Peter C. van Dyck

A National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005–2006

OBJECTIVES. We sought to examine the health care experiences of children with autism spectrum disorder and the impact of autism spectrum disorder on the family and to assess whether having a medical home is associated with less family impact. METHODS. We used the 2005–2006 National Survey of Children With Special Health Care Needs to compare 2088 children with special health care needs, aged 3 to 17 years, reported by their parents to have autism spectrum disorder, with children with special health care needs with “other emotional, developmental, or behavioral problems” (excluding autism spectrum disorder; n = 9534) and 26751 other children with special health care needs. We used weighted logistic regression to examine unmet needs for specific health care and support services, delayed care, no usual care source or personal physician, difficulty receiving referrals, and financial, employment, or time problems because of childs care. RESULTS. Nationally, an estimated 535000 children have special health care needs and autism spectrum disorder, a prevalence of 86 per 10000 children aged 3 to 17 years. Among children with special health care needs, 5.6% have autism spectrum disorder. Compared with other children with special health care needs without emotional, developmental, or behavioral problems, children with special health care needs with autism spectrum disorder were more likely to have unmet needs for specific health care services, family support services, delayed or foregone care, difficulty receiving referrals, and care that is not family centered. Children with special health care needs with autism spectrum disorder were more likely to live in families that report financial problems, need additional income for the childs medical care, reduce or stop work because of the childs condition, spend ≥10 hours per week providing or coordinating care, and paid more than

Racial/Ethnic, Socioeconomic, and Behavioral Determinants of Childhood and Adolescent Obesity in the United States: Analyzing Independent and Joint Associations

1000 in the previous year for the childs care. The financial impacts of autism spectrum disorder were significantly more burdensome when children with special health care needs did not have a medical home. CONCLUSIONS. Children with special health care needs with autism spectrum disorder are significantly more likely to have problems regarding access to care and unmet needs, and their families have greater financial, employment, and time burdens compared with other children with special health care needs. Receipt of primary care in a medical home may reduce these burdens.

Changes in State-Specific Childhood Obesity and Overweight Prevalence in the United States From 2003 to 2007

PURPOSE This study examines independent and joint associations between several socioeconomic, demographic, and behavioral characteristics and obesity prevalence among 46,707 children aged 10-17 years in the United States. METHODS The 2003 National Survey of Childrens Health was used to calculate obesity prevalence. Logistic regression was used to estimate odds of obesity and adjusted prevalence. RESULTS Ethnic minority status, non-metropolitan residence, lower socioeconomic status (SES) and social capital, higher television viewing, and higher physical inactivity levels were all independently associated with higher obesity prevalence. Adjusted obesity prevalence varied by age, gender, race/ethnicity, and SES. Compared with affluent white children, the odds of obesity were 2.7, 1.9 and 3.2 times higher for the poor Hispanic, white, and black children, respectively. Hispanic, white, and black children watching television 3 hours or more per day had 1.8, 1.9, and 2.5 times higher odds of obesity than white children who watched television less than 1 hour/day, respectively. Poor children with a sedentary lifestyle had 3.7 times higher odds of obesity than their active, affluent counterparts (adjusted prevalence, 19.8% vs. 6.7%). CONCLUSIONS Race/ethnicity, SES, and behavioral factors are independently related to childhood and adolescent obesity. Joint effects by gender, race/ethnicity, and SES indicate the potential for considerable reduction in the existing disparities in childhood obesity in the United States.

The National Survey of Children with Special Health Care Needs

OBJECTIVE To examine changes in state-specific obesity and overweight prevalence among US children and adolescents between 2003 and 2007. DESIGN Temporal cross-sectional analysis of the 2003 and 2007 National Survey of Childrens Health data. SETTING The 50 states and the District of Columbia. PARTICIPANTS A total of 46 707 and 44 101 children aged 10 to 17 years in 2003 and 2007, respectively. MAIN OUTCOME MEASURES Prevalence and odds of obesity and overweight, differentials in which were examined by bivariate and logistic regression analyses. RESULTS In 2007, 16.4% of US children were obese and 31.6% were overweight. The prevalence of obesity varied substantially across the states, with Mississippi having the highest prevalence (21.9%) and Oregon the lowest prevalence (9.6%). Overweight prevalence varied from a low of 23.1% for children in Utah to a high of 44.5% for children in Mississippi. Between 2003 and 2007, obesity prevalence increased by 10% for all US children and by 18% for female children, declined by 32% for children in Oregon, and doubled among female children in Arizona and Kansas. Children in Illinois, Tennessee, Kentucky, West Virginia, Georgia, and Kansas had more than twice the adjusted odds of being obese than children in Oregon. Individual, household, and neighborhood social and built environmental characteristics accounted for 45% and 42% of the state variance in childhood obesity and overweight, respectively. CONCLUSIONS Substantial geographic disparities in childhood obesity and overweight exist, with an apparent shift toward higher prevalence in 2007 for several states. Marked geographic disparities indicate the potential for considerable reduction in US childhood obesity.

A Vision of the Future of Newborn Screening

CONTEXT The federal and state-level Children with Special Health Care Needs (CSHCN) programs are vested with the responsibility for planning and developing systems of care for children with special health care needs. To support achievement of this goal, the federal Maternal and Child Health Bureau (MCHB), in partnership with the National Center for Health Statistics (NCHS), has developed a new survey that will provide uniform national and state data on the prevalence and impact of special health care needs among children. PURPOSE The National Survey of CSHCN is designed to produce reliable state- and national-level estimates of the prevalence of special health care needs using MCHBs definition of CSHCN. It will also provide baseline estimates for federal and state Title V Maternal and Child Health performance measures, for Healthy People 2010 national prevention objectives, and for each states Title V needs assessment. In addition, it will provide a resource for researchers, advocacy groups, and other interested parties. It is anticipated that this survey will be repeated periodically, thereby making trend analysis possible. METHODS This survey is being conducted using the State and Local Area Integrated Telephone Survey mechanism, which shares the random-digit-dial sampling frame of the National Immunization Survey (sponsored by the National Immunization Program and NCHS). Using the CSHCN Screener, developed under the auspices of the Foundation for Accountability, 750 children with special health care needs will be identified and selected from each state and from the District of Columbia. Parents or guardians of these children then complete a comprehensive battery of questions on demographics, health and functional status, health insurance coverage, adequacy of health insurance coverage, public program participation, access to care, utilization of health care services, care coordination, satisfaction with care, and the impact of the special need on the family. Data collection began in October 2000 and will continue through March 2002. Summary reports and electronic data files will be available to the public within 6 to 12 months following completion of data collection. CONCLUSIONS The National Survey of CSHCN will offer a unique data source for individuals and organizations interested in understanding and improving service delivery for CSHCN. It is an accomplishment that reflects the contributions of state and federal Title V programs, family organizations, provider organizations, health services researchers, and the broader maternal and child health community.

The National Survey of Children's Health: A New Data Resource

In 40 years, newborn screening has evolved to become a standard component of preventive public health. Despite its widespread acceptance, efforts need to be made to overcome some significant problems. There is inequity in the conditions for which states screen routinely, and many conditions that could be screened for are not, for economic or logistic reasons. Existing (tandem mass spectrometry) and potential (DNA microarray) technologies could be developed and put in place to correct these existing shortcomings. To do so will require investment in the technologies, combined with public and professional education and provision of a high-quality, accessible system for confirmation of diagnoses, family counseling, initiation of treatment, and the opportunity to participate in research to develop new or improved therapies.

Geographic Disparities in Access to the Medical Home Among US CSHCN

Context: Federal and state maternal and child health programs are responsible for promoting and improving the health and well-being of children. To support achievement of this goal, the federal Maternal and Child Health Bureau (MCHB) in partnership with the National Center for Health Statistics (NCHS), Centers for Disease Control and Prevention has developed a new survey that will provide uniform national and state data on the health and well-being of children, as well as the characteristics of their families and neighborhoods. Purpose: The National Survey of Childrens Health was designed to produce reliable and representative state- and national-level estimates for Healthy People 2010 national prevention objectives, for each states Title V needs assessment, and for Title V program planning and evaluation. In addition, it will provide a new data resource for researchers, advocacy groups, and other interested parties. It is anticipated that this survey will be repeated periodically, making trend analysis possible. Methods: This survey was conducted using the State and Local Area Integrated Telephone Survey (SLAITS) mechanism, which shares the random-digit-dial sampling frame of the National Immunization Survey (sponsored by the National Immunization Program and NCHS). Using the SLAITS platform, interviews on approximately 2000 children were conducted in each state and the District of Columbia. The parent or guardian most knowledgeable about the child completed a battery of questions on health and development, health insurance coverage, access to care, utilization of health care services, presence of a medical home, family functioning, parental health, and neighborhood characteristics. Data collection began in January 2003 and continued through April 2004. Summary reports and electronic data files will be available to the public by early 2005. Conclusion: This is the second state and national survey jointly completed by MCHB and NCHS. It is designed to complement the 2001 National Survey of Children with Special Health Care Needs by providing data on the health of the general child population.

Assessing and Ensuring a Comprehensive System of Services for Children With Special Health Care Needs: A Public Health Approach

OBJECTIVES: In this study we examined geographic disparities in medical home access among US children with special health care needs (CSHCN) aged 0 to 17 years. METHODS: The 2005–2006 National Survey of Children With Special Health Care Needs was used to estimate prevalence and odds of not having a medical home and 5 component outcomes according to state. Logistic regression was used to examine individual-level and state-level determinants of access. RESULTS: Medical home access varied substantially across geographic areas. CSHCN in Alaska, Arizona, Washington, DC, Florida, Illinois, Massachusetts, New Jersey, Nevada, and Virginia had at least 50% higher adjusted odds of not having a medical home than CSHCN in Iowa. The adjusted prevalence of CSHCN lacking a medical home varied from a low of 46% in Iowa and Ohio to a high of 59% in Alaska and 61% in New Jersey. CSHCN in several western and southwestern states experienced greater problems with access to a personal doctor/nurse, a usual source of care, specialty care referrals, care coordination, and family-centered care. Adjustment for age, gender, race/ethnicity, household socioeconomic status, language use, insurance coverage, and functional limitation reduced state disparities in access. CSHCN in states with higher immigrant and non–English-speaking populations had significantly lower medical home access. Increases in state health care expenditure and infrastructure and Medicaid/State Childrens Health Insurance Program eligibility were associated with increased access to a personal doctor/nurse. CONCLUSIONS: Although individual-level sociodemographic and state-level health policy variables are important predictors of access, substantial geographic disparities remain, with CSHCN in several western and northeastern states at high risk of not having a medical home.

American Academy of Pediatrics Newborn Screening Task Force Recommendations: How Far Have We Come?

The US Department of Health and Human Services called for comprehensive systems of services for children with special health care needs in its Healthy People 2000 and 2010 health care objectives for the nation. We report on the proportion of children with special health care needs receiving care in high-quality systems of services measured by attainment of 6 essential system elements, or quality indicators, generated from a survey of 40,723 families of children with special health care needs in 2005 to 2006. Only 17.7% of children with special health care needs received services in a high-quality service system that met all 6 quality indicators in 2005-2006. Therefore, much more work lies ahead to meet the national Healthy People objective for these children.

Naming and Counting Disorders (Conditions) Included in Newborn Screening Panels

The partnership of the Health Resources and Services Administration (HRSA)/Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP) for improving health care for all children has long been recognized. In 1998, the establishment of the Newborn Screening Task Force marked a major initiative in addressing the needs of the newborn screening system. At the request of HRSA/MCHB, the AAP convened the task force to ensure that pediatric clinicians assumed a leadership role in examining the totality of the newborn screening system, including the necessary linkage to medical homes. The task forces report, published in 2000, outlined major recommendations for federal, state, and other national partners in addressing the identified barriers and needed enhancements of the care delivery system. Today, manifestations of the task forces recommendations are evident, many of which occurred under the leadership of HRSA/MCHB and the AAP. These activities are detailed in this article, with a discussion of future progression toward a quality, consistent, coordinated system of care for children identified with positive newborn screening results, their families, and the child health professionals who care for them.