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.

Capturing Unmet Therapy Need Among Young Children With Developmental Delay Using National Survey Data.

OBJECTIVE: Estimates of unmet therapy need based on parent report overlook the unmet needs of children with developmental delay (DD) whose parents do not first recognize a need for therapy. Using national survey, data we: 1) identified children with DD who likely need physical, occupational, or speech therapy services; 2) estimated the prevalence of overall unmet therapy need; and 3) examined factors associated with unrecognized therapy need and parent-reported unmet therapy need. METHODS: Criteria for DD were applied to children aged 0 to 4 years using the 2009-2010 National Survey of Children With Special Health Care Needs (NS-CSHCN). Multivariate logistic regression was used to identify factors associated with unrecognized or parent-reported unmet therapy need. RESULTS: Among 5349 children with special health care needs aged 0 to 4 years, 50.2% met our inclusion criteria for DD, 21.6% had overall unmet therapy need, 15.4% had unrecognized therapy needs, and 6.2% had parent-reported unmet therapy need. The adjusted odds of unrecognized therapy need were higher among black and Hispanic children, and children from other racial or ethnic groups than among white children (adjusted odds ratio 1.78 [95% confidence interval 1.23-2.57]). The odds of parent-reported unmet therapy need were higher for children lacking special education services. CONCLUSIONS: Relying on parent-reported unmet therapy need, without considering children with DD whose therapy needs go unrecognized, likely underestimates overall unmet therapy need among children with DD. Exploring the mechanisms underlying racial, ethnic, and socioeconomic disparities in overall unmet therapy need should facilitate the development of effective interventions aimed at improving therapy access for children with DD.

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

AIM: 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. METHOD: A population-based birth cohort study was conducted using the Autism and Developmental Disabilities Monitoring Network surveillance and birth data for 8-year-old children residing in multi-county areas in Alabama, Georgia, Missouri, and Wisconsin between 2002 and 2008. The birth cohort comparison group included 458 027 children and the case group included 1570 children with CP, 1202 with available birth records. χ(2) tests were performed to evaluate associations and logistic regression was used to calculate relative risks (RR) and adjusted odds ratios (OR) with 95% confidence intervals (CI). RESULTS: The risk of spastic CP was more than 50% higher for black versus white children (RR 1.52, 95% CI 1.33-1.73), and this greater risk persisted after adjustment for SES (OR 1.35, 95% CI 1.18-1.55), but not after further adjustment for preterm birth and size for gestational age. The protective effect of maternal education remained after adjustment for race/ethnicity and perinatal factors. INTERPRETATION: Maternal education appears to independently affect CP risk but does not fully explain existing racial disparities in CP prevalence in the US.

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

AIM: The aim of this study was to report the prevalence and characteristics of children with cerebral palsy (CP). METHOD: Children with CP (n=451) were ascertained by the Autism and Developmental Disabilities Monitoring (ADDM) Network, a population-based, record-review surveillance system monitoring CP in four areas of the USA. Prevalence was calculated as the number of children with CP among all 8-year-old children residing in these areas in 2008. Motor function was categorized by Gross Motor Function Classification System level and walking ability. Co-occurring autism spectrum disorders (ASD) and epilepsy were ascertained using ADDM Network surveillance methodology. RESULTS: The period prevalence of CP for 2008 was 3.1 per 1000 8-year-old children (95% confidence interval 2.8-3.4). Approximately 58% of children walked independently. Co-occurring ASD frequency was 6.9% and was higher (18.4%) among children with non-spastic CP, particularly hypotonic CP. Co-occurring epilepsy frequency was 41% overall, did not differ by ASD status or CP subtype, and was highest (67%) among children with limited or no walking ability. INTERPRETATION: The prevalence of CP in childhood from US surveillance data has remained relatively constant, in the range of 3.1 to 3.6 per 1000, since 1996. The higher frequency of ASD in non-spastic than in spastic subtypes of CP calls for closer examination.

Measuring exertion during caregiving of children and young adults with cerebral palsy who require assistance for mobility and self-care.

Our purpose was to compare objective and subjective measures of energy exertion during caregiving tasks. Participants were primary caregivers (N = 19) of children and young adults (aged 3 -22 years) with cerebral palsy (CP) who require assistance for mobility and self-care (67% classified in level V on the Gross Motor Function Classification System). Measures of exertion were collected during two caregiving tasks: (1) transfers and (2) dressing. Objective measures included volume of oxygen (V02), heart rate (HR), and the subjective measure was a rating of perceived exertion (Borg RPE). Controlling for baseline status, perceived exertion correlated with VO2 (0.43, p < .01) and HR (0.29, p < .01) during the tasks. Caregivers with high baseline HR and VO2, had high Borg RPE scores following a task. Correlations were found between HR and VO2 during caregiving tasks (0.63, p < .01). Patterns of association with caregiver and child characteristics were similar for VO2 and Borg RPE. Subjective measures of exertion appear to capture the strain of caregiving. Understanding a caregiver's perception of exertion can guide therapists in assessing the need for equipment, pharmacological, or respite interventions.

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.

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.

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 Prevention's 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.

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.

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 = 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.

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 = 15,793) or supportive (n = 23,376) 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 child's 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 child's 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.

Disparities in use of and unmet need for therapeutic and supportive services among school-age children with functional limitations: a comparison across settings.

OBJECTIVES: To determine whether family resources predict use of therapeutic and supportive services and unmet needs in medical versus educational settings. DATA SOURCE: Children 5-17 years of age with at least one functional limitation (n=3,434) from the 1994 to 1995 Disability Supplement to the U.S. National Health Interview Survey. STUDY DESIGN: Family resources included the child's type of health insurance, household education level, and poverty status. Therapeutic services included audiology; social work; occupational, physical, or speech therapy. Supportive services included special equipment, personal care assistance, respite care, transportation, or environmental modifications. Need was controlled by child health status and the severity and type of functional limitation(s). Age, gender, race/ethnicity, family size, and structure were covariates. DATA ANALYSIS METHODS: Logistic regression provided estimates of associations between-family resources and use of or unmet need for therapeutic and supportive services. Multinomial methods were used to determine therapeutic service outcomes in medical versus educational settings. PRINCIPAL FINDINGS: Children with public insurance were two to three times more likely to use services than children with private or no insurance regardless of type of service. Household education and public insurance were associated with supportive and therapeutic service use, but for therapeutic services only among children receiving services beyond the school setting. Household education predicted unmet need for both types of services and therapeutic services across settings. Findings should be interpreted cautiously, given the survey's dependence on respondent report to define the need for services and the potential for overrepresentation of children with more severe needs in the public insurance category. CONCLUSIONS: Disparities in the use of services by household education level and by type of health insurance across service settings suggests inequitable access among the U.S. policies and programs serving children with functional limitations. Family income and education appear to give families an advantage in obtaining services and in identifying a child's unmet need.

National survey of children with special health care needs: Wisconsin-specific data.

BACKGROUND: The National Center for Health Statistics developed and conducted (2000-2002) the National Survey of Children with Special Health Care Needs (CSHCN), a module of the State and Local Area Integrated Telephone Survey (SLAITS). OBJECTIVE: The purpose of this paper is to present the Wisconsin-specific data derived from analysis of the national survey and to make a comparison with the United States as a whole. RESULTS: In Wisconsin, approximately one fifth (21%) of households have CSHCN, and 13.4% of children have a special health care need; US comparison data are 20% and 12.8%, respectively. When examined by type of special need, Wisconsin shows slightly higher proportions of CSHCN in all categories, when compared with U.S. data, with the exception of limitation in activity. Families in Wisconsin with CSHCN are more likely to report being involved with medical decision making and satisfied with services they receive (67%); having a medical home (57%); having adequate insurance; easy use of community-based service systems (81%); and receiving services to make transition to adult life (7.5%). CONCLUSION: Though Wisconsin has a slightly higher proportion of CSHCN than the United States as a whole, a greater proportion of Wisconsin families receive important services. These measurements allow us to strive for further improvement through coordination of services in the private health care delivery sector with public health programs.

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.

El hombre y la cultura: investigación sobre los orígenes de la civilización contemporánea / Patterns of culture

La autora ha escrito este libro con el fin de desentrañarlos orígenes en que descansa la actual civilización y la compleja vida de tres pueblos primitivos: uno de Nueva Méjico, otro de la isla de Dobu y otro de la isla de Vancouver

El hombre y la cultura: investigación sobre los orígenes de la civilización contemporánea / Patterns of culture

La autora ha escrito este libro con el fin de desentrañarlos orígenes en que descansa la actual civilización y la compleja vida de tres pueblos primitivos: uno de Nueva Méjico, otro de la isla de Dobu y otro de la isla de Vancouver