Laura A. Schieve

Trends in the Prevalence of Developmental Disabilities in US Children, 1997–2008

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 ∼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.

Advanced Parental Age and the Risk of Autism Spectrum Disorder

This study evaluated independent effects of maternal and paternal age on risk of autism spectrum disorder. A case-cohort design was implemented using data from 10 US study sites participating in the Centers for Disease Control and Preventions Autism and Developmental Disabilities Monitoring Network. The 1994 birth cohort included 253,347 study-site births with complete parental age information. Cases included 1,251 children aged 8 years with complete parental age information from the same birth cohort and identified as having an autism spectrum disorder based on Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision criteria. After adjustment for the other parents age, birth order, maternal education, and other covariates, both maternal and paternal age were independently associated with autism (adjusted odds ratio for maternal age ≥35 vs. 25–29 years = 1.3, 95% confidence interval: 1.1, 1.6; adjusted odds ratio for paternal age ≥40 years vs. 25–29 years = 1.4, 95% confidence interval: 1.1, 1.8). Firstborn offspring of 2 older parents were 3 times more likely to develop autism than were third- or later-born offspring of mothers aged 20–34 years and fathers aged <40 years (odds ratio = 3.1, 95% confidence interval: 2.0, 4.7). The increase in autism risk with both maternal and paternal age has potential implications for public health planning and investigations of autism etiology.

The relationship between autism and parenting stress.

OBJECTIVE. We assessed associations between parenting a child with autism and stress indicators. METHODS. In the 2003 National Survey of Children’s Health, parents or other knowledgeable adult respondents for children aged 4 to 17 years reported their recent feelings about their life sacrifices to care for their child, difficulty caring for their child, frustration with their child’s actions, and anger toward their child. Responses were compiled in the Aggravation in Parenting Scale. Parents of children reported to have autism (N = 459) were compared with parents of: (1) children with special health care needs including emotional, developmental, or behavioral problems other than autism that necessitated treatment (children with other developmental problems [N = 4545]); (2) children with special health care needs without developmental problems (N = 11475); and (3) children without special health care needs (N = 61826). Weighted estimates are presented. RESULTS. Parents of children with autism were more likely to score in the high aggravation range (55%) than parents of children with developmental problems other than autism (44%), parents of children with special health care needs without developmental problems (12%), and parents of children without special health care needs (11%). However, within the autism group, the proportion of parents with high aggravation was 66% for those whose child recently needed special services and 28% for those whose child did not. The parents of children with autism and recent special service needs were substantially more likely to have high aggravation than parents of children with recent special service needs in each of the 3 comparison groups. Conversely, parents of children with autism but without recent special service needs were not more likely to have high aggravation than parents of children with other developmental problems. CONCLUSIONS. Parenting a child with autism with recent special service needs seems to be associated with unique stresses.

Perinatal outcome among singleton infants conceived through assisted reproductive technology in the United States

OBJECTIVE: To examine perinatal outcome among singleton infants conceived with assisted reproductive technology (ART) in the United States. METHODS: Subjects were 62,551 infants born after ART treatments performed in 1996–2000. Secular trends in low birth weight (LBW), very low birth weight (VLBW), preterm delivery, preterm LBW, and term LBW were examined. Detailed analyses were performed for 6,377 infants conceived in 2000. Observed numbers were compared with expected using a reference population from the 2000 U.S. natality file. Adjusted risk ratios were calculated. RESULTS: The proportion of ART singletons born LBW, VLBW, and term LBW decreased from 1996 to 2000. The proportion delivered preterm and preterm LBW remained stable. After adjustment for maternal age, parity, and race/ethnicity, singleton infants born after ART in 2000 had elevated risks for all outcomes in comparison with the general population of U.S. singletons: LBW standardized risk ratio 1.62 (95% confidence interval 1.49, 1.75), VLBW 1.79 (1.45, 2.12), preterm delivery 1.41 (1.32, 1.51), preterm LBW 1.74 (1.57, 1.90), and term LBW 1.39 (1.19, 1.59). Risk ratios for each outcome remained elevated after restriction to pregnancies with only 1 fetal heart or any of 7 other categories: parental infertility diagnosis of male factor, infertility diagnosis of tubal factor, conception using in vitro fertilization without intracytoplasmic sperm injection or assisted hatching, conception with intracytoplasmic sperm injection, conception in a treatment with extra embryos available, embryo culture for 3 days, and embryo culture for 5 days. CONCLUSION: Singletons born after ART remain at increased risk for adverse perinatal outcomes; however, risk for term LBW declined from 1996 to 2000, whereas preterm LBW was stable. LEVEL OF EVIDENCE: III

Assisted reproductive technology and major structural birth defects in the United States.

BACKGROUND With >1% of US births occurring following use of assisted reproductive technology (ART), it is critical to examine whether ART is associated with birth defects. METHODS We analyzed data from the National Birth Defects Prevention Study, a population-based, multicenter, case-control study of birth defects. We included mothers of fetuses or live-born infants with a major birth defect (case infants) and mothers who had live-born infants who did not have a major birth defect (control infants), delivered during the period October 1997-December 2003. We compared mothers who reported ART use (IVF or ICSI) with those who had unassisted conceptions. Multiple logistic regression was used to adjust for the following confounders: maternal race/ethnicity, maternal age, smoking and parity; we stratified by plurality. RESULTS ART was reported by 1.1% of all control mothers, and by 4.5% of control mothers 35 years or older. Among singleton births, ART was associated with septal heart defects (adjusted odds ratio [aOR] = 2.1, 95% confidence intervals [CI] 1.1-4.0), cleft lip with or without cleft palate (aOR = 2.4, 95% CI 1.2-5.1), esophageal atresia (aOR = 4.5, 95% CI 1.9-10.5) and anorectal atresia (aOR = 3.7, 95% CI 1.5-9.1). Among multiple births, ART was not significantly associated with any of the birth defects studied. CONCLUSIONS These findings suggest that some birth defects occur more often among infants conceived with ART. Although the mechanism is not clear, couples considering ART should be informed of all potential risks and benefits.

Medically advised, mother's personal target, and actual weight gain during pregnancy.

OBJECTIVE To evaluate whether advice on pregnancy weight gain from health care professionals, womens target weight gain (how much weight women thought they should gain), and actual weight gain corresponded with the 1990 Institute of Medicine recommendations. METHODS Predominantly white, middle-class women participating in a mail panel reported their prepregnancy weights, heights, and advised and target weight gains on a prenatal questionnaire (n = 2237), and their actual weight gains on a neonatal questionnaire (n = 1661). Recommended weight gains were categorized for women with low body mass index (BMI) (less than 19.8 kg/m2) as 25-39 lb; for women with average BMI (19.8-26.0 kg/m2) as 25-34 lb; and for women with high BMI (more than 26.0-29.0 kg/m2) and very high BMI (more than 29.0 kg/m2) as 15-24 lb. RESULTS Twenty-seven percent of the women reported that they had received no medical advice about pregnancy weight gain. Among those who received advice, 14% (95% confidence interval [CI] 12%, 16%) had been advised to gain less than the recommended range and 22% (95% CI 20%, 24%) had been advised to gain more than recommended. The odds of being advised to gain more than recommended were higher among women with high BMIs and with very high BMIs compared with women with average BMIs. Black women were more likely than white women to report advice to gain less than recommended. Advised and target weight gains were associated strongly with actual weight gain. Receiving no advice was associated with weight gain outside the recommendations. CONCLUSION Greater efforts are required to improve medical advice about weight gain during pregnancy.

Socioeconomic inequality in the prevalence of autism spectrum disorder: evidence from a U.S. cross-sectional study.

Background This study was designed to evaluate the hypothesis that the prevalence of autism spectrum disorder (ASD) among children in the United States is positively associated with socioeconomic status (SES). Methods A cross-sectional study was implemented with data from the Autism and Developmental Disabilities Monitoring Network, a multiple source surveillance system that incorporates data from educational and health care sources to determine the number of 8-year-old children with ASD among defined populations. For the years 2002 and 2004, there were 3,680 children with ASD among a population of 557 689 8-year-old children. Area-level census SES indicators were used to compute ASD prevalence by SES tertiles of the population. Results Prevalence increased with increasing SES in a dose-response manner, with prevalence ratios relative to medium SES of 0.70 (95% confidence interval [CI] 0.64, 0.76) for low SES, and of 1.25 (95% CI 1.16, 1.35) for high SES, (P<0.001). Significant SES gradients were observed for children with and without a pre-existing ASD diagnosis, and in analyses stratified by gender, race/ethnicity, and surveillance data source. The SES gradient was significantly stronger in children with a pre-existing diagnosis than in those meeting criteria for ASD but with no previous record of an ASD diagnosis (p<0.001), and was not present in children with co-occurring ASD and intellectual disability. Conclusions The stronger SES gradient in ASD prevalence in children with versus without a pre-existing ASD diagnosis points to potential ascertainment or diagnostic bias and to the possibility of SES disparity in access to services for children with autism. Further research is needed to confirm and understand the sources of this disparity so that policy implications can be drawn. Consideration should also be given to the possibility that there may be causal mechanisms or confounding factors associated with both high SES and vulnerability to ASD.

Autism Spectrum Disorder and Co-occurring Developmental, Psychiatric, and Medical Conditions Among Children in Multiple Populations of the United States

Background: Autism spectrum disorders (ASDs) often co-occur with other developmental, psychiatric, neurologic, or medical diagnoses. Objective: This study examined co-occurring non-ASD diagnoses and symptoms in a population-based cohort of 8 year olds identified with ASD. Method: Data on 2,568 children meeting surveillance case definition for ASD were collected by a multi-site surveillance program. Information was systematically abstracted and reviewed from existing health and education source records and systematically entered into a summary record in a secure database. Results: Eighty-one percent of study children were male; 63% white, 23% black, 14% Hispanic, Asian, or not stated. When age of ASD classification was available, 20% were classified before age 3 years, 36% between ages 3 and 5 years, and 44% after age 5 years. The co-occurrence of ≥1 non-ASD developmental diagnoses was 83%, ≥1 psychiatric diagnoses was 10%, ≥1 neurologic diagnoses was 16%, and at least one possibly causative genetic or neurologic diagnosis was 4%. Children with a previous ASD classification and co-occurring psychiatric or neurologic conditions were more likely to be diagnosed or classified at a later age. Each category of co-occurring non-ASD diagnosis was significantly increased in children whose records did not include an ASD diagnosis or educational classification but who met surveillance criteria for ASD. Conclusions: These data highlight the need for clinicians to keep in mind the high prevalence of associated diagnoses with an ASD diagnosis, and the possibility that in younger children other symptoms or disorders may be masking or obscuring core symptoms of ASD, which would lead to a diagnosis.

Urinary tract infection during pregnancy: its association with maternal morbidity and perinatal outcome.

OBJECTIVES. The effects of antepartum urinary tract infection on adverse maternal and perinatal outcomes were examined. Antepartum urinary tract infection has been previously implicated as a risk factor for numerous outcomes. METHODS. Crude and multivariable analyses were performed with a perinatal registry cohort of 25,746 mother/infant pairs. RESULTS. Elevated risks were observed for exposure to urinary tract infection and low birthweight, prematurity, preterm low birthweight, premature labor, hypertension/preeclampsia, maternal anemia, and amnionitis. Urinary tract infection was associated with perinatal death only among subjects 20 to 29 years of age. CONCLUSIONS. These findings underscore the importance of antepartum urine screening to identify patients at risk for adverse outcomes.

Health Care Use and Health and Functional Impact of Developmental Disabilities Among US Children, 1997-2005

OBJECTIVE To present nationally representative estimates of health-related limitations, needs, and service use among US children with and without developmental disabilities (DDs). DESIGN Retrospective analysis of data from a sample of US households from the 1997-2005 National Health Interview Surveys. PARTICIPANTS Children aged 3 to 17 years (n = 95 132). MAIN OUTCOME MEASURES Parents or other knowledgeable adults reported on their childrens DDs, health needs, and use of health and education services. Developmental disabilities included attention-deficit/hyperactivity disorder, autism, blindness, cerebral palsy, deaf/a lot of trouble hearing, learning disability, mental retardation, seizures, stuttering/stammering, and other developmental delay. RESULTS Among children with 1 or more DDs, prevalence estimates for limitations in movement (6.1%), needed help with personal care (3.2%), needed special equipment (3.5%), received home health care (1.4%), and regularly took prescription medication(s) (37.5%) were 4 to 32 times higher than for children without DDs. Children with DDs were 2 to 8 times as likely to have had more than 9 health care visits (14.9%), received special education (38.8%), had a surgical or medical procedure (7.5%), and recently visited a medical specialist (23.9%), mental health professional (26.6%), therapist/allied health professional (19.6%), and/or emergency department (10.3%). Effects were generally stable during the study interval and independent of age, race, sex, and family income. Cerebral palsy, autism, mental retardation, blindness, and deafness/a lot of trouble hearing were associated with the highest levels of health and functional impact indicators. CONCLUSIONS Developmental disabilities profoundly affect childrens health and functioning. These data can inform evidence-based targeted prevention strategies for minimizing functional limitations and lifetime disability. Additional study of unmet needs and access to care is needed.