Evidence regarding the age at which autism spectrum disorder (ASD) is identified is essential for improving early detection, yet many extant studies have not applied time-to-event analyses, which ...account for statistical biases that arise from sampling in cross-sectional surveys by adjusting for child age at time of parental report. Our objective was to estimate age distributions for first identification of ASD in national parent surveys using time-to-event analyses.
We conducted time-to-event analyses of responses to identical questions in the 2011 to 2012 National Survey of Children's Health (n = 95,677) and the 2009 to 2010 National Survey of Children with Special Health Care Needs (n = 371,617).
Parents in both surveys reported that a minority of ASD cases were identified before age 3 years, and that one-third to one-half of cases were identified after 6 years. In both surveys, a majority of parents described their child's ASD severity as mild, and these parents reported the oldest age at identification (mean, 5.6 and 8.6 years). In contrast, parents who described their child's ASD as severe reported earlier age at identification (mean, 3.7 and 4.5 years). Time-to-event analyses yielded older estimates of age at identification than analyses based on raw distributions.
In two national surveys, a majority of parents of children with ASD reported identification after 3 years, when eligibility for early intervention services expires, and many reported identification of ASD after school age. Later identification of children with milder symptoms highlights the need for early screening that is sensitive to all forms of ASD, regardless of severity.
The prevalence of familial hypercholesterolemia (FH) is commonly reported as 1 in 500. European reports suggest a higher prevalence; the US FH prevalence is unknown.
The 1999 to 2012 National Health ...and Nutrition Examination Survey (NHANES) participants ≥20 years of age (n=36 949) were analyzed to estimate the prevalence of FH with available Dutch Lipid Clinic criteria, including low-density lipoprotein cholesterol and personal and family history of premature atherosclerotic cardiovascular disease. Prevalence and confidence intervals of probable/definite FH were calculated for the overall population and by age, sex, obesity status (body mass index ≥30 kg/m(2)), and race/ethnicity. Results were extrapolated to the 210 million US adults ≥20 years of age. The estimated overall US prevalence of probable/definite FH was 0.40% (95% confidence interval, 0.32-0.48) or 1 in 250 (95% confidence interval, 1 in 311 to 209), suggesting that 834 500 US adults have FH. Prevalence varied by age, being least common in 20 to 29 year olds (0.06%, 1 in 1557) and most common in 60 to 69 year olds (0.85%, 1 in 118). FH prevalence was similar in men and women (0.40%, 1 in 250) but varied by race/ethnicity (whites: 0.40%, 1 in 249; blacks: 0.47%, 1 in 211; Mexican Americans: 0.24%, 1 in 414; other races: 0.29%, 1 in 343). More obese participants qualified as probable/definite FH (0.58%, 1 in 172) than nonobese (0.31%, 1 in 325).
FH, defined with Dutch Lipid Clinic criteria available in NHANES, affects 1 in 250 US adults. Variations in prevalence by age and obesity status suggest that clinical criteria may not be sufficient to estimate FH prevalence.
Since 2000, the Autism and Developmental Disabilities Network (ADDM) has published detailed prevalence estimates for autism spectrum disorder (ASD) among 8 year-olds, which are widely interpreted as ...the U.S. national prevalence of ASD. Although differences in state-level ASD prevalence has been reported, state-level heterogeneity has not been explored systematically. We analyzed state-level estimates and trends in ASD prevalence from 2000 to 2012 using secondary data from bi-annual ADDM reports. Heterogeneity among state-level ASD prevalence estimates were apparent in 2000 and grew between 2000 and 2012. Findings highlight the need for greater understanding of how children with ASD are identified by the medical and educational systems, which has significant implications for the state-level resources required to effectively manage ASD.
The American Academy of Pediatrics recommends autism spectrum disorder screening at the 18- and 24-month well-child visits. However, despite widespread toddler screening, many children are not ...diagnosed until school age, and delayed diagnosis is more common among low-income and minority children. Offering autism spectrum disorder screening at preschool well-child checks might reduce disparities and lower the overall age of diagnosis and service initiation. However, screening tools that span the preschool ages and are tailored for primary care are needed.
Lay abstract
Pediatric primary care providers check for autism signs, usually using a standard checklist, at 18- and 24-month well-child visits. When the checklist shows possible autism, children should be referred for additional treatment and evaluation with an autism specialist. However, many children with autism spectrum disorder are not detected as toddlers. Low-income and minority children are particularly likely to have a late autism spectrum disorder diagnosis. Checking for autism at preschool-aged well-child visits might be one way to identify autism spectrum disorder earlier, especially for low-income and minority children.
Health disparities in ASD detection affect children’s access to subsequent interventions. We examined potential disparities in implementation of a multi-stage ASD screening and diagnostic evaluation ...protocol in Part C Early Intervention with 4943 children ages 14–36 months (mean 22.0 months; 62.9% boys, 73.3% children of color, 34.9% non-English-primary language, 64.5% publicly-insured). Participation and follow-through were high (64.9% and 65.3% at first- and second-stage screening, respectively, 84.6% at diagnostic evaluation). Logistic regressions identified predictors of screening participation and outcomes at each stage; demographic differences (race, language, public insurance) were observed only at first-stage screening and reflected higher participation for children of color and higher positive screens for publicly-insured children. Results suggest the multi-stage screening protocol shows promise in addressing disparities in early diagnosis.
Recent mandates and recommendations for formal screening programs are based on the claim that pediatric care providers underidentify children with developmental-behavioral disorders, yet the research ...to support this claim has not been systematically reviewed.
To review research literature for studies regarding pediatric primary care providers' identification of developmental-behavioral problems in children.
On the basis of a Medline search conducted on September 22, 2010, using relevant key words, we identified 539 articles for review. We included studies that (1) were conducted in the United States, (2) were published in peer-reviewed journals, (3) included data that addressed pediatric care providers' identification of developmental-behavioral problems in individual patients, (4) included an independent assessment of patients' developmental-behavioral problems, such as diagnostic interviews or validated screening instruments, and (5) reported data sufficient to calculate sensitivity and specificity. Studies were not limited by sample size. Eleven articles met these criteria. We used Quality Assessment of Diagnostic Accuracy Studies (QUADAS) criteria to evaluate study quality. Although the studies were similar in many ways, heterogeneous methodology precluded a meta-analysis.
Sensitivities for pediatric care providers ranged from 14% to 54%, and specificities ranged from 69% to 100%. The authors of 1 outlier study reported a sensitivity of 85% and a specificity of 61%.
Pediatricians are often the first point of entry into developmental and mental health systems. Knowing their accuracy in identifying children with developmental-behavioral disabilities is essential for implementing optimal evaluation programs and achieving timely identification. Moreover, these statistics are important to consider when planning large-scale screening programs.
Universal developmental screening is widely recommended, yet studies of the accuracy of commonly used questionnaires reveal mixed results, and previous comparisons of these questionnaires are ...hampered by important methodological differences across studies.
To compare the accuracy of 3 developmental screening instruments as standardized tests of developmental status.
This cross-sectional diagnostic accuracy study recruited consecutive parents in waiting rooms at 10 pediatric primary care offices in eastern Massachusetts between October 1, 2013, and January 31, 2017. Parents were included if they were sufficiently literate in the English or Spanish language to complete a packet of screening questionnaires and if their child was of eligible age. Parents completed all questionnaires in counterbalanced order. Participants who screened positive on any questionnaire plus 10% of those who screened negative on all questionnaires (chosen at random) were invited to complete developmental testing. Analyses were weighted for sampling and nonresponse and were conducted from October 1, 2013, to January 31, 2017.
The 3 screening instruments used were the Ages & Stages Questionnaire, Third Edition (ASQ-3); Parents' Evaluation of Developmental Status (PEDS); and Survey of Well-being of Young Children (SWYC): Milestones.
Reference tests administered were Bayley Scales of Infant and Toddler Development, Third Edition, for children aged 0 to 42 months, and Differential Ability Scales, Second Edition, for older children. Age-standardized scores were used as indicators of mild (80-89), moderate (70-79), or severe (<70) delays.
A total of 1495 families of children aged 9 months to 5.5 years participated. The mean (SD) age of the children at enrollment was 2.6 (1.3) years, and 779 (52.1%) were male. Parent respondents were primarily female (1325 88.7%), with a mean (SD) age of 33.4 (6.3) years. Of the 20.5% to 29.0% of children with a positive score on each questionnaire, 35% to 60% also received a positive score on a second questionnaire, demonstrating moderate co-occurrence. Among younger children (<42 months), the specificity of the ASQ-3 (89.4%; 95% CI, 85.9%-92.1%) and SWYC Milestones (89.0%; 95% CI, 86.1%-91.4%) was higher than that of the PEDS (79.6%; 95% CI, 75.7%-83.1%; P < .001 and P = .002, respectively), but differences in sensitivity were not statistically significant. Among older children (43-66 months), specificity of the ASQ-3 (92.1%; 95% CI, 85.1%-95.9%) was higher than that of the SWYC Milestones (70.7%; 95% CI, 60.9%-78.8%) and the PEDS (73.7%; 95% CI, 64.3%-81.3%; P < .001), but sensitivity to mild delays of the SWYC Milestones (54.8%; 95% CI, 38.1%-70.4%) and of the PEDS (61.8%; 95% CI, 43.1%-77.5%) was higher than that of the ASQ-3 (23.5%; 95% CI, 9.0%-48.8%; P = .012 and P = .002, respectively). Sensitivity exceeded 70% only with respect to severe delays, with 73.7% (95% CI, 50.1%-88.6%) for the SWYC Milestones among younger children, 78.9% (95% CI, 55.4%-91.9%) for the PEDS among younger children, and 77.8% (95% CI, 41.8%-94.5%) for the PEDS among older children. Attending to parents' concerns was associated with increased sensitivity of all questionnaires.
This study found that 3 frequently used screening questionnaires offer adequate specificity but modest sensitivity for detecting developmental delays among children aged 9 months to 5 years. The results suggest that trade-offs in sensitivity and specificity occurred among the questionnaires, with no one questionnaire emerging superior overall.
Parents of children diagnosed with autism spectrum disorders (ASD) express concern about raising their children bilingually, and often hear advice from professionals against the use of bilingualism. ...The current study examined the relation between bilingualism and the language and social communication skills of toddlers diagnosed with ASD (N = 353) in the US, while controlling for socioeconomic risk factors. Structural equation modeling showed no differences in language skills between bilingual Spanish–English speaking children and monolingual English-speaking (
p
= .596) or monolingual Spanish-speaking (
p
= .963) children and showed a bilingual advantage on socialization skills when comparing bilingual and monolingual English-speaking children (
p
= .001). Parents of autistic children exposed to Spanish and English should be encouraged to raise their child bilingually if it best suits familial needs.
In their recommendations on screening for autism and developmental disabilities, the American Academy of Pediatrics recommends referral subsequent to a positive screening result. In this article, we ...argue that positive screening results are not always sufficient to justify a referral. We show that although positive predictive values are often low, they actually overstate the probability of having a disorder for many children who screen positive. Moreover, recommended screening thresholds are seldom set to ensure that the benefits of referral will equal or exceed the costs and risk of harm, which is a necessary condition for an optimal threshold in decision analysis. Drawing on recent recommendations for the Institute of Medicine/National Academy of Medicine, we discuss the implications of this argument for pediatric policy, education, and practice. In particular, we recommend that screening policies be revised to ensure that the costs and benefits of actions recommended in the event of a positive screen are appropriate to the screening threshold. We recommend greater focus on clinical decision-making in the education of physicians, including shared decision-making with patients and their families. Finally, we recommend broadening the scope of screening research to encompass not only the accuracy of specific screening instruments, but also their ability to improve decision-making in the context of systems of care.
PDF
