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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 greater than 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. (Contains 3 tables.)

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 [less than or equal to] 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.

Developmental disabilities are a heterogeneous group of chronic conditions that may result in substantial activity limitations. The type and number of limitations may vary by impairment characteristics. Economic and social constraints may impact activity limitations beyond those attributable to their impairment. Using the International Classification of Functioning (ICF), Disability, and Health conceptual framework, this study tests the hypothesis that activity limitations in young adulthood are not inevitable consequences of childhood impairment. The Metropolitan Atlanta Developmental Disabilities Follow-up Study of Young Adults, a cohort of young adults ages 21-25, is used to examine the relationship between childhood impairment and activity limitations in young adulthood. For young adults with isolated impairment, activity limitations are not probable outcomes. This situation is not the case for those with severe intellectual disability and/or multiple impairments. The type and extent of activity limitations vary by impairment characteristics. With the goal of improving and preventing activity limitations in young adults with various types and severities of childhood impairment, additional research is needed to further identify areas for secondary and tertiary prevention of the consequences of childhood impairment. The conceptual framework of the ICF provides a useful tool for testing hypotheses to pinpoint areas of intervention. (Contains 4 tables.)

Objective: Measure select Healthy People 2010 Leading Health Indicators in young adults with and without a history of developmental disabilities (DD) using a population-based cohort. Methods: Young adults were interviewed to assess the prevalence of seven Leading Health Indicators: physical activity, overweight and obesity, tobacco use, substance abuse, responsible sexual behavior, injury and violence, and access to healthcare. Results: Young adults with a history of DD were less likely to be involved in tobacco use, substance abuse and sexual activity. Areas of concern included below normal Body Mass Index, lack of HIV/AIDS and sex education, preventive healthcare services for women, and victimization. Conclusions: Despite some healthy lifestyle indicators, health gaps may place young adults with a history of DD at risk for poor health and quality of life.

The magnitude and causes of death among a cohort of children with epilepsy were determined. A follow-up study with a population-based cohort of 10-year-old children in the metropolitan Atlanta area with epilepsy was conducted. The National Death Index and linkage to State of Georgia death certificates were used to identify deaths. The authors estimated the expected numbers of deaths by applying mortality rates adjusted by age, race, and sex for the entire state of Georgia to the population for the follow-up period. Among the 688 children who were in the final epilepsy cohort, 64 deaths occurred; 20.6 deaths were expected (mortality ratio adjusted for age, race, and sex = 3.11). The mortality ratios for children with Lennox-Gastaut syndrome and infantile spasms were 13.92 and 11.91, respectively. Children and adolescents with epilepsy, especially those with Lennox-Gastaut syndrome or infantile spasms, have an increased risk of death. [ABSTRACT FROM AUTHOR]

OBJECTIVE. The goal was to estimate the prevalence of cerebral palsy and cerebral palsy subtypes among children in 3 areas of the United States by using a population -based surveillance system. METHODS. Using methods developed by the Centers for Disease Control and Prevention Metropolitan Atlanta Developmental Disabilities Surveillance Program, investigators from the Autism and Developmental Disabilities Monitoring Network conducted surveillance of cerebral palsy among 8-year-old children living in northern Alabama, metropolitan Atlanta, and southeastern Wisconsin in 2002 (N = 114 897). Cross-sectional data were collected through retrospective record review from multiple sources. Cases were linked to birth certificate and census files to obtain additional information. Period prevalence estimates were calculated per 1000 children 8 years of age. RESULTS. The average prevalence of cerebral palsy across the 3 sites was 3.6 cases per 1000, with notably similar site-specific prevalence estimates (3.3 cases per 1000 in Wisconsin, 3.7 cases per 1000 in Alabama, and 3.8 cases per 1000 in Georgia). At all sites, prevalence was higher in boys than girls (overall boy/girl ratio: 1.4:1). Also, at all sites, the prevalence of cerebral palsy was highest in black non-Hispanic children and lowest in Hispanic children. At all sites, the prevalence among children living in low- and middle-income neighborhoods was higher than that among children living in high-income neighborhoods. Spastic cerebral palsy was the most common subtype (77% of all cases), with bilateral spastic cerebral palsy dominating the spastic group (70%). CONCLUSION. These findings contribute new knowledge to the epidemiology of cerebral palsy in the United States. The similarities in prevalence rates and patterns of cerebral palsy reported for 8-year-old children at 3 geographically distinct sites provide evidence of the reliability of the surveillance methods used by the Autism and Developmental Disabilities Monitoring Network. [ABSTRACT FROM AUTHOR]

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Problem: Autism spectrum disorders (ASDs) encompass a spectrum of conditions, including autistic disorder; pervasive developmental disorders, not otherwise specified (PDD-NOS); and Asperger disorder. Impairments associated with ASDs can range from mild to severe. In 2000, in response to increasing public heath concern regarding ASDs, CDC established the Autism and Developmental Disabilities Monitoring (ADDM) Network. The primary objective of this ongoing surveillance system is to track the prevalence and characteristics of ASDs in the United States. ADDM data are useful to understand the prevalence of ASDs and have implications for improved identification, health and education service planning, and intervention for children with ASDs. Because complete, valid, timely, and representative prevalence estimates are essential to inform public health responses to ASDs, evaluating the effectiveness and efficiency of the ADDM methodology is needed to determine how well these methods meet the network's objective. Reporting Period: 2002. Description of System: The ADDM Network is a multiple-source, population-based, active system for monitoring ASDs and other developmental disabilities. In 2002, data were collected from 14 collaborative sites. This report describes an evaluation conducted using guidelines established by CDC for evaluating public health surveillance systems and is based on examination of the following characteristics of the ADDM Network surveillance system: simplicity, flexibility, data quality, acceptability, representativeness, sensitivity, predictive value positive (PVP), timeliness, stability, data confidentiality and security, and sources of variability. Results and Interpretation: Using multiple sources for case ascertainment strengthens the system's representativeness, sensitivity, and flexibility, and the clinician review process aims to bolster PVP. Sensitivity and PVP are difficult to measure, but the ADDM methodology provides the best possible estimate currently available of prevalence of ASDs without conducting complete population screening and diagnostic clinical case confirmation. Although the system is dependent on the quality and availability of information in evaluation records, extensive quality control and data cleaning protocols and missing records assessments ensure the most accurate reflection of the records reviewed. Maintaining timeliness remains a challenge with this complex methodology, and continuous effort is needed to improve timeliness and simplicity without sacrificing data quality. The most difficult influences to assess are the effects of changes in diagnostic and treatment practices, service provision, and community awareness. Information sharing through education and outreach with site-specific stakeholders is the best mechanism for understanding the current climate in the community with respect to changes in service provision and public policy related to ASDs, which can affect prevalence estimates. Public Health Actions: These evaluation results and descriptions can be used to help interpret the ADDM Network 2002 surveillance year data and can serve as a model for other public health surveillance systems, especially those designed to monitor the prevalence of complex disorders. [ABSTRACT FROM AUTHOR]

Serious developmental disabilities (DD) are quite common and affect approximately 2% of all school-aged children. The impact of DDs with respect to the need for special education services, medical care and the demand on family members can be enormous. While this impact can be magnified for families with more than one child with a DD, little is known regarding the epidemiology of recurrence of DDs. When the cause of a DD is unknown, genetic counsellors rely on recurrence risk estimates which for DDs are over 10 years old. The objectives of our study were to: (1) assess the contribution of recurrent cases to the prevalence of DDs; (2) provide current, population-based recurrence risk estimates; and (3) examine characteristics of the first affected child as predictors of recurrence. Two population-based data sources were used to identify all children born to the same mother during the period 1981–91 in the five-county metropolitan Atlanta area with at least one of four DDs: mental retardation (MR), cerebral palsy, hearing loss, or vision impairment. Recurrence risk estimates for these DDs ranged from 3% to 7% and were many times higher than the background prevalences. The risk of recurrence of DDs was greatest for MR– approximately eight times greater than the baseline MR prevalence. Isolated mild MR (IQ 50–70) was highly concordant between siblings with MR. Sex, race, and birthweight of the index child, maternal education, and maternal age were not significantly associated with recurrence risk. Further research is needed to investigate the roles of genetic and environmental factors on the recurrence of DDs, particularly isolated mild MR. [ABSTRACT FROM AUTHOR]

Problem/condition: Autism spectrum disorder (ASD)., Period Covered: 2012., Description of System: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance system that provides estimates of the prevalence and characteristics of ASD among children aged 8 years whose parents or guardians reside in 11 ADDM Network sites in the United States (Arkansas, Arizona, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, South Carolina, Utah, and Wisconsin). Surveillance to determine ASD case status is conducted in two phases. The first phase consists of screening and abstracting comprehensive evaluations performed by professional service providers in the community. Data sources identified for record review are categorized as either 1) education source type, including developmental evaluations to determine eligibility for special education services or 2) health care source type, including diagnostic and developmental evaluations. The second phase involves the review of all abstracted evaluations by trained clinicians to determine ASD surveillance case status. A child meets the surveillance case definition for ASD if one or more comprehensive evaluations of that child completed by a qualified professional describes behaviors that are consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision 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 ASD prevalence estimates for children aged 8 years living in catchment areas of the ADDM Network sites in 2012, overall and stratified by sex, race/ethnicity, and the type of source records (education and health records versus health records only). In addition, this report describes the proportion of children with ASD with a score consistent with intellectual disability on a standardized intellectual ability test, the age at which the earliest known comprehensive evaluation was performed, the proportion of children with a previous ASD diagnosis, the specific type of ASD diagnosis, and any special education eligibility classification., Results: For 2012, the combined estimated prevalence of ASD among the 11 ADDM Network sites was 14.5 per 1,000 (one in 69) children aged 8 years. Estimated prevalence was significantly higher among boys aged 8 years (23.4 per 1,000) than among girls aged 8 years (5.2 per 1,000). Estimated ASD prevalence was significantly higher among non-Hispanic white children aged 8 years (15.3 per 1,000) compared with non-Hispanic black children (13.1 per 1,000), and Hispanic (10.2 per 1,000) children aged 8 years. Estimated prevalence varied widely among the 11 ADDM Network sites, ranging from 8.2 per 1,000 children aged 8 years (in the area of the Maryland site where only health care records were reviewed) to 24.6 per 1,000 children aged 8 years (in New Jersey, where both education and health care records were reviewed). Estimated prevalence was higher in surveillance sites where education records and health records were reviewed compared with sites where health records only were reviewed (17.1 per 1,000 and 10.4 per 1,000 children aged 8 years, respectively; p<0.05). Among children identified with ASD by the ADDM Network, 82% had a previous ASD diagnosis or educational classification; this did not vary by sex or between non-Hispanic white and non-Hispanic black children. A lower percentage of Hispanic children (78%) had a previous ASD diagnosis or classification compared with non-Hispanic white children (82%) and with non-Hispanic black children (84%). The median age at earliest known comprehensive evaluation was 40 months, and 43% of children had received an earliest known comprehensive evaluation by age 36 months. The percentage of children with an earliest known comprehensive evaluation by age 36 months was similar for boys and girls, but was higher for non-Hispanic white children (45%) compared with non-Hispanic black children (40%) and Hispanic children (39%)., Interpretation: Overall estimated ASD prevalence was 14.5 per 1,000 children aged 8 years in the ADDM Network sites in 2012. The higher estimated prevalence among sites that reviewed both education and health records suggests the role of special education systems in providing comprehensive evaluations and services to children with developmental disabilities. Disparities by race/ethnicity in estimated ASD prevalence, particularly for Hispanic children, as well as disparities in the age of earliest comprehensive evaluation and presence of a previous ASD diagnosis or classification, suggest that access to treatment and services might be lacking or delayed for some children., Public Health Action: The ADDM Network will continue to monitor the prevalence and characteristics of ASD among children aged 8 years living in selected sites across the United States. Recommendations from the ADDM Network include enhancing strategies to 1) lower the age of first evaluation of ASD by community providers in accordance with the Healthy People 2020 goal that children with ASD are evaluated by age 36 months and begin receiving community-based support and services by age 48 months; 2) reduce disparities by race/ethnicity in identified ASD prevalence, the age of first comprehensive evaluation, and presence of a previous ASD diagnosis or classification; and 3) assess the effect on ASD prevalence of the revised ASD diagnostic criteria published in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition.