Carrie L. Arneson

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.

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.

Prevalence of cerebral palsy, co‐occurring autism spectrum disorders, and motor functioning – Autism and Developmental Disabilities Monitoring Network, USA, 2008

The aim of this study was to report the prevalence and characteristics of children with cerebral palsy (CP).

Potential Impact of DSM-5 Criteria on Autism Spectrum Disorder Prevalence Estimates

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 childrens 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: Autism and Developmental Disabilities Monitoring Network, three sites, United States, 2004†

BACKGROUND Cerebral palsy (CP) is the most common cause of motor disability in children and an important public health issue in the United States. The Autism and Developmental Disabilities Monitoring (ADDM) Network is a multisite program funded by the Centers for Disease Control and Prevention to determine trends in the prevalence of children with developmental disabilities, including CP, in the United States. This report describes population-based estimates of CP prevalence among 8-year-old children in three sites in the United States. METHODS The ADDM Network conducted surveillance of CP among 8-year-old children living in north central Alabama, metropolitan Atlanta, and south central Wisconsin in 2004 (N = 68,272). This multisite collaboration involved the retrospective collection, linking, and analysis of data from multiple service providers and the population census estimates. RESULTS The average prevalence of CP in 2004 across the three sites was 3.3 per 1,000 (95% confidence interval, 2.9-3.8). The prevalence was significantly higher in boys than in girls overall (male/female ratio, 1.4:1). The most common subtype across all three sites was spastic CP, ranging from 85% in Georgia to 89% in Alabama and Wisconsin. CONCLUSIONS Ongoing, systematic, population-based surveillance in different areas of the United States is needed to describe and monitor CP prevalence. In addition, enhancing the surveillance system to include information about functional abilities is needed to better understand the public health impact of CP and strategies for improving quality of life and participation in activities at home and in the community.

Brief Report: Association Between Behavioral Features and Gastrointestinal Problems Among Children with Autism Spectrum Disorder

Recent reports suggest certain behaviors among children with autism spectrum disorders (ASD) may indicate underlying gastro-intestinal (GI) problems, and that the presence of these behaviors may help alert primary care providers to the need to evaluate a child with ASD for GI problems. The purpose of this population-based study of 487 children with ASD, including 35 (7.2%) with a medically documented history of GI problems, was to compare behavioral features of children with and without a history of GI problems. Unusual sleeping or eating habits and oppositional behavior were significantly associated with GI problems. These behaviors, however, were frequent in both children with and without GI problems, suggesting they may have limited utility in a screening capacity for GI problems.

Wisconsin Twin Panel: Current Directions and Findings

The Wisconsin Twin Panel is based on the population of all twins born in the state of Wisconsin, United States. Our research focus is the etiology and developmental course of early emotions, temperament, childhood anxiety and impulsivity, the autism spectrum, auditory and tactile sensory sensitivity, and related psychobiological and behavioral phenotypes. We employ a range of research methods including structured interviews with caregivers, observer ratings, child self-report, home-based behavioral batteries, biological measures of basal and reactive cortisol, palm prints, birth records, genotyping, cognitive testing, and questionnaires. Reported results highlight the utility of employing multiple modes of assessment when studying child development and psychopathology.

Children with cerebral palsy: racial disparities in functional limitations.

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.

Feasibility and reliability of classifying gross motor function among children with cerebral palsy using population-based record surveillance

For conditions with wide-ranging consequences, such as cerebral palsy (CP), population-based surveillance provides an estimate of the prevalence of case status but only the broadest understanding of the impact of the condition on children, families or society. Beyond case status, information regarding health, functional skills and participation is necessary to fully appreciate the consequences of the condition. The purpose of this study was to assess the feasibility and reliability of enhancing population-based surveillance by classifying gross motor function (GMF) from information available in medical records of children with CP. We assessed inter-rater reliability of two GMF classification methods, one the Gross Motor Function Classification System (GMFCS) and the other a 3-category classification of walking ability: (1) independently, (2) with handheld mobility device, or (3) limited or none. Two qualified clinicians independently reviewed abstracted evaluations from medical records of 8-year-old children residing in southeast Wisconsin, USA who were identified as having CP (n = 154) through the Centers for Disease Control and Preventions Autism and Developmental Disabilities Monitoring Network. Ninety per cent (n = 138) of the children with CP had information in the record after age 4 years and 108 (70%) had adequate descriptions of gross motor skills to classify using the GMFCS. Agreement was achieved on 75.0% of the GMFCS ratings (simple kappa = 0.67, 95% confidence interval [95% CI 0.57, 0.78], weighted kappa = 0.83, [95% CI 0.77, 0.89]). Among case children for whom walking ability could be classified (n = 117), approximately half walked independently without devices and one-third had limited or no walking ability. Across walking ability categories, agreement was reached for 94% (simple kappa = 0.90, [95% CI 0.82, 0.96], weighted kappa = 0.94, [95% CI 0.89, 0.98]). Classifying GMF in the context of active records-based surveillance is feasible and reliable. Future surveillance efforts that include functional level among children with cerebral palsy may provide important information for monitoring the impact of the condition for programmatic and policy purposes.