Paul W. Newacheck

A New Definition of Children With Special Health Care Needs

* Abbreviations: MCH = : Maternal and Child Health (program) • CSHCN = : Children With Special Health Care Needs (program) • DSCSHCN = : (Maternal and Child Health Bureaus) Division of Services for Children With Special Health Care Needs. Developing community systems of services for children with special health care needs represents a significant challenge for pediatricians, families, managed care organizations, and public and private agencies providing services to this population. At the state level, Maternal and Child Health (MCH) and Children With Special Health Care Needs (CSHCN) programs are vested with the responsibility for planning and developing systems of care for all children with special health care needs. Historically, these programs have been supported through Title V of the Social Security Act, with state-matching funds, to provide health services to selected groups of children with special needs, typically those with complex physical conditions. However, during the last half-century, service systems have become increasingly complex as a result of health, education, and social policy changes, as well as changes in the epidemiology of child health, including increases in the number and proportion of children with chronic conditions and disabilities and changes in their case-mix.1-4 These changes have resulted in gaps in some service areas and duplication in other areas, as well as fragmentation in the way service systems are organized.5 Recognizing these difficulties, health policy leaders at the state and federal levels, with broad input from public and private agencies, providers, and families, effected legislative changes in the federal Omnibus Budget Reconciliation Act of 1989, which expanded the mission of CSHCN programs to facilitate the development of community-based systems of services for children with special health care needs and their families. Since then, the explosive growth of managed care has presented new challenges and opportunities as well as a heightened urgency for the development of systems of care that integrate health and related services for this population.6 7 Developing systems to serve children with special health care needs requires a clear definition of the population to … Address correspondence and reprint requests to: Merle McPherson, MD, Maternal and Child Health Bureau, Room 18A27, Parklawn Bldg, 5600 Fishers Ln, Rockville, MD 20857.

Childhood chronic illness: prevalence, severity, and impact.

BACKGROUND Using data from the 1988 National Health Interview Survey, this article presents national estimates of the prevalence and impact of childhood chronic conditions. METHODS Proxy responses to a checklist of child health conditions administered for 17,110 children under 18 years of age were used. Conditions were classified as chronic if they were first noticed more than 3 months prior to the interview or if they were the type that would ordinarily be of extended duration, such as arthritis. RESULTS An estimated 31% of children were affected by chronic conditions. Among these children, highly prevalent conditions included respiratory allergies 9.7 per 100, repeated ear infections 8.3 per 100 and asthma 4.3 per 100. These children can be divided into three groups: 66% with mild conditions that result in little or no bother or activity limitation; 29% with conditions of moderate severity that result in some bother or limitation of activity, but not both; and 5% with severe conditions that cause frequent bother and limitation of activity. The 5% with severe conditions accounted for 19% of physician contacts and 33% of hospital days related to chronic illness. CONCLUSIONS Childhood chronic conditions have highly variable impacts on childrens activities and use of health care.

Identifying children with special health care needs: Development and evaluation of a short screening instrument

BACKGROUND Public agencies, health care plans, providers, and consumer organizations share the need to monitor the health care needs and quality of care for children with special health care needs (CSHCN). Doing so requires a definition of CSHCN and a precise methodology for operationalizing that definition. RESEARCH OBJECTIVES The purpose of this study was to develop an efficient and flexible consequence-based screening instrument that identifies CSHCN across populations with rates commensurate with other studies of CSHCN. METHODS The CSHCN Screener was developed using the federal Maternal and Child Health Bureau (MCHB) definition of CSHCN and building on the conceptual and empirical properties of the Questionnaire for Identifying Children with Chronic Conditions (QuICCC) and other consequence-based models for identifying CSHCN. The CSHCN Screener was administered to 3 samples: a national sample of households with children (n = 17985), children enrolled in Medicaid managed care health plans (n = 3894), and children receiving Supplemental Security Income (SSI) benefits in Washington State (n = 1550). The efficiency, impact of further item reduction, and flexibility of administration mode were evaluated. Rates and expected variation in rates across demographic groups of children positively identified by one or more of the 5 CSHCN Screener item sequences in each sample were examined and multinomial logistic regression analysis were conducted to evaluate the effect of child characteristics in predicting positive identification. RESULTS The CSHCN Screener took approximately 1 minute per child to administer by telephone and 2.1 minutes per household. During self-administration, over 98% of respondents completed each of the 5 CSHCN Screener item sequences, and respondents accurately followed each of the item skip patterns 94% of the time. Mailed surveys and telephone-administered surveys led to similar rates of positive identification in the same sample. Two Screener items would have identified 80%-90% of children positively identified as CSHCN across the study samples, although using only 2 items eliminates some children with more complex health needs. Rates of children identified by the CSHCN Screener varied according to age, sex, race/ethnicity, health status, and utilization of health services. CONCLUSIONS Results of this study indicate that the CSHCN Screener requires minimal time to administer, is acceptable for use as both an interview-based and self-administered survey, and that rates of children positively identified by the CSHCN Screener vary according to child demographic, health, and health care-need characteristics. The CSHCN Screener provides a comprehensive yet parsimonious and flexible method for identifying CSHCN, making it more feasible than existing measures for standardized use across public agencies, health care plans, and other users.

An Epidemiologic Profile of Children With Special Health Care Needs

Objective. To present an epidemiologic profile of children with special health care needs using a new definition of the population developed by the federal Maternal and Child Health Bureau. Methods. We operationalized the new definition using the recently released 1994 National Health Interview Survey on Disability. Estimates are based on 30 032 completed interviews for children <18 years old. The overall response rate was 87%. Results. Eighteen percent of US children <18 years old in 1994, or 12.6 million children nationally, had a chronic physical, developmental, behavioral, or emotional condition and required health and related services of a type or amount beyond that required by children generally. This estimate includes children with existing special health care needs but excludes the at-risk population. Prevalence was higher for older children, boys, African-Americans, and children from low-income and single-parent households. Children with existing special health care needs had three times as many bed days and school absence days as other children. An estimated 11% of children with existing special health care needs were uninsured, 6% were without a usual source of health care, 18% were reported as dissatisfied with one or more aspects of care received at their usual source of care, and 13% had one or more unmet health needs in the past year. Conclusions. A substantial minority of US children were identified as having an existing special health care need using national survey data. Children with existing special health care needs are disproportionately poor and socially disadvantaged. Moreover, many of these children face significant barriers to health care.

Health Insurance and Access to Primary Care for Children

BACKGROUND Numerous studies have demonstrated that insurance status influences the amount of ambulatory care received by children, but few have assessed the role of insurance as a determinant of childrens access to primary care. We studied the effect of health insurance on childrens access to primary care. METHODS We analyzed a sample of 49,367 children under 18 years of age from the 1993-1994 National Health Interview Survey, a nationwide household survey. The overall rate of response was 86.5 percent. The survey included questions on insurance coverage and access to primary care. RESULTS An estimated 13 percent of U.S. children did not have health insurance in 1993-1994. Uninsured children were less likely than insured children to have a usual source of care (75.9 percent vs. 96.2 percent, P<0.001). Among those with a usual source of care, uninsured children were more likely than insured children to have no regular physician (24.3 percent vs. 13.8 percent, P<0.001), to be without access to medical care after normal business hours (11.8 percent vs. 7.1 percent, P<0.001), and to have families that were dissatisfied with at least one aspect of their care (19.6 percent vs. 14.0 percent, P=0.01). Uninsured children were more likely than insured children to have gone without needed medical, dental, or other health care (22.2 percent vs. 6.1 percent, P<0.001). Uninsured children were also less likely than insured children to have had contact with a physician during the previous year (67.4 percent vs. 83.8 percent, P<0.001). All differences remained significant after we controlled for potential confounders using linear and logistic regression. CONCLUSIONS Among children, having health insurance is strongly associated with access to primary care. The new childrens health insurance program enacted as part of the Balanced Budget Act of 1997 may substantially improve access to and use of primary care by children.

Prevalence and impact of disabling chronic conditions in childhood.

OBJECTIVES This study provides a current national profile of the prevalence and impact of chronic conditions causing childhood disability. Disability is defined as a long-term reduction in ability to conduct social role activities, such as school or play, because of a chronic physical or mental condition. METHODS A cross-sectional descriptive analysis was performed on data from 99513 children younger than 18 years who were included in the 1992-1994 National Health Interview Survey. The response rate exceeded 93% during each year. RESULTS A significant proportion of children, estimated at 6.5% of all US children, experienced some degree of disability. The most common causes of childhood disability were respiratory diseases and mental impairments. Prevalence of disability was higher for older children, boys, and children from low-income and single-parent families. Childhood disability is estimated to result in 66 million restricted activity days annually, including 24 million days lost from school. Furthermore, disability in childhood results in an added 26 million physician contacts and 5 million hospital days annually. CONCLUSIONS Childhood disability has profound impacts on children, the education system, and the health care system.

Access to health care for children with special health care needs.

Objective. To assess the role health insurance plays in influencing access to care and use of services by children with special health care needs. Methods. We analyzed data on 57 553 children younger than 18 years old included in the 1994–1995 National Health Interview Survey on Disability. The survey obtained information on special health care needs, insurance status, and access to and use of health services. Bivariate and multivariate analyses were used to assess the association of insurance with several measures of access and utilization, including usual source of care, site of usual care, missed or delayed care, and use of ambulatory physician services. Results. Using the federal Maternal and Child Health Bureau definition of children with special health care needs, we estimate that 18% of US children under 18 years old had an existing special health care need in 1994–1995. An estimated 89% of these children had some form of health insurance coverage, most often private health insurance. Insured children were more likely than uninsured children to have a usual source of care (96.9% vs 79.2%). Among those with a usual source of care, insured children were more likely than uninsured children to have an identified regular clinician (87.6% vs 80.7%). Insured children were less likely to report unmet health needs, including medical care (2.2% vs 10.5%), dental care (6.1% vs 23.9%), prescriptions, and/or eyeglasses (3.1% vs 12.3%), and mental health care (.9% vs 3.4%). Insured children were also more likely to have a physician contact in the past year (89.3% vs 73.6%) and have more physician contacts on an annual basis (8.5 vs 4.1 contacts). Unexpectedly, no differences were found between insured and uninsured children in availability of after hours medical care (evenings and weekends) or satisfaction with care. We also found some modest differences in access between publicly and privately insured children. Privately insured children were more likely to have a usual source of care (97.6% vs 95.3%) and a regular clinician (91.0% vs 81.1%). Privately insured children were also less likely to report dissatisfaction with care at their usual site of care (14.9% vs 21.0%) and have access to care on evenings and weekends (6.8% vs 13.4%). No substantial differences were found between privately and publicly insured children in prevalence of unmet health needs or delays in obtaining care due to cost. Conclusions. This study illustrates the importance of health insurance for children with special health care needs. Continued efforts are needed to ensure that all children with special health care needs have insurance and that remaining access and utilization barriers for currently insured children with special health care needs are also addressed.

Influences on Children's Oral Health: A Conceptual Model

OBJECTIVES. Despite marked improvements over the past century, oral health in America is a significant problem: caries is the most common chronic disease of childhood. Much oral health research examines influences primarily in the oral cavity or focuses on a limited number of individual-level factors. The purpose of this article was to present a more encompassing conceptual model of the influences on childrens oral health. METHODS. The conceptual model presented here was derived from the population health and social epidemiology fields, which have moved toward multilevel, holistic approaches to analyze the complex and interactive causes of childrens health problems. It is based on a comprehensive review of major population and oral health literatures. RESULTS. A multilevel conceptual model is described, with the individual, family, and community levels of influence on oral health outcomes. This model incorporates the 5 key domains of determinants of health as identified in the population health literature: genetic and biological factors, the social environment, the physical environment, health behaviors, and dental and medical care. The model recognizes the presence of a complex interplay of causal factors. Last, the model incorporates the aspect of time, recognizing the evolution of oral health diseases (eg, caries) and influences on the child-host over time. CONCLUSIONS. This conceptual model represents a starting point for thinking about childrens oral health. The model incorporates many of the important breakthroughs by social epidemiologists over the past 25 years by including a broad range of genetic, social, and environmental risk factors; multiple pathways by which they operate; a time dimension; the notion of differential susceptibility and resilience; and a multilevel approach. The study of childrens oral health from a global perspective remains largely in its infancy and is poised for additional development. This work can help inform how best to approach and improve childrens oral health.

A Review of the Evidence for the Medical Home for Children With Special Health Care Needs

from stool and bronchoalveolar lavage fluid in intubated infants, and every infant who developed IC was identified and IC-related mortality was eliminated.5 All neonates with IC had a BW of 1000 g, and 15 (94%) of 16 had a gestational age of 27 weeks. Therefore, from our data, neonates with a gestational age of 27 weeks and BW of 1000 g represent the “preterm subpopulation” that would benefit most from FP. A more-precise identification of the higher-risk neonates in the NICU would be a prelude to the elaboration of more-effective prophylactic measures and should delay or prevent the emergence of resistance. Indeed, the critical question will be to find the corrected age when the immune system can face up to Candida spp to develop effective preventive strategies. Our data provide evidence that the age is somewhere around 27 weeks.

Race, ethnicity, and access to ambulatory care among US adolescents.

OBJECTIVES Improving the health of minority adolescents will require a better understanding of factors that influence their access to and use of health care. This study describes the differences in health care access and use among White, Black and Hispanic adolescents and evaluates how such differences are influenced by insurance. METHODS We used data on 7465 10- to 17-year-olds included in the child health supplement to the 1988 National Health Interview Survey. RESULTS Much higher proportions of Blacks (16%) and Hispanics (28%) than of Whites (11%) were uninsured. Despite having worse reported health status, Black and Hispanic adolescents made notably fewer doctor visits in the past year than their White peers, and were more apt to lack usual sources of routine and acute care as well as continuity between sources of care. Having health insurance was associated with greater increase in access and usage measures for minority youth than for White youth. However, racial differences persisted even after adjusting for health insurance, family income, need, and other factors. CONCLUSIONS Minority adolescents are particularly vulnerable to the problems of health care access that affect all youth. While health insurance is especially important for increasing appropriate health care use among minority youth, nonfinancial methods of enabling more equitable use also deserve further study.