Last data update: Apr 18, 2025. (Total: 49119 publications since 2009)
Records 1-30 (of 37 Records) |
Query Trace: Van Naarden Braun K[original query] |
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Comparison of autism spectrum disorder surveillance status based on two different diagnostic schemes: Findings from the Metropolitan Atlanta Developmental Disabilities Surveillance Program, 2012
Wiggins L , Christensen D , Van Naarden Braun K , Martin L , Baio J . PLoS One 2018 13 (11) e0208079 For the first time, the Autism and Developmental Disabilities Monitoring Network (ADDM) at the Centers for Disease Control and Prevention (CDC) reported prevalence estimates based on two different diagnostic schemes in the 2014 surveillance period. Results found substantial agreement between surveillance case status based on Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition-Text Revision (DSM-IV-TR) criteria and DSM-5 criteria ASD (kappa = 0.85). No study has replicated this agreement in another independent sample of surveillance records. The objectives of this study were to (1) replicate agreement between surveillance status based on DSM-IV-TR criteria and DSM-5 criteria for ASD, (2) quantify the number of children who met surveillance status based on only DSM-IV-TR criteria and only DSM-5 criteria for ASD, and (3) evaluate differences in characteristics of these latter two groups of children. The study sample was 8-year-old children who had health and education records reviewed for ASD surveillance in metropolitan Atlanta, GA in the 2012 surveillance year. Results found substantial agreement between child's surveillance status using DSM-IV-TR criteria and DSM-5 criteria for ASD (kappa = 0.80). There were no differences in child race/ethnicity, child sex, or intellectual disability between surveillance status defined by DSM-IV-TR criteria and that defined by DSM-5 criteria. Children who met surveillance status based on DSM-IV-TR criteria, but not DSM-5 criteria, were more likely to have developmental concerns and evaluations in the first three years. Children who met surveillance status based on DSM-5 criteria, but not DSM-IV-TR criteria, were more likely to have been receiving autism-related services or previously diagnosed with ASD. These results suggest that surveillance status of ASD based on DSM-5 criteria is largely comparable to that based on DSM-IV-TR criteria, and identifies children with similar demographic and intellectual characteristics. |
Trends in documented co-occurring conditions in children with autism spectrum disorder, 2002-2010
Rubenstein E , Schieve L , Wiggins L , Rice C , Van Naarden Braun K , Christensen D , Durkin M , Daniels J , Lee LC . Res Dev Disabil 2018 83 168-178 BACKGROUND: Autism spectrumdisorder (ASD) commonly presents with co-occurring medical conditions (CoCs). Little is known about patterns in CoCs in a time of rising ASD prevalence. AIMS: To describe trends in number and type of documented CoCs in 8-year-old children with ASD. METHODS: We used Autism and Developmental Disabilities Monitoring Network (ADDM) data, a multi-source active surveillance system monitoring ASD prevalence among 8-year-old children across the US. Data from surveillance years 2002, 2006, 2008, and 2010 were used to describe trends in count, categories, and individual CoCs. RESULTS: Mean number of CoCs increased from 0.94 CoCs in 2002 to 1.06 CoCs in 2010 (p < 0.001). The percentage of children with ASD with any CoC increased from 44.5% to 56.4% (p < 0.001). CoCs with the greatest increases were in general developmental disability (10.4% to 14.5%), language disorder (18.9% to 23.6%), and motor developmental disability (10.5% to 15.6%). Sex modified the relationship between developmental (P = 0.02) and psychiatric (P < 0.001) CoCs and surveillance year. Race/ethnicity modified the relationship between neurological conditions (P = 0.04) and surveillance year. CONCLUSIONS: The increase in the percentage of children with ASD and CoCs may suggest the ASD phenotype has changed over time or clinicians are more likely to diagnose CoCs. |
Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014.
Baio J , Wiggins L , Christensen DL , Maenner MJ , Daniels J , Warren Z , Kurzius-Spencer M , Zahorodny W , Robinson Rosenberg C , White T , Durkin MS , Imm P , Nikolaou L , Yeargin-Allsopp M , Lee LC , Harrington R , Lopez M , Fitzgerald RT , Hewitt A , Pettygrove S , Constantino JN , Vehorn A , Shenouda J , Hall-Lande J , Van Naarden Braun K , Dowling NF . MMWR Surveill Summ 2018 67 (6) 1-23 ![]() PROBLEM/CONDITION: Autism spectrum disorder (ASD). PERIOD COVERED: 2014. DESCRIPTION OF SYSTEM: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system that provides estimates of the prevalence of autism spectrum disorder (ASD) among children aged 8 years whose parents or guardians reside within 11 ADDM sites in the United States (Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin). ADDM surveillance is conducted in two phases. The first phase involves review and abstraction of comprehensive evaluations that were completed by professional service providers in the community. Staff completing record review and abstraction receive extensive training and supervision and are evaluated according to strict reliability standards to certify effective initial training, identify ongoing training needs, and ensure adherence to the prescribed methodology. Record review and abstraction occurs in a variety of data sources ranging from general pediatric health clinics to specialized programs serving children with developmental disabilities. In addition, most of the ADDM sites also review records for children who have received special education services in public schools. In the second phase of the study, all abstracted information is reviewed systematically by experienced clinicians to determine ASD case status. A child is considered to meet the surveillance case definition for ASD if he or she displays behaviors, as described on one or more comprehensive evaluations completed by community-based professional providers, consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) diagnostic criteria for autistic disorder; pervasive developmental disorder-not otherwise specified (PDD-NOS, including atypical autism); or Asperger disorder. This report provides updated ASD prevalence estimates for children aged 8 years during the 2014 surveillance year, on the basis of DSM-IV-TR criteria, and describes characteristics of the population of children with ASD. In 2013, the American Psychiatric Association published the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), which made considerable changes to ASD diagnostic criteria. The change in ASD diagnostic criteria might influence ADDM ASD prevalence estimates; therefore, most (85%) of the records used to determine prevalence estimates based on DSM-IV-TR criteria underwent additional review under a newly operationalized surveillance case definition for ASD consistent with the DSM-5 diagnostic criteria. Children meeting this new surveillance case definition could qualify on the basis of one or both of the following criteria, as documented in abstracted comprehensive evaluations: 1) behaviors consistent with the DSM-5 diagnostic features; and/or 2) an ASD diagnosis, whether based on DSM-IV-TR or DSM-5 diagnostic criteria. Stratified comparisons of the number of children meeting either of these two case definitions also are reported. RESULTS: For 2014, the overall prevalence of ASD among the 11 ADDM sites was 16.8 per 1,000 (one in 59) children aged 8 years. Overall ASD prevalence estimates varied among sites, from 13.1-29.3 per 1,000 children aged 8 years. ASD prevalence estimates also varied by sex and race/ethnicity. Males were four times more likely than females to be identified with ASD. Prevalence estimates were higher for non-Hispanic white (henceforth, white) children compared with non-Hispanic black (henceforth, black) children, and both groups were more likely to be identified with ASD compared with Hispanic children. Among the nine sites with sufficient data on intellectual ability, 31% of children with ASD were classified in the range of intellectual disability (intelligence quotient [IQ] <70), 25% were in the borderline range (IQ 71-85), and 44% had IQ scores in the average to above average range (i.e., IQ >85). The distribution of intellectual ability varied by sex and race/ethnicity. Although mention of developmental concerns by age 36 months was documented for 85% of children with ASD, only 42% had a comprehensive evaluation on record by age 36 months. The median age of earliest known ASD diagnosis was 52 months and did not differ significantly by sex or race/ethnicity. For the targeted comparison of DSM-IV-TR and DSM-5 results, the number and characteristics of children meeting the newly operationalized DSM-5 case definition for ASD were similar to those meeting the DSM-IV-TR case definition, with DSM-IV-TR case counts exceeding DSM-5 counts by less than 5% and approximately 86% overlap between the two case definitions (kappa = 0.85). INTERPRETATION: Findings from the ADDM Network, on the basis of 2014 data reported from 11 sites, provide updated population-based estimates of the prevalence of ASD among children aged 8 years in multiple communities in the United States. The overall ASD prevalence estimate of 16.8 per 1,000 children aged 8 years in 2014 is higher than previously reported estimates from the ADDM Network. Because the ADDM sites do not provide a representative sample of the entire United States, the combined prevalence estimates presented in this report cannot be generalized to all children aged 8 years in the United States. Consistent with reports from previous ADDM surveillance years, findings from 2014 were marked by variation in ASD prevalence when stratified by geographic area, sex, and level of intellectual ability. Differences in prevalence estimates between black and white children have diminished in most sites, but remained notable for Hispanic children. For 2014, results from application of the DSM-IV-TR and DSM-5 case definitions were similar, overall and when stratified by sex, race/ethnicity, DSM-IV-TR diagnostic subtype, or level of intellectual ability. PUBLIC HEALTH ACTION: Beginning with surveillance year 2016, the DSM-5 case definition will serve as the basis for ADDM estimates of ASD prevalence in future surveillance reports. Although the DSM-IV-TR case definition will eventually be phased out, it will be applied in a limited geographic area to offer additional data for comparison. Future analyses will examine trends in the continued use of DSM-IV-TR diagnoses, such as autistic disorder, PDD-NOS, and Asperger disorder in health and education records, documentation of symptoms consistent with DSM-5 terminology, and how these trends might influence estimates of ASD prevalence over time. The latest findings from the ADDM Network provide evidence that the prevalence of ASD is higher than previously reported estimates and continues to vary among certain racial/ethnic groups and communities. With prevalence of ASD ranging from 13.1 to 29.3 per 1,000 children aged 8 years in different communities throughout the United States, the need for behavioral, educational, residential, and occupational services remains high, as does the need for increased research on both genetic and nongenetic risk factors for ASD. |
Motor abnormalities and epilepsy in infants and children with evidence of congenital Zika virus infection
Pessoa A , van der Linden V , Yeargin-Allsopp M , Carvalho Mdcg , Ribeiro EM , Van Naarden Braun K , Durkin MS , Pastula DM , Moore JT , Moore CA . Pediatrics 2018 141 S167-s179 Initial reports of congenital Zika virus (ZIKV) infection focused on microcephaly at birth with severe brain anomalies; the phenotype has broadened to include microcephaly that develops after birth and neurodevelopmental sequelae. In this narrative review, we summarize medical literature describing motor abnormalities and epilepsy in infants with evidence of congenital ZIKV infection and provide information on the impact of these conditions. Specific scenarios are used to illustrate the complex clinical course in infants with abnormalities that are consistent with congenital Zika syndrome. A search of the English-language medical literature was done to identify motor abnormalities and epilepsy in infants with evidence of congenital ZIKV infection by using Medline and PubMed, Embase, Scientific Electronic Library Online, Scopus, the OpenGrey Repository, and the Grey Literature Report in Public Health. Search terms included "Zika" only and "Zika" in combination with any of the following terms: "epilepsy," "seizure," "motor," and "cerebral palsy." Clinical features of motor abnormalities and epilepsy in these children were reviewed. Thirty-six publications were identified; 8 were selected for further review. Among infants with clinical findings that are consistent with congenital Zika syndrome, 54% had epilepsy and 100% had motor abnormalities. In these infants, impairments that are consistent with diagnoses of cerebral palsy and epilepsy occur frequently. Pyramidal and extrapyramidal motor abnormalities were notable for their early development and co-occurrence. Prompt identification of potential disabilities enables early intervention to improve the quality of life for affected children. Long-term studies of developmental outcomes and interventions in children with congenital ZIKV infection are needed. |
Trends in special education eligibility among children with autism spectrum disorder, 2002-2010
Rubenstein E , Daniels J , Schieve LA , Christensen DL , Van Naarden Braun K , Rice CE , Bakian AV , Durkin MS , Rosenberg SA , Kirby RS , Lee LC . Public Health Rep 2017 133 (1) 33354917739582 OBJECTIVE: Although data on publicly available special education are informative and offer a glimpse of trends in autism spectrum disorder (ASD) and use of educational services, using these data for population-based public health monitoring has drawbacks. Our objective was to evaluate trends in special education eligibility among 8-year-old children with ASD identified in the Autism and Developmental Disabilities Monitoring Network. METHODS: We used data from 5 Autism and Developmental Disabilities Monitoring Network sites (Arizona, Colorado, Georgia, Maryland, and North Carolina) during 4 surveillance years (2002, 2006, 2008, and 2010) and compared trends in 12 categories of special education eligibility by sex and race/ethnicity. We used multivariable linear risk regressions to evaluate how the proportion of children with a given eligibility changed over time. RESULTS: Of 6010 children with ASD, more than 36% did not receive an autism eligibility in special education in each surveillance year. From surveillance year 2002 to surveillance year 2010, autism eligibility increased by 3.6 percentage points ( P = .09), and intellectual disability eligibility decreased by 4.6 percentage points ( P < .001). A greater proportion of boys than girls had an autism eligibility in 2002 (56.3% vs 48.8%). Compared with other racial/ethnic groups, Hispanic children had the largest increase in proportion with autism eligibility from 2002 to 2010 (15.4%, P = .005) and the largest decrease in proportion with intellectual disability (-14.3%, P = .004). CONCLUSION: Although most children with ASD had autism eligibility, many received special education services under other categories, and racial/ethnic disparities persisted. To monitor trends in ASD prevalence, public health officials need access to comprehensive data collected systematically, not just special education eligibility. |
Autism spectrum disorder among US children (2002-2010): Socioeconomic, racial, and ethnic disparities
Durkin MS , Maenner MJ , Baio J , Christensen D , Daniels J , Fitzgerald R , Imm P , Lee LC , Schieve LA , Van Naarden Braun K , Wingate MS , Yeargin-Allsopp M . Am J Public Health 2017 107 (11) e1-e9 OBJECTIVES: To describe the association between indicators of socioeconomic status (SES) and the prevalence of autism spectrum disorder (ASD) in the United States during the period 2002 to 2010, when overall ASD prevalence among children more than doubled, and to determine whether SES disparities account for ongoing racial and ethnic disparities in ASD prevalence. METHODS: We computed ASD prevalence and 95% confidence intervals (CIs) from population-based surveillance, census, and survey data. We defined SES categories by using area-level education, income, and poverty indicators. We ascertained ASD in 13 396 of 1 308 641 8-year-old children under surveillance. RESULTS: The prevalence of ASD increased with increasing SES during each surveillance year among White, Black, and Hispanic children. The prevalence difference between high- and low-SES groups was relatively constant over time (3.9/1000 [95% CI = 3.3, 4.5] in 2002 and 4.1/1000 [95% CI = 3.6, 4.6] in the period 2006-2010). Significant racial/ethnic differences in ASD prevalence remained after stratification by SES. CONCLUSIONS: A positive SES gradient in ASD prevalence according to US surveillance data prevailed between 2002 and 2010, and racial and ethnic disparities in prevalence persisted during this time among low-SES children. (Am J Public Health. Published online ahead of print September 21, 2017: e1-e9. doi:10.2105/AJPH.2017.304032). |
Evaluation of critical congenital heart defects screening using pulse oximetry in the neonatal intensive care unit
Van Naarden Braun K , Grazel R , Koppel R , Lakshminrusimha S , Lohr J , Kumar P , Govindaswami B , Giuliano M , Cohen M , Spillane N , Jegatheesan P , McClure D , Hassinger D , Fofah O , Chandra S , Allen D , Axelrod R , Blau J , Hudome S , Assing E , Garg LF . J Perinatol 2017 37 (10) 1117-1123 OBJECTIVE: To evaluate the implementation of early screening for critical congenital heart defects (CCHDs) in the neonatal intensive care unit (NICU) and potential exclusion of sub-populations from universal screening. STUDY DESIGN: Prospective evaluation of CCHD screening at multiple time intervals was conducted in 21 NICUs across five states (n=4556 infants). RESULTS: Of the 4120 infants with complete screens, 92% did not have prenatal CHD diagnosis or echocardiography before screening, 72% were not receiving oxygen at 24 to 48 h and 56% were born 2500 g. Thirty-seven infants failed screening (0.9%); none with an unsuspected CCHD. False positive rates were low for infants not receiving oxygen (0.5%) and those screened after weaning (0.6%), yet higher among infants born at <28 weeks (3.8%). Unnecessary echocardiograms were minimal (0.2%). CONCLUSION: Given the majority of NICU infants were 2500 g, not on oxygen and not preidentified for CCHD, systematic screening at 24 to 48 h may be of benefit for early detection of CCHD with minimal burden.Journal of Perinatology advance online publication, 27 July 2017; doi:10.1038/jp.2017.105. |
Understanding cerebral palsy: The power of population-based surveillance
Van Naarden Braun K . Dev Med Child Neurol 2017 Recognition that cerebral palsy (CP) includes disturbances of perception, cognition, communication, and behavior has resulted in studies examining autism spectrum disorders (ASDs) among children with CP. These studies have described a higher frequency than the general population1,2 which may provide insight into shared etiological pathways, particularly given similar perinatal risk factors. The broad range of clinical characteristics of children with CP and ASD emphasizes their diverse resource needs. Early identification of co-occurring ASD can help direct supports to optimize functioning and social participation. | Data on the co-occurrence of CP and ASD are most useful when they are systematic and population-based. However, there are challenges for obtaining these data. At the population level, CP registers have differed in their methodology for ascertaining ASD. At the level of the individual child, there are challenges in diagnosing ASD among children with CP, particularly among those with more severe functional limitations. |
Development of a Machine Learning Algorithm for the Surveillance of Autism Spectrum Disorder.
Maenner MJ , Yeargin-Allsopp M , Van Naarden Braun K , Christensen DL , Schieve LA . PLoS One 2016 11 (12) e0168224 ![]() ![]() The Autism and Developmental Disabilities Monitoring (ADDM) Network conducts population-based surveillance of autism spectrum disorder (ASD) among 8-year old children in multiple US sites. To classify ASD, trained clinicians review developmental evaluations collected from multiple health and education sources to determine whether the child meets the ASD surveillance case criteria. The number of evaluations collected has dramatically increased since the year 2000, challenging the resources and timeliness of the surveillance system. We developed and evaluated a machine learning approach to classify case status in ADDM using words and phrases contained in children's developmental evaluations. We trained a random forest classifier using data from the 2008 Georgia ADDM site which included 1,162 children with 5,396 evaluations (601 children met ADDM ASD criteria using standard ADDM methods). The classifier used the words and phrases from the evaluations to predict ASD case status. We evaluated its performance on the 2010 Georgia ADDM surveillance data (1,450 children with 9,811 evaluations; 754 children met ADDM ASD criteria). We also estimated ASD prevalence using predictions from the classification algorithm. Overall, the machine learning approach predicted ASD case statuses that were 86.5% concordant with the clinician-determined case statuses (84.0% sensitivity, 89.4% predictive value positive). The area under the resulting receiver-operating characteristic curve was 0.932. Algorithm-derived ASD "prevalence" was 1.46% compared to the published (clinician-determined) estimate of 1.55%. Using only the text contained in developmental evaluations, a machine learning algorithm was able to discriminate between children that do and do not meet ASD surveillance criteria at one surveillance site. |
Prevalence of cerebral palsy among 8-year-old children in 2010 and preliminary evidence of trends in its relationship to low birthweight
Durkin MS , Benedict RE , Christensen D , Dubois LA , Fitzgerald RT , Kirby RS , Maenner MJ , Van Naarden Braun K , Wingate MS , Yeargin-Allsopp M . Paediatr Perinat Epidemiol 2016 30 (5) 496-510 BACKGROUND: The public health objective for cerebral palsy (CP) in the United States is to reduce the percentage of children with CP who were born low birthweight (LBW, <2500 g) by 10% between 2006 and 2020. This study reports the prevalence of CP in a constant surveillance area for the years 2006, 2008, and 2010 and describes initial progress towards the CP public health objective. METHODS: Data on children with CP at age 8 years were ascertained by the Autism and Developmental Disabilities Monitoring (ADDM) Network, a population-based surveillance system that monitored CP in four areas of the United States. RESULTS: CP prevalence in 2010 was 2.9 per 1000 [95% confidence interval (CI) 2.6, 3.2], down from 3.5 (95% CI 3.2, 3.9) in the same surveillance area in 2006. Among CP cases with no documented postneonatal aetiology, 49.1% (95% CI 42.9, 55.2) were born LBW in 2010 compared with 54.3% (95% CI 48.4, 60.1) in 2006. In 2010, 28.1% (95% CI 22.9, 30.4) were born very low birthweight (VLBW, <1500 g) compared with 35.4% (95% CI 30.0, 41.2) in 2006. The relative risks for associations between CP and both LBW and VLBW also declined, though not significantly, during the study period. CONCLUSIONS: Declines in the associations between CP and LBW categories may have contributed to declines during the study period in both the prevalence of CP and the percentage of children with CP who were born LBW or VLBW. Ongoing monitoring of these trends is warranted. |
Birth prevalence of cerebral palsy: A population-based study
Van Naarden Braun K , Doernberg N , Schieve L , Christensen D , Goodman A , Yeargin-Allsopp M . Pediatrics 2015 137 (1) 1-9 OBJECTIVE: Population-based data in the United States on trends in cerebral palsy (CP) birth prevalence are limited. The objective of this study was to examine trends in the birth prevalence of congenital spastic CP by birth weight, gestational age, and race/ethnicity in a heterogeneous US metropolitan area. METHODS: Children with CP were identified by a population-based surveillance system for developmental disabilities (DDs). Children with CP were included if they were born in metropolitan Atlanta, Georgia, from 1985 to 2002, resided there at age 8 years, and did not have a postneonatal etiology (n = 766). Birth weight, gestational age, and race/ethnicity subanalyses were restricted to children with spastic CP (n = 640). Trends were examined by CP subtype, gender, race/ethnicity, co-occurring DDs, birth weight, and gestational age. RESULTS: Birth prevalence of spastic CP per 1000 1-year survivors was stable from 1985 to 2002 (1.9 in 1985 to 1.8 in 2002; 0.3% annual average prevalence; 95% confidence interval [CI] -1.1 to 1.8). Whereas no significant trends were observed by gender, subtype, birth weight, or gestational age overall, CP prevalence with co-occurring moderate to severe intellectual disability significantly decreased (-2.6% [95% CI -4.3 to -0.8]). Racial disparities persisted over time between non-Hispanic black and non-Hispanic white children (prevalence ratio 1.8 [95% CI 1.5 to 2.1]). Different patterns emerged for non-Hispanic white and non-Hispanic black children by birth weight and gestational age. CONCLUSIONS: Given improvements in neonatal survival, evidence of stability of CP prevalence is encouraging. Yet lack of overall decreases supports continued monitoring of trends and increased research and prevention efforts. Racial/ethnic disparities, in particular, warrant further study. |
The role of socio-economic status and perinatal factors in racial disparities in the risk of cerebral palsy
Durkin MS , Maenner MJ , Benedict RE , Van Naarden Braun K , Christensen D , Kirby RS , Wingate M , Yeargin-Allsopp M . Dev Med Child Neurol 2015 57 (9) 835-43 AIM: To determine whether racial disparities in cerebral palsy (CP) risk among US children persist after controlling for socio-economic status (SES) (here indicated by maternal education) and perinatal risk factors. METHOD: A population-based birth cohort study was conducted using the Autism and Developmental Disabilities Monitoring Network surveillance and birth data for 8-year-old children residing in multi-county areas in Alabama, Georgia, Missouri, and Wisconsin between 2002 and 2008. The birth cohort comparison group included 458 027 children and the case group included 1570 children with CP, 1202 with available birth records. chi(2) tests were performed to evaluate associations and logistic regression was used to calculate relative risks (RR) and adjusted odds ratios (OR) with 95% confidence intervals (CI). RESULTS: The risk of spastic CP was more than 50% higher for black versus white children (RR 1.52, 95% CI 1.33-1.73), and this greater risk persisted after adjustment for SES (OR 1.35, 95% CI 1.18-1.55), but not after further adjustment for preterm birth and size for gestational age. The protective effect of maternal education remained after adjustment for race/ethnicity and perinatal factors. INTERPRETATION: Maternal education appears to independently affect CP risk but does not fully explain existing racial disparities in CP prevalence in the US. |
Congenital heart defects and receipt of special education services
Riehle-Colarusso T , Autry A , Razzaghi H , Boyle CA , Mahle WT , Van Naarden Braun K , Correa A . Pediatrics 2015 136 (3) 496-504 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. |
Trends in the prevalence of autism spectrum disorder, cerebral palsy, hearing loss, intellectual disability, and vision impairment, metropolitan Atlanta, 1991-2010
Van Naarden Braun K , Christensen D , Doernberg N , Schieve L , Rice C , Wiggins L , Schendel D , Yeargin-Allsopp M . PLoS One 2015 10 (4) e0124120 This study examined the prevalence and characteristics of autism spectrum disorder (ASD), cerebral palsy (CP), hearing loss (HL), intellectual disability (ID), and vision impairment (VI) over a 15-20 year time period, with specific focus on concurrent changes in ASD and ID prevalence. We used data from a population-based developmental disabilities surveillance program for 8-year-olds in metropolitan Atlanta. From 1991-2010, prevalence estimates of ID and HL were stable with slight increases in VI prevalence. CP prevalence was constant from 1993-2010. The average annual increase in ASD prevalence was 9.3% per year from 1996-2010, with a 269% increase from 4.2 per 1,000 in 1996 to 15.5 per 1,000 in 2010. From 2000-2010, the prevalence of ID without ASD was stable; during the same time, the prevalence of ASD with and without co-occurring ID increased by an average of 6.6% and 9.6% per year, respectively. ASD prevalence increases were found among both males and females, and among nearly all racial/ethnic subgroups and levels of intellectual ability. Average annual prevalence estimates from 1991-2010 underscore the significant community resources needed to provide early intervention and ongoing supports for children with ID (13.0 per 1,000), CP, (3.5 per 1,000), HL (1.4 per 1,000) and VI (1.3 in 1,000), with a growing urgency for children with ASD. |
Prevalence of autism spectrum disorder among children aged 8 years - autism and developmental disabilities monitoring network, 11 sites, United States, 2010
Autism and Developmental Disabilities Monitoring Network Surveillance Year 2010 Principal Investigators , Centers for Disease Control and Prevention , Baio J , Christensen D , Van Naarden Braun K , Clayton H , Goodman A , Doernberg N , Yeargin-Allsopp M , Washington A , Frenkel G , Wright V . MMWR Surveill Summ 2014 63 (2) 1-21 PROBLEM/CONDITION: Autism spectrum disorder (ASD). PERIOD COVERED: 2010. DESCRIPTION OF SYSTEM: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system in the United States that provides estimates of the prevalence of ASD and other characteristics among children aged 8 years whose parents or guardians live in 11 ADDM sites in the United States. ADDM surveillance is conducted in two phases. The first phase consists of screening and abstracting comprehensive evaluations performed by professional providers in the community. Multiple data sources for these evaluations include general pediatric health clinics and specialized programs for children with developmental disabilities. In addition, most ADDM Network sites also review and abstract records of children receiving special education services in public schools. The second phase involves review of all abstracted evaluations by trained clinicians to determine ASD surveillance case status. A child meets the surveillance case definition for ASD if a comprehensive evaluation of that child completed by a qualified professional describes behaviors consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) diagnostic criteria for any of the following conditions: autistic disorder, pervasive developmental disorder-not otherwise specified (including atypical autism), or Asperger disorder. This report provides updated prevalence estimates for ASD from the 2010 surveillance year. In addition to prevalence estimates, characteristics of the population of children with ASD are described. RESULTS: For 2010, the overall prevalence of ASD among the ADDM sites was 14.7 per 1,000 (one in 68) children aged 8 years. Overall ASD prevalence estimates varied among sites from 5.7 to 21.9 per 1,000 children aged 8 years. ASD prevalence estimates also varied by sex and racial/ethnic group. Approximately one in 42 boys and one in 189 girls living in the ADDM Network communities were identified as having ASD. Non-Hispanic white children were approximately 30% more likely to be identified with ASD than non-Hispanic black children and were almost 50% more likely to be identified with ASD than Hispanic children. Among the seven sites with sufficient data on intellectual ability, 31% of children with ASD were classified as having IQ scores in the range of intellectual disability (IQ ≤70), 23% in the borderline range (IQ = 71-85), and 46% in the average or above average range of intellectual ability (IQ >85). The proportion of children classified in the range of intellectual disability differed by race/ethnicity. Approximately 48% of non-Hispanic black children with ASD were classified in the range of intellectual disability compared with 38% of Hispanic children and 25% of non-Hispanic white children. The median age of earliest known ASD diagnosis was 53 months and did not differ significantly by sex or race/ethnicity. INTERPRETATION: These findings from CDC's ADDM Network, which are based on 2010 data reported from 11 sites, provide updated population-based estimates of the prevalence of ASD in multiple communities in the United States. Because the ADDM Network sites do not provide a representative sample of the entire United States, the combined prevalence estimates presented in this report cannot be generalized to all children aged 8 years in the United States population. Consistent with previous reports from the ADDM Network, findings from the 2010 surveillance year were marked by significant variations in ASD prevalence by geographic area, sex, race/ethnicity, and level of intellectual ability. The extent to which this variation might be attributable to diagnostic practices, underrecognition of ASD symptoms in some racial/ethnic groups, socioeconomic disparities in access to services, and regional differences in clinical or school-based practices that might influence the findings in this report is unclear. PUBLIC HEALTH ACTION: ADDM Network investigators will continue to monitor the prevalence of ASD in select communities, with a focus on exploring changes within these communities that might affect both the observed prevalence of ASD and population-based characteristics of children identified with ASD. Although ASD is sometimes diagnosed by 2 years of age, the median age of the first ASD diagnosis remains older than age 4 years in the ADDM Network communities. Recommendations from the ADDM Network include enhancing strategies to address the need for 1) standardized, widely adopted measures to document ASD severity and functional limitations associated with ASD diagnosis; 2) improved recognition and documentation of symptoms of ASD, particularly among both boys and girls, children without intellectual disability, and children in all racial/ethnic groups; and 3) decreasing the age when children receive their first evaluation for and a diagnosis of ASD and are enrolled in community-based support systems. |
Potential impact of DSM-5 criteria on autism spectrum disorder prevalence estimates
Maenner MJ , Rice CE , Arneson CL , Cunniff C , Schieve LA , Carpenter LA , Van Naarden Braun K , Kirby RS , Bakian AV , Durkin MS . JAMA Psychiatry 2014 71 (3) 292-300 IMPORTANCE: The DSM-5 contains revised diagnostic criteria for autism spectrum disorder (ASD) from the DSM-IV-TR. Potential impacts of the new criteria on ASD prevalence are unclear. OBJECTIVE: To assess potential effects of the DSM-5 ASD criteria on ASD prevalence estimation by retrospectively applying the new criteria to population-based surveillance data collected for previous ASD prevalence estimation. DESIGN, SETTING, AND PARTICIPANTS: Cross-sectional, population-based ASD surveillance based on clinician review of coded behaviors documented in children's medical and educational evaluations from 14 geographically defined areas in the United States participating in the Autism and Developmental Disabilities Monitoring (ADDM) Network in 2006 and 2008. This study included 8-year-old children living in ADDM Network study areas in 2006 or 2008, including 644 883 children under surveillance, of whom 6577 met surveillance ASD case status based on the DSM-IV-TR. MAIN OUTCOMES AND MEASURES: Proportion of children meeting ADDM Network ASD criteria based on the DSM-IV-TR who also met DSM-5 criteria; overall prevalence of ASD using DSM-5 criteria. RESULTS: Among the 6577 children classified by the ADDM Network as having ASD based on the DSM-IV-TR, 5339 (81.2%) met DSM-5 ASD criteria. This percentage was similar for boys and girls but higher for those with than without intellectual disability (86.6% and 72.5%, respectively; P < .001). A total of 304 children met DSM-5 ASD criteria but not current ADDM Network ASD case status. Based on these findings, ASD prevalence per 1000 for 2008 would have been 10.0 (95% CI, 9.6-10.3) using DSM-5 criteria compared with the reported prevalence based on DSM-IV-TR criteria of 11.3 (95% CI, 11.0-11.7). CONCLUSIONS AND RELEVANCE: Autism spectrum disorder prevalence estimates will likely be lower under DSM-5 than under DSM-IV-TR diagnostic criteria, although this effect could be tempered by future adaptation of diagnostic practices and documentation of behaviors to fit the new criteria. |
Prevalence of cerebral palsy, co-occurring autism spectrum disorders, and motor functioning - Autism and Developmental Disabilities Monitoring Network, USA, 2008
Christensen D , Van Naarden Braun K , Doernberg NS , Maenner MJ , Arneson CL , Durkin MS , Benedict RE , Kirby RS , Wingate MS , Fitzgerald R , Yeargin-Allsopp M . Dev Med Child Neurol 2014 56 (1) 59-65 AIM: The aim of this study was to report the prevalence and characteristics of children with cerebral palsy (CP). METHOD: Children with CP (n=451) were ascertained by the Autism and Developmental Disabilities Monitoring (ADDM) Network, a population-based, record-review surveillance system monitoring CP in four areas of the USA. Prevalence was calculated as the number of children with CP among all 8-year-old children residing in these areas in 2008. Motor function was categorized by Gross Motor Function Classification System level and walking ability. Co-occurring autism spectrum disorders (ASD) and epilepsy were ascertained using ADDM Network surveillance methodology. RESULTS: The period prevalence of CP for 2008 was 3.1 per 1000 8-year-old children (95% confidence interval 2.8-3.4). Approximately 58% of children walked independently. Co-occurring ASD frequency was 6.9% and was higher (18.4%) among children with non-spastic CP, particularly hypotonic CP. Co-occurring epilepsy frequency was 41% overall, did not differ by ASD status or CP subtype, and was highest (67%) among children with limited or no walking ability. INTERPRETATION: The prevalence of CP in childhood from US surveillance data has remained relatively constant, in the range of 3.1 to 3.6 per 1000, since 1996. The higher frequency of ASD in non-spastic than in spastic subtypes of CP calls for closer examination. |
A public health economic assessment of hospitals' cost to screen newborns for critical congenital heart disease
Peterson C , Grosse SD , Glidewell J , Garg LF , Van Naarden Braun K , Knapp MM , Beres LM , Hinton CF , Olney RS , Cassell CH . Public Health Rep 2014 129 (1) 86-93 OBJECTIVE: Critical congenital heart disease (CCHD) was recently added to the U.S. Recommended Uniform Screening Panel for newborns. This evaluation aimed to estimate screening time and hospital cost per newborn screened for CCHD using pulse oximetry as part of a public health economic assessment of CCHD screening. METHODS: A cost survey and time and motion study were conducted in well-newborn and special/intensive care nurseries in a random sample of seven birthing hospitals in New Jersey, where the state legislature mandated CCHD screening in 2011. The sample was stratified by hospital facility level, hospital birth census, and geographic location. At the time of the evaluation, all hospitals had conducted CCHD screening for at least four months. RESULTS: Mean screening time per newborn was 9.1 (standard deviation = 3.4) minutes. Hospitals' total mean estimated cost per newborn screened was $14.19 (in 2011 U.S. dollars), consisting of $7.36 in labor costs and $6.83 in equipment and supply costs. CONCLUSIONS: This federal agency-state health department collaborative assessment is the first state-level analysis of time and hospital costs for CCHD screening using pulse oximetry conducted in the U.S. Hospitals' cost per newborn screened for CCHD with pulse oximetry is comparable with cost estimates of existing newborn screening tests. Hospitals' equipment costs varied substantially based on the pulse oximetry technology employed, with lower costs among hospitals that used reusable screening sensors. In combination with estimates of screening accuracy, effectiveness, and avoided costs, information from this evaluation suggests that CCHD screening is cost-effective. |
Childhood vision impairment, hearing loss and co-occurring autism spectrum disorder
Kancherla V , Van Naarden Braun K , Yeargin-Allsopp M . Disabil Health J 2013 6 (4) 333-42 BACKGROUND: Limited population-based data on prevalence of childhood vision impairment (VI) and hearing loss (HL), and their co-occurrence with autism spectrum disorder (ASD) exists. OBJECTIVE: To examine prevalence and characteristics of VI, HL and co-occurring ASD among 8-year-olds in metropolitan Atlanta 2000-2008. METHODS: We used data from the population-based Metropolitan Atlanta Developmental Disabilities Surveillance Program. Prevalence, birth and parental characteristics, presence and severity of other co-occurring developmental disabilities, and age of earliest identification of ASD, were examined for children with VI and HL, by co-occurring ASD. RESULTS: VI and HL prevalences were 1.2 and 1.3 per 1000 8-year-olds, respectively. Approximately 6-7% of children with VI or HL had co-occurring ASD. Children with VI or HL with co-occurring ASD differed from those without co-occurring ASD by select birth characteristics and the presence of other co-occurring DDs. The median age of earliest known ASD diagnosis was significantly later among children with VI and ASD compared to children with ASD without VI (79 vs. 56 months). Children with HL and ASD were first evaluated by a community provider significantly earlier than those with ASD without HL (40 vs. 50 months). CONCLUSIONS: The frequency of co-occurring ASD with VI and HL is higher than the population prevalence of ASD. The significant delays in diagnosis of ASD in children with VI and lack of earlier diagnosis of ASD among children with HL despite earlier evaluation highlight the importance of developing screening tools for early identification of ASD among children with VI and HL. |
Maternal infections during pregnancy and cerebral palsy: a population-based cohort study
Miller JE , Pedersen LH , Streja E , Bech BH , Yeargin-Allsopp M , Van Naarden Braun K , Schendel DE , Christensen D , Uldall P , Olsen J . Paediatr Perinat Epidemiol 2013 27 (6) 542-52 BACKGROUND: Cerebral palsy (CP) is a common motor disability in childhood. We examined the association between maternal infections during pregnancy and the risk of congenital CP in the child. METHODS: Liveborn singletons in Denmark between 1997 and 2003 were identified from the Danish National Birth Registry and followed from 1 year of life until 2008. Redemption of antibiotics from the National Register of Medicinal Product Statistics and maternal infections reported by the National Hospital Register were used as markers of maternal infection during pregnancy. CP diagnoses were obtained from the Danish Cerebral Palsy Registry. Adjusted hazard ratio (HR) and 95% confidence interval (CI) were estimated by Cox proportional hazard models. RESULTS: Of the 440 564 singletons with follow-up data, 840 were diagnosed with congenital CP. Maternal genito-urinary tract infections (HR 2.1, 95% CI 1.4, 3.2) were associated with CP in all births, in term births (HR 1.9, 95% CI 1.1, 3.2), in children with spastic CP (HR 2.1, 95% CI 1.4, 3.3), and among first-born children (HR 1.9, 95% CI 1.4, 3.3). Overall, we found associations between redeemed nitrofurantoin (HR 1.7, 95% CI 1.1, 2.8) and CP. Among trimester-specific exposures, CP risk was associated with prescriptions redeemed in the first trimester for any antibacterials, beta-lactam antibacterials, and nitrofurantoin, an antibiotic commonly used to treat lower urinary tract infection, and genito-urinary tract infections in the third trimester. CONCLUSION: Genito-urinary tract infections and antibiotic use during pregnancy were associated with increased risks of CP, indicating that some maternal infections or causes of maternal infections present in prenatal life may be part of a causal pathway leading to CP. |
Predictors of ascertainment of autism spectrum disorders across nine US communities
Pettygrove S , Pinborough-Zimmerman J , John Meaney F , Van Naarden Braun K , Nicholas J , Miller L , Miller J , Rice C . J Autism Dev Disord 2013 43 (8) 1867-79 Autism spectrum disorders (ASD) prevalence estimates derived from a single data source under-identify children and provide a biased profile of case characteristics. We analyzed characteristics of 1,919 children with ASD identified by the Autism and Developmental Disabilities Monitoring Network. Cases ascertained only at education sources were compared to those identified at health sources. 38 % were education-only. These were older at their earliest evaluation (54.5 vs. 42.0 months, p < 0.001) and earliest ASD diagnosis (62 vs. 53 months, p < 0.001). More lived in census blocks with lower adult education (p < 0.001). Lower educational attainment of adults in census blocks of residence of education-only cases suggests disparities in access to clinical services with the schools providing crucial services to many families. |
Dental care among young adults with intellectual disability
Kancherla V , Van Naarden-Braun K , Yeargin-Allsopp M . Res Dev Disabil 2013 34 (5) 1630-1641 Dental care among young adults with intellectual disability (ID) is poorly documented and largely unmet. By using population-based data from the Metropolitan Atlanta Developmental Disabilities Follow-Up Study, we assessed factors associated with at least one or two dental visits per year among young adults with and without ID. Significantly fewer young adults with ID (45%) visited a dentist at least once per year, compared with those without ID (58%). ID severity and the presence of co-occurring developmental disabilities predicted dental care use. Sociodemographics, daily functioning, societal participation, dental services, and dental health factors were examined as predictors of dental care frequency. Our findings can help focus efforts toward improving the frequency of dental care visits among young adults with ID. |
The role of migration and choice of denominator on the prevalence of cerebral palsy
Van Naarden Braun K , Maenner MJ , Christensen D , Doernberg NS , Durkin MS , Kirby RS , Yeargin-Allsopp M . Dev Med Child Neurol 2013 55 (6) 520-6 AIM: Differential migration and choice of denominator have been hypothesized to contribute to differences between period prevalence and birth prevalence of cerebral palsy (CP). The purpose of this study was to evaluate the effects of migration and choice of denominator on the prevalence of CP. METHOD: Data from the Metropolitan Atlanta Developmental Disabilities Surveillance Program and census and birth certificate files were used to calculate various CP prevalence estimates for 2000. RESULTS: The overall CP period prevalence was 3.2 (95% confidence interval [CI] 2.7-3.8) per 1000 8-year-olds and was similar for those born in Atlanta who resided there at age 8 years (3.3; 95% CI 2.7-4.1) and those born outside Atlanta who moved into Atlanta by age 8 years (3.0; 95% CI 2.3-3.9). CP prevalence in these two migration strata was similar by sex and race/ethnicity. CP birth prevalence of 8-year-olds in Atlanta in 2000 was 2.0 (95% CI 1.6-2.5) per 1000 live births in 1992. INTERPRETATION: The authors found no evidence to support the hypothesis that differential in-migration explained higher period than birth prevalence of CP in Atlanta. Comparability of CP prevalence across geographic areas will be enhanced if future studies report both period and birth prevalence. |
Prevalence of autism spectrum disorders--Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008
Autism and Developmental Disabilities Monitoring Network Surveillance Year 2008 Principal Investigators , Centers for Disease Control and Prevention , Baio J , Rice Catherine , Van Naarden Braun K , Phillips K , Doernberg N , Yeargin-Allsopp M , Graham Schwartz S , Wojcik J , Wright V , Lance R . MMWR Surveill Summ 2012 61 (3) 1-19 PROBLEM/CONDITION: Autism spectrum disorders (ASDs) are a group of developmental disabilities characterized by impairments in social interaction and communication and by restricted, repetitive, and stereotyped patterns of behavior. Symptoms typically are apparent before age 3 years. The complex nature of these disorders, coupled with a lack of biologic markers for diagnosis and changes in clinical definitions over time, creates challenges in monitoring the prevalence of ASDs. Accurate reporting of data is essential to understand the prevalence of ASDs in the population and can help direct research. PERIOD COVERED: 2008. DESCRIPTION OF SYSTEM: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system that estimates the prevalence of ASDs and describes other characteristics among children aged 8 years whose parents or guardians reside within 14 ADDM sites in the United States. ADDM does not rely on professional or family reporting of an existing ASD diagnosis or classification to ascertain case status. Instead, information is obtained from children's evaluation records to determine the presence of ASD symptoms at any time from birth through the end of the year when the child reaches age 8 years. ADDM focuses on children aged 8 years because a baseline study conducted by CDC demonstrated that this is the age of identified peak prevalence. A child is included as meeting the surveillance case definition for an ASD if he or she displays behaviors (as described on a comprehensive evaluation completed by a qualified professional) consistent with the American Psychiatric Association's Diagnostic and Statistical Manual-IV, Text Revision (DSM-IV-TR) diagnostic criteria for any of the following conditions: Autistic Disorder; Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS, including Atypical Autism); or Asperger Disorder. The first phase of the ADDM methodology involves screening and abstraction of comprehensive evaluations completed by professional providers at multiple data sources in the community. Multiple data sources are included, ranging from general pediatric health clinics to specialized programs for children with developmental disabilities. In addition, many ADDM sites also review and abstract records of children receiving special education services in public schools. In the second phase of the study, all abstracted evaluations are reviewed by trained clinicians to determine ASD case status. Because the case definition and surveillance methods have remained consistent across all ADDM surveillance years to date, comparisons to results for earlier surveillance years can be made. This report provides updated ASD prevalence estimates from the 2008 surveillance year, representing 14 ADDM areas in the United States. In addition to prevalence estimates, characteristics of the population of children with ASDs are described, as well as detailed comparisons of the 2008 surveillance year findings with those for the 2002 and 2006 surveillance years. RESULTS: For 2008, the overall estimated prevalence of ASDs among the 14 ADDM sites was 11.3 per 1,000 (one in 88) children aged 8 years who were living in these communities during 2008. Overall ASD prevalence estimates varied widely across all sites (range: 4.8-21.2 per 1,000 children aged 8 years). ASD prevalence estimates also varied widely by sex and by racial/ethnic group. Approximately one in 54 boys and one in 252 girls living in the ADDM Network communities were identified as having ASDs. Comparison of 2008 findings with those for earlier surveillance years indicated an increase in estimated ASD prevalence of 23% when the 2008 data were compared with the data for 2006 (from 9.0 per 1,000 children aged 8 years in 2006 to 11.0 in 2008 for the 11 sites that provided data for both surveillance years) and an estimated increase of 78% when the 2008 data were compared with the data for 2002 (from 6.4 per 1,000 children aged 8 years in 2002 to 11.4 in 2008 for the 13 sites that provided data for both surveillance years). Because the ADDM Network sites do not make up a nationally representative sample, these combined prevalence estimates should not be generalized to the United States as a whole. INTERPRETATION: These data confirm that the estimated prevalence of ASDs identified in the ADDM network surveillance populations continues to increase. The extent to which these increases reflect better case ascertainment as a result of increases in awareness and access to services or true increases in prevalence of ASD symptoms is not known. ASDs continue to be an important public health concern in the United States, underscoring the need for continued resources to identify potential risk factors and to provide essential supports for persons with ASDs and their families. PUBLIC HEALTH ACTION: Given substantial increases in ASD prevalence estimates over a relatively short period, overall and within various subgroups of the population, continued monitoring is needed to quantify and understand these patterns. With 5 biennial surveillance years completed in the past decade, the ADDM Network continues to monitor prevalence and characteristics of ASDs and other developmental disabilities for the 2010 surveillance year. Further work is needed to evaluate multiple factors contributing to increases in estimated ASD prevalence over time. ADDM Network investigators continue to explore these factors, with a focus on understanding disparities in the identification of ASDs among certain subgroups and on how these disparities have contributed to changes in the estimated prevalence of ASDs. CDC is partnering with other federal and private partners in a coordinated response to identify risk factors for ASDs and to meet the needs of persons with ASDs and their families. |
Medical expenditures attributable to cerebral palsy and intellectual disability among Medicaid-enrolled children
Kancherla V , Amendah DD , Grosse SD , Yeargin-Allsopp M , Van Naarden Braun K . Res Dev Disabil 2012 33 (3) 832-840 This study estimated medical expenditures attributable to cerebral palsy (CP) among children enrolled in Medicaid, stratified by the presence of co-occurring intellectual disability (ID), relative to children without CP or ID. The MarketScan((R)) Medicaid Multi-State database was used to identify children with CP for 2003-2005 by using the International Classification of Diseases, Ninth Revision; Clinical Modification (ICD-9-CM) code 343.xx. Children with ID were identified for 2005 by using ICD-9-CM code 317.xx-319.xx. Children without CP or ID during the same period served as control subjects. Medical expenditures were estimated for case and control children for 2005. The difference between the average expenditures for children with and without CP was used as a proxy for attributable expenditures for the condition. The attributable expenditures of co-occurring ID were calculated similarly as the difference in average expenditures among children with CP with and without ID. A total of 9927 children with CP were identified. Among them, 2022 (20.3%) children had co-occurring ID recorded in medical claims. Children with CP but without ID incurred medical expenditures that were $15,047 higher than those of control children without CP or ID. By contrast, children with CP and co-occurring ID incurred costs that were $41,664 higher, compared with control children, and $26,617 more than children with CP but without ID. Administrative data from a large, multistate database demonstrated high medical expenditures for publicly insured children with CP. Expenditures approximately tripled for children with CP and co-occurring ID. |
Children with cerebral palsy: racial disparities in functional limitations
Maenner MJ , Benedict RE , Arneson CL , Yeargin-Allsopp M , Wingate MS , Kirby RS , Van Naarden Braun K , Durkin MS . Epidemiology 2011 23 (1) 35-43 BACKGROUND: Previous studies of the frequency of cerebral palsy in the United States have found excess prevalence in black children relative to other groups. Whether the severity of cerebral palsy differs between black and white children has not previously been investigated. METHODS: A population-based surveillance system in 4 regions of the United States identified 476 children with cerebral palsy among 142,338 8-year-old children in 2006. Motor function was rated by the Gross Motor Function Classification System and grouped into 3 categories of severity. We used multiple imputation to account for missing information on motor function and calculated the race-specific prevalence of each cerebral palsy severity level. RESULTS: The prevalence of cerebral palsy was 3.7 per 1000 black children and 3.2 per 1000 white children (prevalence odds ratio [OR] = 1.2 [95% confidence interval = 1.0-1.4]). When stratified by severity of functional limitation, the racial disparity was present only for severe cerebral palsy (black vs. white prevalence OR = 1.7 [1.1-2.4]). The excess prevalence of severe cerebral palsy in black children was evident in term and very preterm birth strata. CONCLUSION: Black children in the United States appear to have a higher prevalence of cerebral palsy overall than white children, although the excess prevalence of cerebral palsy in black children is seen only among those with the most severe limitations. Further research is needed to explore reasons for this disparity in functional limitations; potential mechanisms include racial differences in risk factors, access to interventions, and under-identification of mild cerebral palsy in black children. |
Effect of incorporating adaptive functioning scores on the prevalence of intellectual disability
Obi O , Van Naarden Braun K , Baio J , Drews-Botsch C , Devine O , Yeargin-Allsopp M . Am J Intellect Dev Disabil 2011 116 (5) 360-70 Surveillance and epidemiologic research on intellectual disability often do not incorporate adaptive functioning (AF) data. Exclusion of AF data leads to overestimation of the prevalence of intellectual disability, the extent of which is not known. In this study, the authors evaluated the effect of incorporating AF data on overall intellectual disability prevalence according to sociodemographic, economic, and severity characteristics. Between 2002 and 2006, the Metropolitan Atlanta Developmental Disabilities Surveillance Program identified 1,595 8-year-old children who met the study's intellectual disability surveillance-case definition of IQ ≤ 70. AF scores were not available for 9.2% of the case children, specifically those with mild intellectual disability and low socioeconomic backgrounds. Prevalence estimates showed few substantive changes when incorporating AF data. The authors conclude that use of IQ data alone appears to be appropriate for measuring population intellectual disability prevalence. |
A population-based assessment of the health, functional status, and consequent family impact among children with Down syndrome
Schieve LA , Boulet SL , Kogan MD , Van Naarden-Braun K , Boyle CA . Disabil Health J 2011 4 (2) 68-77 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. |
Prevalence and functioning of children with cerebral palsy in four areas of the United States in 2006: a report from the Autism and Developmental Disabilities Monitoring Network
Kirby RS , Wingate MS , Van Naarden Braun K , Doernberg NS , Arneson CL , Benedict RE , Mulvihill B , Durkin MS , Fitzgerald RT , Maenner MJ , Patz JA , Yeargin-Allsopp M . Res Dev Disabil 2011 32 (2) 462-9 AIM: To estimate the prevalence of cerebral palsy (CP) and the frequency of co-occurring developmental disabilities (DDs), gross motor function (GMF), and walking ability using the largest surveillance DD database in the US. METHODS: We conducted population-based surveillance of 8-year-old children in 2006 (N=142,338), in areas of Alabama, Georgia, Wisconsin, and Missouri. This multi-site collaboration involved retrospective record review at multiple sources. We reported CP subtype, co-occurring DDs, Gross Motor Function Classification System (GMFCS) level, and walking ability as well as CP period prevalence by race/ethnicity and sex. RESULTS: CP prevalence was 3.3 (95% confidence interval [CI]: 3.1-3.7) per 1000 and varied by site, ranging from 2.9 (Wisconsin) to 3.8 (Georgia) per 1000, 8-year olds (p<0.02). Approximately 81% had spastic CP. Among children with CP, 8% had an autism spectrum disorder and 35% had epilepsy. Using the GMFCS, 38.1% functioned at the highest level (I), with 17.1% at the lowest level (V). Fifty-six percent were able to walk independently and 33% had limited or no walking ability. INTERPRETATION: Surveillance data are enhanced when factors such as functioning and co-occurring conditions known to affect clinical service needs, quality of life, and health care are also considered. |
Racial disparities in community identification of autism spectrum disorders over time; metropolitan Atlanta, Georgia, 2000-2006
Jarquin VG , Wiggins LD , Schieve LA , Van Naarden-Braun K . J Dev Behav Pediatr 2011 32 (3) 179-87 OBJECTIVE: Past research indicates that non-Hispanic black (NHB) children are less likely than non-Hispanic white (NHW) children to have an autism spectrum disorder (ASD) diagnosis, even if they seem to meet criteria for the disorder. This study examined differences in community identification of ASDs between NHB and NHW children identified by a population-based surveillance system. METHODS: Participants were identified as an ASD surveillance case by the Metropolitan Atlanta Developmental Disabilities Surveillance Program in surveillance years 2000, 2002, 2004, and 2006. Health and education records were abstracted and reviewed to determine ASD surveillance case status; community identification was defined by a documented ASD diagnosis, special education eligibility, and behaviors noted in records. Children were placed in 1 of 5 mutually exclusive categories on the basis of ASD specificity. RESULTS: Total ASD prevalence was higher for NHW than NHB children, but NHB children were more likely than NHW children to have autistic disorder and autism eligibility at a public school documented in records. NHB children were less likely than NHW children to have pervasive developmental disorder-not otherwise specified and Asperger's disorder documented in records, even after controlling for socioeconomic status. NHB children were more likely than NHW children to have co-occurring intellectual disability. CONCLUSION: NHB children were less likely than NHW children to have been identified with less severe ASDs, which might have prevented or delayed intervention services that would have catered to their needs. This study illustrates the need for continued professional education, particularly concerning milder ASDs in minority groups. |
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