Children with special health care needs (SHCNs) are an important population from health care services, economic, and policy perspectives. However, until recently, no national data on their prevalence and health care service needs that use a commonly accepted definition have existed.
To provide national estimates of the number of children with SHCNs and their characteristics, including an assessment of how well their needs are being met.
The United States.
Interviews were conducted by telephone with the families of 38 866 children with SHCNs younger than 18 years using the State and Local Area Integrated Telephone Survey platform developed by the Centers for Disease Control and Prevention, Atlanta, Ga.
Main Outcome Measures
Prevalence of SHCNs, demographic and socioeconomic correlates of SHCNs, access to care, satisfaction with care, and impact on the family.
An estimated 12.8% of US children experienced an SHCN in 2001. Prevalence was highest among boys, school-age children, and children in lower-income families. A substantial minority of these children experienced unmet health needs (17.7%) or lacked critical elements of family-centered health care (33.5%). The impact on families was pronounced, as 20.9% reported their child's health care caused financial problems, and 29.9% reported cutting back or quitting work because of their child's condition. These adverse child- and family-level impacts were concentrated among low-income and uninsured children with SHCNs.
Children with SHCNs and their families represent an important underserved population. In addition, substantial disparities are present in access, satisfaction, and family impact.
Children with special health care needs (SHCNs; hereafter referred to as SHCN children), defined by the federal Maternal and Child Health Bureau (MCHB) as those children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health care–related services of a type or amount beyond that required by children generally,1 are an important population from health care services, economic, and policy perspectives. In addition to the limitations related to their condition, they are at heightened risk for having mental and behavioral health problems,2,3 bed days and school absence days,4 unmet health care needs,4,5 and unscheduled intensive care unit admissions.6 Having a child with SHCN also has an impact on the family. Parents of SHCN children are less likely to have full-time employment and more likely to have Medicaid insurance.7 Economically, it has been estimated that SHCN children account for more than half of all child-related health care costs.8
Until now, no state and nationally representative data on the prevalence and impact of SHCNs have been available.4,9 Consequently, federal and state health policymakers have been hampered by the absence of information needed for planning and evaluation of services for the population of SHCN children. In response to these needs, the first national and state survey of SHCN children was sponsored by the federal MCHB in 2001.
In the present report, we used this large-scale survey to (1) provide national estimates of the number and proportion of SHCN children in the United States; (2) examine the risk factors for having a child with an SHCN; and (3) assess how well the needs of SHCN children are being met.
The National Survey of Children With Special Health Care Needs was conducted by the MCHB in conjunction with the National Center for Health Statistics, Hyattsville, Md. Its purposes were to identify SHCN children, provide state-level estimates of SHCN children, and obtain information on the factors associated with the child's functional status and the family's experiences with the health system.10
The survey was conducted using a list-assisted random-digit-dial telephone survey method. It was built onto the existing State and Local Area Integrated Telephone Survey, which is conducted by the National Center for Health Statistics. The survey was administered to a representative sample of households in each of the 50 states and the District of Columbia.
The survey was conducted in 3 parts. First, selected demographic information was collected for all children younger than 18 years. Next, the CSHCN Screener was administered at the family level to identify whether children in the household had any SHCN.11 The CSHCN Screener is composed of 5 multipart questions that identify children who have a medical, behavioral, or other health condition that has lasted or is expected to last at least 1 year, and report at least 1 of the following consequences of the condition: (1) using or needing more medical care services, mental health services, or education services than other children of the same age; (2) using or needing prescription medication; (3) having limitations in their ability to do the things most children of the same age do; (4) using or needing special therapy, such as physical, occupational, or speech therapy; or (5) using or needing emotional, developmental, or behavioral treatment or counseling.1 The CSHCN Screener was developed by a multidisciplinary task force using the MCHB definition as its conceptual basis.11
When a child was identified as having an SHCN through the screening questions, then a comprehensive battery of questions was administered. This comprehensive battery included questions covering health and functional status, access to and use of health care services, health insurance coverage, care coordination, satisfaction with care, and impact on the family. This battery was administered only for children identified with an SHCN. When more than 1 child in a household was identified as having an SHCN, one of those children was randomly selected to be the subject of the comprehensive battery. This battery was not administered for children without SHCNs. The survey was translated into 11 different languages for non-English speakers. Languages other than English accounted for 5.5% of the household screening interviews.12 The final national sample included 38 866 children identified with SHCNs. The weighted National Council of American Survey Research Organizations response rate, which provides an overall measure of survey response by taking into account all phases of the data collection effort, was 61.1%.12 The survey was approved by the institutional review board of the National Center for Health Statistics, and all human subjects gave written informed consent. The detailed survey methods and questionnaire are available online.13
This investigation estimates the number and percentage of noninstitutionalized children in the United States who could be considered as having an SHCN and examines selected factors associated with a greater likelihood of having a child with an SHCN.
Among SHCN children, this analysis further examines the following 3 groups of outcomes: access to care (5 items, including unmet health care needs, unmet family support needs, absence of a usual source of care, absence of a personal physician or nurse, and difficulty in receiving specialty referrals); an overall measure of satisfaction with care that is a composite of 5 items (meeting information needs, making the parent feel like a partner, being sensitive to family values and culture, spending enough time, and listening to family concerns); and impact on the family (3 items, including financial burden, time spent in caretaking, and lost employment opportunities). These outcome measures were examined in relation to sociodemographic variables, health insurance coverage, and functional ability factors. The sociodemographic variables examined were the child's age, sex, race and ethnicity, family income, and region of the country.14 Functional ability was measured by the frequency and degree to which the child's condition affected his or her ability to do the things done by other children of the same age.
The data were collected through a complex, multistage sample design. Therefore, all analyses used sampling weights based on the 2000 Census and the 1999-2001 Current Population Survey to adjust for nonresponse bias and other discrepancies between the sampled children and known characteristics of the US noninstitutionalized population of children. The weighted data are representative of the noninstitutionalized population of children generally, and of SHCN children specifically.12 All of the analyses were conducted using the Survey Data Analysis software program, a statistical analysis program designed to calculate accurate variances from complex sample surveys.15 We present bivariate statistics and adjusted odds ratios (ORs) computed from multivariate logistic regressions. All differences described in the text are significant at the .05 level unless otherwise specified.
Using the MCHB definition, we found that almost 13% of children in the United States have had an SHCN (Table 1). There was a higher prevalence among older children, boys, and non-Hispanic white and black children. After adjusting for the sociodemographic factors, older children were about twice as likely to be reported as having an SHCN compared with children younger than 6 years. Boys were about 50% more likely to have an SHCN. Non-Hispanic white, black, and other racial/ethnic groups were all more likely to report having a child with an SHCN than were Hispanics. After adjustment for demographic factors, families in poverty were significantly more likely to have a child screened as having an SHCN.
Most families of SHCN children did not report difficulties with access to care or dissatisfaction with care. However, Table 2 indicates that notable problems did exist. Almost 18% of SHCN children were reported to have had an unmet need for a specific health care service (any of 14 primary and specialty care services, ancillary services, and supplies and equipment), and about 22% of SHCN children who needed a referral had difficulty obtaining it. Furthermore, disparities appear to exist in this population regarding access to care. Non-Hispanic black and Hispanic families, families with lower incomes, families without full health insurance coverage, and families where the child was usually affected by their condition were more likely to report access problems, particularly with issues such as unmet needs and referrals for specialty care. The composite measure of satisfaction with family-centered care followed a somewhat similar pattern. This measure emphasizes the extent to which care provided by the child's physicians and nurses was centered on the family's needs and not simply the child's medical condition. One third of the families reported being usually or always dissatisfied with at least 1 aspect of their child's care.
Significant proportions of families who have a child with an SHCN reported major impacts on the family (Table 3). Almost 21% of the families reported financial problems because of the child's condition. Almost 15% reported spending a large amount of time each week providing for the child's care. Furthermore, almost 30% of the families reported that at least 1 family member had to reduce or stop employment because of the child's condition. Financial problems were most likely to be reported by families living in poverty, families without full health insurance for the child, and families with the most severely affected children. The families who spent the most time arranging care were those with younger children, lower incomes, no health insurance, and a severely affected child. Changes in employment were more likely among Hispanic families and those with younger children, lower incomes, no health insurance, and a severely affected child.
The results of the weighted logistic regressions for each of these outcomes are presented in Table 4 and Table 5. There were variations among the access-to-care measures as to the factors associated with each outcome. Those in or near poverty were significantly more likely to report access problems for each indicator, except unmet needs for family support services. Families whose child was most severely affected were significantly more likely to report having unmet needs for health care services (OR, 4.20) and family support services (OR, 12.66) and difficulty obtaining referrals (OR, 2.66). Families without health insurance coverage were also at higher risk for having access problems. There were significant regional variations, with families in the West often having higher risks than those in the Northeast.
Table 4 also shows the factors associated with the composite measure of satisfaction with care. Compared with non-Hispanic white families, Hispanic and non-Hispanic black families were usually significantly more likely to be dissatisfied with their child's care. There were gradients by poverty level; the lower the family income, the more likely they were to report being dissatisfied. Families without health insurance coverage whose children were most severely affected and who lived in the West were more likely than other families to report being dissatisfied with their child's care.
Families whose children were most severely affected by their condition were 5 to 6½ times more likely to report a major impact on the family than families whose children were never affected by their condition (Table 5). Once again, lower family income levels and having no health insurance were predictive of a major familial impact caused by the child's condition.
The National Survey of Children With Special Health Care Needs provides the first source of national- and state-level data on the size and characteristics of the population of SHCN children. Overall, the survey shows that 12.8% of US noninstitutionalized children had an SHCN during 2001, translating into an estimated 9.3 million children in the United States younger than 18 years. Additional children are at risk but are not included in this estimate.
A variety of approaches have been used over time to identify and classify children with chronic health problems. The most common of these has involved the recognition of an individual health condition that has been or is expected to be of lengthy duration, such as diabetes, asthma, or autism. Although from a biomedical research perspective, a need for the study of individual childhood chronic conditions continues, the condition-specific approach has limited practical usefulness for identifying and tracking SHCN children for quality assurance, risk adjustment, and other purposes.16- 18 Indeed, it was the need for a widely applicable definition for health care services research, quality assurance in managed care, and policy and program development at the federal and state levels of government that led to the broad-based definition used herein.1 This definition is now widely used for program planning in the federal and state Maternal and Child Health Programs and serves as the basis for identifying SCHN children in the Health Employer Data and Information Set consumer satisfaction surveys. To put the 12.8% prevalence estimate generated in this survey in context, past epidemiological studies of children with chronic conditions have yielded prevalence estimates ranging from about 5% to nearly 30%, with estimates at the low end including only children with disabling chronic conditions and estimates at the high end including conditions with no significant medical or functional consequences.16,19- 23
Our study showed disparities among who was identified as a child with an SHCN. Older children, boys, and children living in poverty were all more likely to be reported as having an SHCN, as were non-Hispanic white and black children and those of other races compared with Hispanic children. These findings are similar to those of Newacheck et al,4 except that in their study, African American families were more likely than white ones to have a child with an SHCN. The lower rate for Hispanics could reflect a true difference in health status, linguistic barriers in responding to the survey instrument, or diagnostic bias resulting from depressed access to care.24,25
Perhaps our most important findings concern the disparities we found in access, satisfaction, and impact on the family. We found consistent patterns of disparities whereby children disadvantaged by low family income, minority racial and ethnic status, lack of health insurance, and greater severity of functional limitations also experienced significantly worse access to care than their more advantaged counterparts. We found similar patterns of disparities for the composite measure of satisfaction with care.
Having a child with an SHCN can result in financially burdensome health care expenses, substantial caretaking demands, and lost parental employment opportunities. Again, disparities were evident in each of these measures of family impact. Families at or below the poverty level were significantly more likely to report each of these effects. Families with the most severely affected children suffered the greatest impact on their finances, time, and employment. These findings suggest that the time and financial commitment of having a child with an SHCN can contribute toward a family's cycle of poverty. Gaps in access to care because of limited or no health insurance coverage can exacerbate this situation.
Our analysis was designed to assess and describe the population of SHCN children and to provide an overview of disparities within this population in impact on the family and access to and satisfaction with health care. The consistency of our findings provides important evidence concerning the magnitude of disparities present in this population. Research is now needed to assess in greater depth the nature of these disparities. The recent report by Mayer et al,26 profiling in some depth children with SHCNs and unmet needs, is an example of the kind of research that is needed and can be accomplished with this new survey.
There are certain limitations of this study. The data are based on self-report and not confirmed by medical records, and they may be subject to possible response and recall bias. The data were collected cross sectionally; therefore, conclusions on cause and effect cannot be drawn from this survey. In addition, telephone surveys do not reach families without telephones. These families are disproportionately poor and near poor, so biases could be created. Sample weights for the State and Local Area Integrated Telephone Survey mechanism are adjusted using results from other household interview surveys sponsored by the Centers for Disease Control and Prevention to compensate for this potential source of bias.12 Furthermore, we included indicators of race and ethnicity in our models to identify underserved populations for policy purposes; these indicators should not be considered as explanatory variables. A major advantage of the State and Local Area Integrated Telephone Survey mechanism is its capacity for the collection of state level data. That feature is being used by the MCHB and state Title V agencies to assess differences in prevalence, access, satisfaction, and family impact across the states.
The release of data from the National Survey of Children With Special Health Care Needs provides an opportunity to measure how well SHCN children are being served from the unique perspective of their families. Although many of these children appear to be receiving the services they need, our findings suggest that children in low-income families, those in selected racial and ethnic minority groups, and those without health insurance experience disproportionate barriers to accessing care, have lower rates of access to care, and are less likely to be satisfied with the services they receive. Much of the underlying problem is that the health care service system for these children is highly fragmented. Moreover, service delivery initiatives often focus on individual conditions, such as asthma or autism, and not the needs of the diverse mix of children with SHCNs. To address the disparities raised by the survey data, we need systemic change that establishes universal, sustainable community systems of services for all affected children and their families. This kind of system of care is envisioned in the President's New Freedom Initiative.5
There is much literature describing the epidemiology of childhood chronic conditions. However, many of these studies are now dated, few are population based, and even fewer have used the recently adopted federal definition of SHCN children. For program planning and epidemiological study purposes, new data are needed to describe the prevalence of SHCNs and their impact on children, families, and the health system.
This study presents new nationally representative survey data characterizing the prevalence and impact of SHCN children. The findings provide a sociodemographic profile of the population and provide new insights into their access to care and unmet needs, satisfaction with care, and impact on the family.
Correspondence: Michael D. Kogan, PhD, Maternal and Child Health Bureau, Health Resources and Services Administration, 5600 Fishers Lane, Room 18-41, Rockville, MD 20857 (email@example.com).
Accepted for publication March 31, 2004.
We thank Marcie Cynamon, MA, Stephen Blumberg, PhD, Matthew Bramlett, PhD, Julian Luke, and Kathy O'Connor, MPH, of the National Center for Health Statistics for their expert assistance in the design and data collection of the survey and their statistical assistance.
The opinions expressed herein are those of the authors and do not necessarily reflect the views of the institutions with which the authors are affiliated.
van Dyck PC, Kogan MD, McPherson MG, Weissman GR, Newacheck PW. Prevalence and Characteristics of Children With Special Health Care Needs. Arch Pediatr Adolesc Med. 2004;158(9):884–890. doi:10.1001/archpedi.158.9.884
* * SCHEDULED MAINTENANCE * *
The JAMA Network Sites will be conducting routine maintenance from 10/20/2017 through 10/21/2017. During this window access to content and authentication may be intermittently available. The JAMA Store will be completely unavailable during the maintenance window.