since the Centers for Disease Control and Prevention activated its ZIKV emergency response in January 2016. Nevertheless, gaps remain in our understanding of the full spectrum of adverse health outcomes related to congenital ZIKV infection and how to optimize health in those who are affected. To address the remaining knowledge gaps, support affected children so they can reach their full potential, and make the best use of available resources, a carefully planned public health approach in partnership with pediatric health care providers is needed. An essential step is to use population-based data captured through surveillance systems to describe congenital Zika syndrome. Another key step is using collected data to investigate why some children exhibit certain sequelae during infancy and beyond, whereas others do not, and to describe the clustering of anomalies and the timing of when these anomalies occur, among other research questions. The final critical step in the public health framework for congenital Zika syndrome is an intervention strategy with evidence-based best practices for longer-term monitoring and care. Adherence to recommended evaluation and management procedures for infants with possible congenital ZIKV infection, including for those with less obvious developmental and medical needs at birth, is essential. It will take many years to fully understand the effects of ZIKV on those who are congenitally infected; however, the lifetime medical and educational costs as well as the emotional impact on affected children and families are likely to be substantial.

In November 2015, the Brazilian Ministry of Health (MOH) declared the Zika virus outbreak a public health emergency after an increase in microcephaly cases was reported in the northeast region of the country (1). During 2015-2016, 15 states in Brazil with laboratory-confirmed Zika virus transmission reported an increase in birth prevalence of microcephaly (2.8 cases per 10,000 live births), significantly exceeding prevalence in four states without confirmed transmission (0.6 per 10,000) (2). Although children with microcephaly and laboratory evidence of Zika virus infection have been described in early infancy (3), their subsequent health and development have not been well characterized, constraining planning for the care and support of these children and their families. The Brazilian MOH, the State Health Secretariat of Paraiba, and CDC collaborated on a follow-up investigation of the health and development of children in northeastern Brazil who were reported to national surveillance with microcephaly at birth. Nineteen children with microcephaly at birth and laboratory evidence of Zika virus infection were assessed through clinical evaluations, caregiver interviews, and review of medical records. At follow-up (ages 19-24 months), most of these children had severe motor impairment, seizure disorders, hearing and vision abnormalities, and sleep difficulties. Children with microcephaly and laboratory evidence of Zika virus infection have severe functional limitations and will require specialized care from clinicians and caregivers as they age.

Background: Zika virus is a newly recognized human teratogen; monitoring its impact on the birth prevalence of microcephaly and other adverse pregnancy outcomes will continue to be an urgent need in the United States and worldwide. Methods: When the Centers for Disease Control and Prevention (CDC) activated the Emergency Operations Center for the Zika virus outbreak response in January of 2016, public health leadership recognized that a joint, coordinated effort was required between activities focused on the effects of the infection among pregnant women and those focused on birth defects in fetuses and infants. Before the introduction of Zika virus in the Americas, population-based birth defects surveillance occurred independently of pregnancy surveillance activities. Results: The coordination of pregnancy surveillance and birth defects surveillance implemented through the CDC Zika virus response represents a paradigm shift. Conclusion: Coordination of these surveillance systems provides an opportunity to capture information from both a prospective and retrospective approach. This relatively modest investment in the public health infrastructure can continue to protect pregnant women and their infants during the ongoing response to Zika virus and in the next emergent threat to maternal and child health. Birth Defects Research 109:372–378, 2017.

PROBLEM/CONDITION: Mental, behavioral, and developmental disorders (MBDDs) begin in early childhood and often affect lifelong health and well-being. Persons who live in rural areas report more health-related disparities than those in urban areas, including poorer health, more health risk behaviors, and less access to health resources. REPORTING PERIOD: 2011-2012. DESCRIPTION OF SYSTEM: The National Survey of Children's Health (NSCH) is a cross-sectional, random-digit-dial telephone survey of parents or guardians that collects information on noninstitutionalized children aged <18 years in the United States. Interviews included indicators of health and well-being, health care access, and family and community characteristics. Using data from the 2011-2012 NSCH, this report examines variations in health care, family, and community factors among children aged 2-8 years with and without MBDDs in rural and urban settings. Restricting the data to U.S. children aged 2-8 years with valid responses for child age and sex, each MBDD, and zip code resulted in an analytic sample of 34,535 children; MBDD diagnosis was determined by parent report and was not validated with health care providers or medical records. RESULTS: A higher percentage of all children in small rural and large rural areas compared with all children in urban areas had parents who reported experiencing financial difficulties (i.e., difficulties meeting basic needs such as food and housing). Children in all rural areas more often lacked amenities and lived in a neighborhood in poor condition. However, a lower percentage of children in small rural and isolated areas had parents who reported living in an unsafe neighborhood, and children in isolated areas less often lived in a neighborhood lacking social support, less often lacked a medical home, and less often had a parent with fair or poor mental health. Across rural subtypes, approximately one in six young children had a parent-reported MBDD diagnosis. A higher prevalence was found among children in small rural areas (18.6%) than in urban areas (15.2%). In urban and the majority of rural subtypes, children with an MBDD more often lacked a medical home, had a parent with poor mental health, lived in families with financial difficulties, and lived in a neighborhood lacking physical and social resources than children without an MBDD within each of those community types. Only in urban areas did a higher percentage of children with MBDDs lack health insurance than children without MBDDs. After adjusting for race/ethnicity and poverty among children with MBDDs, those in rural areas more often had a parent with poor mental health and lived in resource-low neighborhoods than those in urban areas. INTERPRETATION: Certain health care, family, and community disparities were more often reported among children with MBDDS than among children without MBDDs in rural and urban areas. PUBLIC HEALTH ACTION: Collaboration involving health care, family, and community services and systems can be used to address fragmented services and supports for children with MBDDs, regardless of whether they live in urban or rural areas. However, addressing differences in health care, family, and community factors and leveraging community strengths among children who live in rural areas present opportunities to promote health among children in rural communities.

Zika virus infection during pregnancy can cause serious brain abnormalities, but the full range of adverse outcomes is unknown (1). To better understand the impact of birth defects resulting from Zika virus infection, the CDC surveillance case definition established in 2016 for birth defects potentially related to Zika virus infection* (2) was retrospectively applied to population-based birth defects surveillance data collected during 2013-2014 in three areas before the introduction of Zika virus (the pre-Zika years) into the World Health Organization's Region of the Americas (Americas) (3). These data, from Massachusetts (2013), North Carolina (2013), and Atlanta, Georgia (2013-2014), included 747 infants and fetuses with one or more of the birth defects meeting the case definition (pre-Zika prevalence = 2.86 per 1,000 live births). Brain abnormalities or microcephaly were the most frequently recorded (1.50 per 1,000), followed by neural tube defects and other early brain malformationsdagger (0.88), eye abnormalities without mention of a brain abnormality (0.31), and other consequences of central nervous system (CNS) dysfunction without mention of brain or eye abnormalities (0.17). During January 15-September 22, 2016, the U.S. Zika Pregnancy Registry (USZPR) reported 26 infants and fetuses with these same defects among 442 completed pregnancies (58.8 per 1,000) born to mothers with laboratory evidence of possible Zika virus infection during pregnancy (2). Although the ascertainment methods differed, this finding was approximately 20 times higher than the proportion of one or more of the same birth defects among pregnancies during the pre-Zika years. These data demonstrate the importance of population-based surveillance for interpreting data about birth defects potentially related to Zika virus infection.

The introduction of Zika virus into the Region of the Americas (Americas) and the subsequent increase in cases of congenital microcephaly resulted in activation of CDC's Emergency Operations Center on January 22, 2016, to ensure a coordinated response and timely dissemination of information, and led the World Health Organization to declare a Public Health Emergency of International Concern on February 1, 2016. During the past year, public health agencies and researchers worldwide have collaborated to protect pregnant women, inform clinicians and the public, and advance knowledge about Zika virus (Figure 1). This report summarizes 10 important contributions toward addressing the threat posed by Zika virus in 2016. To protect pregnant women and their fetuses and infants from the effects of Zika virus infection during pregnancy, public health activities must focus on preventing mosquito-borne transmission through vector control and personal protective practices, preventing sexual transmission by advising abstention from sex or consistent and correct use of condoms, and preventing unintended pregnancies by reducing barriers to access to highly effective reversible contraception.

Public health focus is now on Zika virus, a mosquito-borne flavivirus that emerged in the Americas in 2015 with new intensity and alarming potential sequelae, after circulating in Africa and Southeast Asia for decades with rare reports of outbreaks and no recognized serious adverse outcomes. Paralleling the rapid spread of chikungunya in the Americas in 2013,1 Zika virus has affected many of the same areas since its arrival in Brazil in early 2015.2 By February 26, 2016, local transmission had been reported from 31 countries and territories in the Americas, with concomitant outbreaks in Cape Verde and the Pacific Islands.3 In the United States, as of March 2, 2016, 153 cases, all travel associated, have been reported to ArboNet from 28 states and the District of Columbia; among the 108 cases reported to ArboNet from US territories, all but 1 have been locally acquired, with most cases reported from Puerto Rico (http://www.cdc.gov/zika/geo/united-states.html). Further spread throughout tropical areas in the Americas is likely. For most individuals, the Zika virus infection is associated with mild and self-limited clinical symptoms, but it is increasingly being linked to prenatal impacts, most notably congenital microcephaly.4–6 Better understanding of this arboviral disease, including the epidemiology, clinical outcomes, nonmosquito modes of transmission, immune response, pathophysiology, and clinical course, is critically needed. The systematic review by Paixão et al.7 of 52 studies on Zika virus in this issue of AJPH yields valuable information in these areas that can help guide prevention and control efforts.

BACKGROUND: We investigated the prevalence of receipt of special education services among children with congenital heart defects (CHDs) compared with children without birth defects. METHODS: Children born from 1982 to 2004 in metropolitan Atlanta with CHDs (n = 3744) were identified from a population-based birth defect surveillance program; children without birth defects (n = 860 715) were identified from birth certificates. Cohorts were linked to special education files for the 1992-2012 school years to identify special education services. Children with noncardiac defects or genetic syndromes were excluded; children with CHDs were classified by presence or absence of critical CHDs (ie, CHDs requiring intervention by age one year). We evaluated the prevalence of receipt of special education services and prevalence rate ratios using children without birth defects as a reference. RESULTS: Compared with children without birth defects, children with CHDs were 50% more likely to receive special education services overall (adjusted prevalence rate ratio [aPRR] = 1.5; 95% confidence interval [CI]: 1.4-1.7). Specifically, they had higher prevalence of several special education categories including: intellectual disability (aPRR = 3.8; 95% CI: 2.8-5.1), sensory impairment (aPRR = 3.0; 95% CI: 1.8-5.0), other health impairment (aPRR = 2.8; 95% CI: 2.2-3.5), significant developmental delay (aPRR = 1.9; 95% CI: 1.3-2.8), and specific learning disability (aPRR = 1.4; 95% CI: 1.1-1.7). For most special education services, the excess prevalence did not vary by presence of critical CHDs. CONCLUSIONS: Children with CHDs received special education services more often than children without birth defects. These findings highlight the need for special education services and the importance of developmental screening for all children with CHDs.

We examined prevalence of diagnosed autism spectrum disorder (ASD) and age at diagnosis according to child's race/ethnicity and primary household language. From the 2009-2010 National Survey of Children with Special Health Care Needs, we identified 2729 3-17-year-old US children whose parent reported a current ASD diagnosis. We compared ASD prevalence, mean diagnosis age, and percentage with later diagnoses (≥5 years) across racial/ethnic/primary household language groups: non-Hispanic-white, any language (NHW); non-Hispanic-black, any language (NHB); Hispanic-any-race, English (Hispanic-English); and Hispanic-any-race, other language (Hispanic-Other). We assessed findings by parent-reported ASD severity level and adjusted for family sociodemographics. ASD prevalence estimates were 15.3 (NHW), 10.4 (NHB), 14.1 (Hispanic-English), and 5.2 (Hispanic-Other) per 1000 children. Mean diagnosis age was comparable across racial/ethnic/language groups for 3-4-year-olds. For 5-17-year-olds, diagnosis age varied by race/ethnicity/language and also by ASD severity. In this group, NHW children with mild/moderate ASD had a significantly higher proportion (50.8 %) of later diagnoses than NHB (33.5 %) or Hispanic-Other children (18.0 %). However, NHW children with severe ASD had a comparable or lower (albeit non-significant) proportion (16.4 %) of later diagnoses than NHB (37.8 %), Hispanic-English (30.8 %), and Hispanic-Other children (12.0 %). While NHW children have comparable ASD prevalence and diagnosis age distributions as Hispanic-English children, they have both higher prevalence and proportion of later diagnoses than NHB and Hispanic-Other children. The diagnosis age findings were limited to mild/moderate cases only. Thus, the prevalence disparity might be primarily driven by under-representation (potentially under-identification) of older children with mild/moderate ASD in the two minority groups.

The findings described in this supplement can help improve collaboration among public health and other stakeholders who influence infant, child, and adolescent health (e.g., parents or guardians and their employers, health plans, health professionals, schools, child care facilities, community groups, and voluntary associations) to increase the use of selected clinical preventive services among U.S. infants, children, and adolescents. Increased use can substantially reduce illness and long-term disability and improve health and quality of life. This supplement underscores that the use of the clinical preventive services among U.S. infants, children, and adolescents is not optimal and is variable, ranging from <10% to approximately 85%, depending on the particular service. Use was particularly low for developmental screening and receipt of dental preventive services in young children, and for human papillomavirus (HPV) vaccination and tobacco cessation assistance, including counseling, in adolescents; however, opportunities exist to improve use of all of these services. Children and adolescents with no insurance and those with no usual source of health care (if available for analysis) were the groups least likely to have used the services. Use among the uninsured ranged from 1-39 percentage points below the general population averages, suggesting that improvements in insurance coverage that will result from the implementation of health-care reform are likely to increase use of these clinical preventive services. In 2012, a total of 4.9 million children (6.6% of children) were uninsured at the time of interview, and approximately 15% of eligible children in the United States are not enrolled in Medicaid and Children's Health Insurance Program (CHIP) programs. In addition, although opportunities exist for greater insurance coverage and for use of recommended clinical preventive services under the Patient Protection and Affordable Care Act of 2010 (P.L. 111-148), as amended by the Health Care and Education Reconciliation Act of 2010 (P.L. 111-152, together referred to as the Affordable Care Act [ACA]), a survey among the uninsured found a low level of awareness of the Health Insurance Marketplace (or Health Insurance Exchange) that can be used by families to acquire insurance or Medicaid coverage. The survey highlights the importance of focused efforts by governmental health agencies and other stakeholders to enroll uninsured children and adolescents in health plans. Also, although use of clinical preventive services in insured populations was greater than among the uninsured, use among the insured was generally <85%, and often much less. Therefore, having health insurance coverage alone might not be sufficient to optimize use of clinical preventive services, and additional measures to improve use probably will be necessary.

This supplement is the second of a series of periodic reports from a CDC initiative to monitor and report on the use of a set of selected clinical preventive services in the U.S. population in the context of recent national initiatives to improve access to and use of such services. Increasing the use of these services can result in substantial reductions in the burden of illness, death, and disability and lower treatment costs. This supplement focuses on services to improve the health of U.S. infants, children, and adolescents. The majority of clinical preventive services for infants, children, and adolescents are provided by the health-care sector. Public health agencies play important roles in increasing the use of these services by identifying and implementing policies that are effective in increasing use of the services and by collaborating with stakeholders to conduct programs to improve use. Recent health-reform initiatives, including efforts to increase the accessibility and affordability of preventive services, fund community prevention programs, and improve the use of health information technologies, offer opportunities to improve use of preventive services. This supplement, which follows a previous report on adult services, provides baseline information on the use of a set of selected clinical preventive services to improve the health of infants, children, and adolescents before implementation of these recent initiatives and discusses opportunities to increase the use of such services. This information can help public health practitioners, in collaboration with other stakeholders that have key roles in improving infant, child, and adolescent health (e.g., parents or guardians and their employers, health plans, health professionals, schools, child care facilities, community groups, and voluntary associations), understand the potential benefits of the recommended services, address the problem of underuse, and identify opportunities to apply effective strategies to improve use and foster accountability among stakeholders.

At each stage from birth to young adulthood, the use of clinical preventive services (CPSs) provides an opportunity to intervene early to improve outcomes for many costly and complex conditions and to modify important disease-defining risk factors.1 A number of important provisions of the Affordable Care Act (ACA) will provide impetus to improve the use of CPSs, in particular, the provision that such services are now covered without cost sharing.2 | The Centers for Disease Control and Prevention (CDC) has collected baseline data and reported detailed information on a select set of CPSs for children to serve as a benchmark to measure change following ACA implementation.3 | The selected CPSs were identified by the CDC because they represent important public health issues for which CPSs exist, the service was underused before ACA implementation, and national data (largely parent and self-report or provider office-based surveys) were available to establish a baseline (defined as prior to 2012). Other important CPSs for children were not included in the report because of the lack of national data to track the clinical service (eg, screening for body mass index was considered, but surveillance data on screening in clinical care were not available), or the utilization of the CPS was already at high levels (eg, many infant immunizations). Not all of the CPSs included in the CDC report have a US Preventive Services Task Force (USPSTF) grade A or B or a comparable evidence review process recommendation (eg, Advisory Committee on Immunization Practices); but all, with the exception of dental visits and preventive services by dentists, like dental sealants, are now covered under the ACA.3

Newborn screening (NBS) began 50 years ago with the ability to screen for phenylketonuria from dried-blood spots and prevent long-term disability through dietary intervention. Now nearly all of the 4 million infants born in the United States are screened for a wide array of significant medical conditions by using dried-blood spots and point-of-care tests, leading to early diagnosis and treatment of more than 12 500 newborns each year. NBS is an unqualified public health success; it saves lives, prevents severe disability, and is a good use of limited health care dollars. NBS is not a test, but a complex system that includes the initial screen to identify infants with a high probability of having the condition, a follow-up diagnostic test to identify true cases, and the ongoing treatment of the condition. To make this system efficient and effective requires several key players, including public health, primary and specialty care providers, and families. On this anniversary of NBS, we would like to share our reflections on these 3 perspectives, acknowledging that they capture only some of the important considerations and advances in NBS.

BACKGROUND: In a recent study, high maternal periconceptional intake of vitamin E was found to be associated with risk of congenital heart defects (CHDs). To explore this association further, we investigated the association between total daily vitamin E intake and selected birth defects. METHODS: We analyzed data from 4525 controls and 8665 cases from the 1997 to 2005 National Birth Defects Prevention Study. We categorized estimated periconceptional energy-adjusted total daily vitamin E intake from diet and supplements into quartiles (referent, lowest quartile). Associations between quartiles of energy-adjusted vitamin E intake and selected birth defects were adjusted for demographic, lifestyle, and nutritional factors. RESULTS: We observed a statistically significant association with the third quartile of vitamin E intake (odds ratio [OR], 1.17; 95% confidence interval [CI], 1.01-1.35) and all CHDs combined. Among CHD sub-types, we observed associations with left ventricular outflow tract obstruction defects, and its sub-type, coarctation of the aorta and the third quartile of vitamin E intake. Among defects other than CHDs, we observed associations between anorectal atresia and the third quartile of vitamin E intake (OR, 1.66; 95% CI, 1.01-2.72) and hypospadias and the fourth quartile of vitamin E intake (OR, 1.42; 95% CI, 1.09-1.87). CONCLUSION: Selected quartiles of energy-adjusted estimated total daily vitamin E intake were associated with selected birth defects. However, because these few associations did not exhibit exposure-response patterns consistent with increasing risk associated with increasing intake of vitamin E, further studies are warranted to corroborate our findings.

We estimated the prevalence of obesity, overweight, and underweight among US adolescents with and without autism and other learning and behavioral developmental disabilities (DDs) and assessed the health consequences of obesity among adolescents with DDs. From the 2008 to 2010 National Health Interview Survey, we selected 9,619 adolescents ages 12-17 years. Parent respondents reported weight, height, presence of DDs and health conditions. We calculated body mass index (BMI) and defined obesity, overweight, and underweight as ≥95th, ≥85th to <95th, and <5th percentiles, respectively, using established criteria. We created mutually-exclusive DD subgroups using the following order of precedence: autism; intellectual disability; attention-deficit-hyperactivity-disorder; learning disorder/other developmental delay. We compared BMI outcomes among adolescents in each DD group versus adolescents without DDs using multivariable logistic regression. Socio-demographic factors and birthweight were included as confounders. Estimates were weighted to reflect the US population. Both obesity and underweight prevalences were higher among adolescents with than without DDs [adjusted prevalence ratios (aPR) 1.5 (1.25-1.75) and 1.5 (1.01-2.20), respectively]. Obesity was elevated among adolescents with all DD types, and was highest among the autism subgroup [aPR 2.1 (1.44-3.16)]. Adolescents with either a DD or obesity had higher prevalences of common respiratory, gastrointestinal, dermatological and neurological conditions/symptoms than nonobese adolescents without DDs. Adolescents with both DDs and obesity had the highest estimates for most conditions. Obesity is high among adolescents with autism and other DDs and poses added chronic health risks. Obesity prevention and management approaches for this vulnerable population subgroup need further consideration.

PURPOSE: Treatment of inherited metabolic disorders is accomplished by use of specialized diets employing medical foods and medically necessary supplements. Families seeking insurance coverage for these products express concern that coverage is often limited; the extent of this challenge is not well defined. METHODS: To learn about limitations in insurance coverage, parents of 305 children with inherited metabolic disorders completed a paper survey providing information about their use of medical foods, modified low-protein foods, prescribed dietary supplements, and medical feeding equipment and supplies for treatment of their child's disorder as well as details about payment sources for these products. RESULTS: Although nearly all children with inherited metabolic disorders had medical coverage of some type, families paid "out of pocket" for all types of products. Uncovered spending was reported for 11% of families purchasing medical foods, 26% purchasing supplements, 33% of those needing medical feeding supplies, and 59% of families requiring modified low-protein foods. Forty-two percent of families using modified low-protein foods and 21% of families using medical foods reported additional treatment-related expenses of $100 or more per month for these products. CONCLUSION: Costs of medical foods used to treat inherited metabolic disorders are not completely covered by insurance or other resources.

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) was established in April 2001 as a result of The Children’s Health Act of 2000.1 The supporters of the center’s creation wanted to raise the visibility of child health and disability at the CDC. From its inception, the NCBDDD included the established programs in birth defects, genetic disorders, developmental disabilities and disabilities and health, with a more than 30-year history in surveillance, research, and public health practice, including the training of public health professionals in these respective fields. | In 2003, the NCBDDD expanded with the addition of the blood disorders program, which initially had been established in response to the discovery that HIV, a bloodborne infection, highly affected people with hemophilia who required treatments using blood products. This led to the development of a comprehensive program to ensure optimal care for this and other populations affected by nonmalignant blood disorders.2 The current paper examines the health impact of the center’s work that was highlighted in a year-long reflection,“10 Years of Service”3;and provides a framework for how the NCBDDD will move forward with a renewed emphasis on enhancing public health and healthcare-system capacity to have greater health impact for the populations served.

Using vital registration and verbal autopsy, Li Liu and colleagues (June 9, p 2151)1 attribute 270 000 deaths worldwide in children younger than 5 years to congenital anomalies (chromosomal disorders and congenital malformations)—3·5% of the total, or 2·0 per 1000 births. Liu and colleagues' comments that medically certified vital registration data are available for only 2·7% of under-5 deaths, and that verbal autopsy methods “are subject to inherent misclassification errors”, are especially applicable to congenital anomalies, since correct diagnosis often requires advanced diagnostic facilities. Consequently, valid mortality rates are obtainable only for high-income settings, where mortality has been greatly reduced by multiple interventions. In lower-income settings, most congenital anomalies remain undiagnosed, and the associated mortality is inevitably mis-attributed. | The Global Burden of Disease Congenital Expert Group (of which we were members), starting from the known birth prevalence of major congenital anomalies (in the absence of intervention) of 22·5 per 1000 births worldwide2, 3, 4 and known mortality in the absence of diagnosis and care, estimated a minimum of 10 under-5 deaths per 1000 births worldwide—ie, more than four times higher than Liu and colleagues' estimate. In Hungary in 1970–80, congenital anomalies caused around 6·5 under-5 deaths per 1000 births even though diagnosis and care were generally available.3 Currently in the UK they cause around 2·5 under-5 deaths per 1000 births.5 Liu and colleagues' estimates are lower than this for almost all WHO regions. (Although their report in fact only covers neonatal deaths, this omission hardly affects the difference between our estimates.)

BACKGROUND: Limited studies suggest the prevalence of autism spectrum disorders (ASD) varies by whether maternal and child birth country are discordant. OBJECTIVE/HYPOTHESIS: We explored associations between ASD and maternal and paternal nativity in a sample of US-born non-Hispanic white (NHW, n = 37,265) and US-born Hispanic (n = 4,690) children in the 2007 National Survey of Children's Health (NSCH). METHODS: We assessed ASD prevalence within race-ethnicity and parental nativity subgroups. Prevalence ratios (aPR), comparing each group to NHW children with 2 US-born parents, were adjusted for child age, sex, and receipt of care in a medical home. Estimates were weighted to reflect US noninstitutionalized children. Standard errors were adjusted to account for the complex sample design. RESULTS: In NHW children with 2 US-born parents, ASD prevalence was 1.19%; estimates were similar for NHW children with a foreign-born mother or father. There was a striking heterogeneity between Hispanic children with 2 US-born versus 2 foreign-born parents (ASD prevalence 2.39% versus 0.31%, p = .05). Even after adjustment, PRs comparing ASD prevalence in Hispanic versus NHW children were vastly different for Hispanic subgroups, suggesting a substantially lower prevalence for Hispanic children with both parents foreign-born (aPR 0.2, 95% confidence interval 0.1-0.5) and a higher prevalence for Hispanic children with both parents US-born (aPR 2.0 [0.8-4.6]). CONCLUSIONS: Previous studies comparing ASD prevalence between NHW and Hispanic children based on a composite Hispanic grouping without consideration of parental nativity likely missed important differences between these racial-ethnic groups. Continuing efforts toward improving early identification in Hispanic children are needed.

Studies document various associated health risks for children with developmental disabilities (DDs). Further study is needed by disability type. Using the 2006-2010 National Health Interview Surveys, we assessed the prevalence of numerous medical conditions (e.g. asthma, frequent diarrhea/colitis, seizures), health care use measures (e.g. seeing a medical specialist and >9 office visits in past year), health impact measures (e.g. needing help with personal care), and selected indicators of unmet health needs (e.g. unable to afford needed prescription medications) among a nationally representative sample of children ages 3-17 years, with and without DDs. Children in four mutually exclusive developmental disability groups: autism (N=375), intellectual disability (ID) without autism (N=238); attention-deficit/hyperactivity disorder (ADHD) without autism or ID (N=2901); and learning disability (LD) or other developmental delay without ADHD, autism, or ID (N=1955); were compared to children without DDs (N=35,775) on each condition or health care measure of interest. Adjusted odds ratios (aORs) were calculated from weighted logistic regression models that accounted for the complex sample design. Prevalence estimates for most medical conditions examined were moderately to markedly higher for children in all four DD groups than children without DDs. Most differences were statistically significant after adjustment for child sex, age, race/ethnicity, and maternal education. Children in all DD groups also had significantly higher estimates for health care use, impact, and unmet needs measures than children without DDs. This study provides empirical evidence that children with DDs require increased pediatric and specialist services, both for their core functional deficits and concurrent medical conditions.

The US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders in Newborns and Children provides guidance on reducing the morbidity and mortality associated with heritable disorders detectable through newborn screening. Efforts to systematically evaluate health outcomes, beyond long-term survival, with a few exceptions, are just beginning. To facilitate these nascent efforts, the US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders in Newborns and Children initiated a project to define the major overarching questions to be answered to assure that newborn screening is meeting its goal of achieving the best quality outcome for the affected children and their families. The questions identified follow the central components of long-term follow-up-care coordination, evidence-based treatment, continuous quality improvement, and new knowledge discovery-and are framed from the perspectives of the state and nation, primary and specialty healthcare providers, and the impacted families. These overarching questions should be used to guide the development of long-term follow-up data systems, quality health indicators, and specific data elements for evaluating the newborn screening system.

BACKGROUND: Studies suggest autism spectrum disorders (ASDs) are associated with high parenting stress and aggravation. Research on specific risk factors is needed. OBJECTIVE/HYPOTHESES: To assess aggravation level among parents of children with and without ASDs. METHODS: The sample of 73,030 children aged 4 to 17 years in the 2007 National Survey of Children's Health and their parent respondents were divided into mutually exclusive groups based on child ASD status and other special health care needs. Adjusted prevalence ratios (aPR) for associations between a high Aggravation in Parenting scale score and various risk factors were computed from multivariable models. RESULTS: High-aggravation percentages were comparable for parents of children with a current ASD (36.6%), ASD reported previously but not currently (35.2%), and another (non-ASD) developmental problem (31.2%) but were significantly lower for parents of children with other special health care needs (6.5%) and no special health care needs (5.1%). Within the current-ASD group, high aggravation was associated with young child age (aPR = 1.8 [1.2-2.6]), lack of health insurance (aPR = 1.5 [1.0-2.4]), lack of a medical home (aPR = 2.2 [1.4-3.5]), recent child mental health treatment (aPR = 2.1 [1.5-3.0]), lack of parenting emotional support (aPR = 1.5 [1.1-2.1]), and ASD severity (aPR = 1.4 [1.0-1.6]). Some of these same factors were associated with aggravation in the non-ASD groups. However, the medical home finding was specific to the ASD groups. CONCLUSIONS: Parenting a child with ASD is associated with high aggravation; however, there is variability within health care and social support subgroups. Strategies to strengthen medical home components for children with ASDs should be considered.

OBJECTIVE: To fill gaps in crucial data needed for health and educational planning, we determined the prevalence of developmental disabilities in US children and in selected populations for a recent 12-year period. PARTICIPANTS AND METHODS: We used data on children aged 3 to 17 years from the 1997-2008 National Health Interview Surveys, which are ongoing nationally representative samples of US households. Parent-reported diagnoses of the following were included: attention deficit hyperactivity disorder; intellectual disability; cerebral palsy; autism; seizures; stuttering or stammering; moderate to profound hearing loss; blindness; learning disorders; and/or other developmental delays. RESULTS: Boys had a higher prevalence overall and for a number of select disabilities compared with girls. Hispanic children had the lowest prevalence for a number of disabilities compared with non-Hispanic white and black children. Low income and public health insurance were associated with a higher prevalence of many disabilities. Prevalence of any developmental disability increased from 12.84% to 15.04% over 12 years. Autism, attention deficit hyperactivity disorder, and other developmental delays increased, whereas hearing loss showed a significant decline. These trends were found in all of the sociodemographic subgroups, except for autism in non-Hispanic black children. CONCLUSIONS: Developmental disabilities are common and were reported in approximately 1 in 6 children in the United States in 2006-2008. The number of children with select developmental disabilities (autism, attention deficit hyperactivity disorder, and other developmental delays) has increased, requiring more health and education services. Additional study of the influence of risk-factor shifts, changes in acceptance, and benefits of early services is needed.

BACKGROUND: Many health conditions have been described in children with Down syndrome (DS). However, there are little comparative population-based data available. OBJECTIVE/HYPOTHESES: We sought to examine the health impacts associated with DS and other disabling conditions in U.S. children included in the 2005-2006 National Survey of Children with Special Health Care Needs. METHODS: We assessed numerous health and functional outcomes in children with DS and without DS but with (1) mental retardation/developmental delay and another developmental disability associated with a high functional impact; (2) mental retardation/developmental delay but no co-occurring high-impact disability; (3) other special health care needs; and (4) no special health care needs (referent). RESULTS: Children with DS and in all 3 special health care needs comparison groups had substantially more health and functional difficulties than did the referent sample. Overall, children with DS were fairly comparable to children in the other mental retardation/developmental delay groups on health indicators; however, young children with DS were more likely than young children in both "other mental retardation" groups to have difficulties with breathing/respiration and swallowing/digestion/metabolism. Children with both DS and mental retardation associated with another high-impact disability had the highest levels of functional difficulties, unmet health needs, and family financial impacts. Nearly 60% of families in both groups provided home health care; in over 40%, a family member stopped working because of the child's condition; and about 40% reported the child's condition caused financial problems. CONCLUSIONS: Children with DS can have substantial health and functional difficulties, with numerous financial impacts on their families.

Infertility treatments that include ovulation stimulation, both assisted reproductive technologies (ARTs) and non-ART ovulation stimulation, are associated with increased risks of multiple birth and concomitant sequelae and adverse outcomes, even among singletons. While a US surveillance system for ART-induced births is ongoing, no population-based tracking system exists for births resulting from non-ART treatments. The authors developed a multistage model to estimate the uncertain proportion of US infants born in 2005 who were conceived by using non-ART ovulation treatments. Using published surveillance data, they estimated proportions of US multiple births conceived naturally and by ART and assumed that the remainder were conceived with non-ART treatments. They used Bayesian meta-analyses to summarize published clinical studies on the multiple-gestation risk associated with non-ART ovulation treatments, applied a fetal survival factor, and used this multiple-birth risk estimate and their own estimate of the proportion of US multiple births attributable to non-ART ovulation stimulation to estimate the total (and, through subtraction, singleton) proportion of infants conceived with such treatments. On the basis of the model, the authors estimate that 4.6% of US infants born in 2005 (95% uncertainty range: 2.8%-7.1%) resulted from non-ART ovulation treatments. Notably, this figure is 4 times greater than the ART contribution.