Ruth E. Benedict

Prevalence of cerebral palsy in 8-year-old children in three areas of the United States in 2002: a multisite collaboration.

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 = 114897). 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.

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).

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.

Quality medical homes: meeting children's needs for therapeutic and supportive services.

OBJECTIVE. The objective of this study was to determine whether the quality of a medical home is associated with access to needed therapeutic and supportive services among children with special health care needs. METHODS. Data from the 2000–2001 National Survey of Children With Special Health Care Needs were used in the analysis. The primary group of interest was children who were 0 to 17 years of age and needed therapeutic (n = 15793) or supportive (n = 23376) services. For each characteristic of a quality medical home, the percentage of children who needed and received therapeutic and supportive services was generated. Logistic regression was used to control for covariates while modeling the association between overall quality of a childs medical home and having unmet needs for therapeutic or supportive services. RESULTS. Of all children identified as needing services, 16.2% had unmet therapeutic and 9.8% unmet supportive service needs. Only 23.9% of the children who needed therapeutic and 32.5% of children who needed supportive services met the criteria of having a quality medical home. High-quality care within medical homes was associated with a decreased likelihood of having unmet needs for therapeutic and supportive services. Each characteristic of a quality medical home was associated with unmet need, as were severity of the childs condition, family income of <200% of the federal poverty level, underinsurance, and maternal education beyond high school. CONCLUSIONS. Among other factors, having a poor-quality medical home seems to be a barrier to receiving needed therapeutic or supportive services for children with special health care needs. Efforts on the part of pediatricians to establish quality medical homes for all children could have the added benefit of facilitating access to needed therapeutic and supportive services and promoting the health and well-being of children with special health care needs and their families.

Identifying children in need of ancillary and enabling services: a population approach

Children with chronic or disabling conditions use health, education and social services at a higher rate than their healthy peers. Estimates of the number of children in need of these specialized services are widely varied and often depend on categorical definitions that do not account for either the diversity or commonality of their experiences. Developing methods for identifying the population in need of services, particularly children likely to use long-term ancillary (audiology, occupational, physical or speech therapy, or social work) and/or enabling services (special equipment, personal care assistance, respite care, transportation, or environmental modifications), is essential for effective policy and program implementation. This study examines several recent attempts to operationalize definitions of children with chronic conditions using a noncategorical classification approach. Particular emphasis is placed on the subgroup of children identified as having functional limitations. Proposed operational definitions of children with functional limitations are compared using data from the 1994-1995 Disability Supplement to the US National Health Interview Survey. Estimates of the number of children reported to be using ancillary and enabling services are generated and compared across operational definitions of functional limitation as well as by the number, severity, and type (i.e. mobility, self-care, communication/sensory, social cognition/learning ability) of limitation. Depending on the operational definition selected, 9-14% of US community-dwelling children are estimated to have functional limitations. Among children with limitations, 26-30% regularly use ancillary services and 11-14% use enabling services. The strengths, limitations, and potential applications for each operational definition are discussed.

Prevalence of Cerebral Palsy among 8-Year-Old Children in 2010 and Preliminary Evidence of Trends in Its Relationship to Low Birthweight

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.

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.

The role of socio-economic status and perinatal factors in racial disparities in the risk of cerebral palsy.

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.