OBJECTIVE. The goal was to evaluate whether having a functional limitation was associated with health care needs and experiences of children with special health care needs.
METHODS. We used caregivers' responses in the National Survey of Children with Special Health Care Needs (2001). Functional limitation was categorized as severe, some, or no limitation. We performed analyses of the relationships of functional limitation to measures of health care needs and experiences.
RESULTS. Children with special health care needs with severe functional limitation were more likely to have received specialized educational services, to have had physician visits, and to have needed health services, compared with those with no limitation. They had significantly greater odds of delayed care, unmet health care and care-coordination needs, referral problems, dissatisfaction, and difficulty using health services, compared with those without limitation. Caregivers of children with special health care needs with severe limitation were twice as likely as those with no limitation to report that providers did not spend enough time, listen carefully, provide needed information, and make family members partners in the child's care. Compared with children with special health care needs without limitation, those with severe limitation had worse health insurance experiences, in terms of insurance coverage, copayments, being able to see needed providers, and problems with health insurance. The impact on families (financial problems, need to provide home care, or need to stop or to cut work) of children with special health care needs with severe functional limitation was much greater than the impact on families of children with special health care needs without limitation. For most measures examined, results for some limitation were between those for severe limitation and no limitation.
CONCLUSIONS. Functional limitation is significantly associated with the health care needs and experiences of children with special health care needs.
Children with special health care needs (CSHCN) constitute 14% to 22% of the pediatric population1–4 and account for more than two thirds of total health care expenditures for children.5,6 Having special health care needs adversely affects the physical, mental, financial, and social well-being of children and their families.1,4,6,7 One of the objectives of Healthy People 2010 is to increase the proportion of states that have service systems of care for all CSHCN (objective 16–23).8 Developing such systems of care for CSHCN requires a thorough understanding of health care needs and experiences (access to health care, health care provider interactions, adequacy of health insurance, and impact on families) among CSHCN.
It is well established that there are disparities in health care needs and experiences of CSHCN associated with race/ethnicity, poverty, lack of insurance, and parental education.9–13 Although several studies at the state and national level also reported disparities in health care associated with different levels of health status, condition severity, functional limitation, and functional ability of CSHCN,1,13–16 these factors were not the focus of many of the studies. Therefore, we undertook to explore whether having a functional limitation was associated with health care needs and experiences of CSHCN.
In this study, we defined functional limitation of CSHCN as the extent to which a child's condition affects his or her ability to do things other children of the same age do. Our objectives were to describe the health care needs of CSHCN on the basis of their functional limitation and to examine the association between functional limitation of CSHCN and their health care experiences in 4 domains, namely, access to health care, health care provider interactions, adequacy of health insurance, and impact on CSHCN and their families. The health care experience measures are described below.
This study was a secondary data analysis of cross-sectional data from the National Survey of Children with Special Health Care Needs (NSCSHCN).17 The NSCSHCN was sponsored by the Maternal and Child Health Bureau and the National Center for Health Statistics and was conducted between October 2000 and April 2002 in the United States. The survey used a random-digit-dial sample of households with children <18 years of age from each of the 50 states and the District of Columbia.17 All survey data are publicly available via the National Center for Health Statistics Web site.18
Respondents in this survey were parents or guardians who were most knowledgeable about the child's condition. The response rate was 61%. Survey weights were provided by the National Center for Health Statistics in the data set. The sample was weighted for nonresponse, telephone lines, and year 2000 Census characteristics. Children were identified as having special health care needs by using the CSHCN screener, which is a validated tool for identifying CSHCN.17,19 The screener has 5 stem items inquiring about a condition that has lasted or is expected to last ≥1 year and results in the need for medical and other services, special therapies, or prescription medicines, limitation of ability, or emotional, behavioral, or developmental issues requiring counseling.20
Functional Limitation Variable
Functional limitation of CSHCN was the independent variable of interest. The functional limitation variable was derived from 2 questions on the survey, as follows. (1) In the past 12 months, how often has the child's medical, behavioral, or other health conditions or emotional, developmental, or behavioral problems affected his or her ability to do things other children his or her age do (response options: never, sometimes, usually, or always)? (2) Does child's condition affect his or her ability to do things a great deal, some, or very little? The second question was asked only if the response to the first question was sometimes, usually, or always.
The functional limitation variable was categorized as severe, some, or no limitation. If the response to the first question above was never, then the child was considered to have no functional limitation. If the response to the first question was sometimes and the response to the second question was some or very little, then the child was considered to have some limitation. If the response to the first question was usually or always or the response to the second question was a great deal, then the child was considered to have severe limitation. This strategy for deriving the functional limitation variable was similar to that used in previous studies.1,13,14 We use functional limitation rather than functional limitations because the data did not have questions on the number or types of functional limitations.
Age, gender, mother's education, metropolitan status of residence, insurance type, household income level, and race/ethnicity were the sociodemographic variables used in the analysis. Age was categorized as <6 years, 6 through 11 years, or 12 through 17 years of age. Age was used as a continuous variable in multivariate analyses. Mother's education was categorized as high school or less versus more than high school education. Insurance had 4 categories, that is, uninsured or had gaps in insurance in the 12 months before the survey, public insurance (Medicaid, State Children's Health Insurance Program, Title V, or other public insurance), private insurance, and other (both public and private insurance and other insurance types). Household income was categorized as <100% of the federal poverty level (FPL), 100% to 199% of the FPL, 200% to 399% of the FPL, or ≥400% of the FPL. Race/ethnicity was categorized as Hispanic, non-Hispanic white, non-Hispanic black, or non-Hispanic other.
Health Care Needs
Needs for health care services (including specialized educational services) were compared for the 3 categories of functional limitation. For specialized educational services, receipt of either early intervention services (for children ≤24 months of age) or special education services (for children >24 months of age) was used. The proportions of CSHCN needing various health care services, namely, preventive, specialty, dental, mental health, or home health services, vision or hearing care, prescription medicines, therapy (occupational, speech, or physical therapy), mobility aids, medical supplies, or medical equipment, were calculated for the 3 categories of functional limitation. Substance abuse treatment and communication devices were excluded because the proportions of CSHCN reporting needs for those 2 services were <1% within the categories of functional limitation. The number of physician visits in the 12 months before the survey was categorized as <5 or ≥5 visits, because 5 was the median number of physician visits for the sample.
Health Care Experiences
Functional limitation categories were compared for 30 health care experience measures in 4 domains, namely, access to health care, health care provider interactions, adequacy of health insurance, and impact on child and family. All variables that had >2 response options were dichotomized so that all outcome variables had the same number of categories. Many variables had response options of always, usually, sometimes, or never and were categorized as always or usually versus sometimes or never. Unless specified otherwise, we used the same strategy as the Special Population Surveys Branch of the National Center for Health Statistics to categorize the response options.21
Access to health care measures included the usual source of both sick and well care, having a personal doctor or nurse, delayed or foregone care, unmet health care need for any 1 of the 14 services described above, problems obtaining referrals to specialists, unmet care-coordination needs, satisfaction with care (very satisfied versus somewhat satisfied or dissatisfied), and ease of use of services.
Health care provider interaction measures were based on questions that asked about providers' communication with other health providers (poor, fair, or good versus very good or excellent), communication with other programs (poor, fair, or good versus very good or excellent), time spent by providers, and whether providers listened carefully to concerns, were sensitive to the family's values, provided information about the child's condition, made family members feel like partners in the child's care, and discussed changing needs as adults.
Adequacy of health insurance measures were as follows: insurance benefits or covered services met the child's needs, costs not covered by health insurance were reasonable, insurance allowed the child to see the health care provider he or she needed, the respondent had called or written to the health care plan with a complaint or problem, rating of all experiences with the plan (0 = worst and 10 = best; 0–7 vs 8–10, because 8 was the median rating), the respondent reported that the family would switch to a different health care plan for the child if possible, and the respondent thought that the health care plan was good for CSHCN.
Seven categorical variables were used as measures of the impact on children and their families, as follows: the child missed school because of a health condition (>10 days/year versus ≤10 days/year), medical expenses for the child (more than $500 per year versus less than $500 per year), a family member stopped working to care for the child, a family member cut hours of work to care for the child, the family needed additional income to cover the medical expenses of the child, the child's health condition caused financial problems for the family, and family members provided health care at home.
We performed bivariate analyses to examine the relationship of functional limitation to sociodemographic characteristics and variables measuring health care needs and experiences. The Pearson χ2 test was used to examine the association between categorical variables. We then examined the relationship between functional limitation and dependent variables (health care needs and health care experiences) in multivariate analyses with sociodemographic variables as covariates. We tested separate logistic regression models with each one of the dependent variables in multivariate analyses. Age was used as a continuous variable. Dummy variables were created for variables with >2 categories. To obtain population-level estimates, appropriate survey weights were used in the analyses. A P value of <.05 was considered statistically significant. Stata Intercooled 8.2 (Stata, College Station, TX) was used for statistical analyses. The institutional review board of Wake Forest University Health Sciences approved the study.
Among the 38866 responders to the NSCSHCN, 38581 (99.3%) answered the 2 questions from which the functional limitation variable was derived. Weighted estimates of this sample showed that 40% of CSHCN had no limitation, 37% had some limitation, and 23% had severe functional limitation.
Functional Limitation and Sociodemographic Characteristics of CSHCN
The sociodemographic characteristics of the children in the 3 categories of functional limitation are compared in Table 1. There were slightly greater proportions of children ≥12 years of age in the some-limitation and severe-limitation categories than in the no-limitation category. There was a significantly greater proportion of boys in the severe-limitation group than in the other 2 groups. With increasing levels of functional limitation, smaller proportions of mothers had more than high school education. A slightly greater proportion of CSHCN in the no-limitation group lived in a metropolitan area, compared with the other 2 groups. Insurance status was associated with functional limitation; with higher levels of functional limitation, the proportions of CSHCN who had private insurance were smaller and the proportions of CSHCN with public insurance were larger. Among CSHCN with greater functional limitation, greater proportions lived in poverty and were of minority race/ethnicity.
Functional Limitation and Health Care Needs of CSHCN
In bivariate analyses, there were significant differences among the 3 functional limitation groups in their needs for all health care services examined, except for preventive care (Table 2). The proportions of CSHCN reporting needs for dental care in the no-limitation and some-limitation groups were similar and were greater than that in the severe-limitation group. Smaller proportions of CSHCN in the some-functional and severe-functional limitation categories reported needs for prescription medicine. The proportions of CSHCN reporting needs for all other health services were greater in the some-limitation group and greatest in the severe-limitation group. In multivariate analyses, the needs for preventive care and dental care did not differ among the 3 groups (Table 3). CSHCN with severe limitation were 7.5 times more likely and those with some limitation were 2.2 times more likely than those with no limitation to receive early intervention/special education services. The needs for specialty, mental health, and home health services, vision and hearing care, therapy (occupational, speech, or physical therapy), mobility aids, medical supplies, and medical equipment and receipt of physician visits were significantly greater for the severe-limitation group, compared with the no-limitation group. The needs of those in the some-limitation group were intermediate between those for the groups with no limitation and severe limitation. The only area in which this pattern was not found was in the need for prescription medicine, which was lower in the group with severe limitation than in the other 2 groups.
Functional Limitation and Health Care Experiences of CSHCN
Access to Health Care
In bivariate analyses, the proportions of children with a usual source of care and a personal doctor or nurse did not differ between the groups with no and some limitation and were slightly smaller in the severe-limitation group (Table 4). For the other 6 measures, increasing levels of functional limitation were associated with smaller proportions of access to health care. After adjustment for sociodemographic factors, the associations between functional limitation and usual source of care and having a personal doctor or nurse were no longer significant. The relationship between functional limitation and other measures of access to health care persisted in multivariate analyses; CSHCN with some limitation were more likely and those with severe limitation were much more likely to report delayed or foregone care, referral problems, unmet health care and care-coordination needs, dissatisfaction with services, and services not being easy to use (Table 5).
Health Care Provider Interactions
In bivariate analyses, except for provider communication with other programs and physicians discussing the changing needs of CSHCN as adults, the health care provider interaction measures differed significantly across the 3 functional limitation groups (Table 4). CSHCN with severe limitation were most likely and those with some limitation were least likely to report that provider communication with other providers was poor, fair, or good. For all other measures, the health care provider interaction was more likely to be rated poorly as the level of functional limitation increased. In multivariate analyses, the association between functional limitation and provider communication with other providers was not seen. Caregivers of CSHCN in the severe-limitation group were twice as likely as caregivers of CSHCN in the no-limitation group to report poor provider communication with other programs. There was a gradient seen with other provider interaction measures, such that CSHCN with severe limitation fared worst and those with some limitation fared worse than those with no limitation (Table 5).
Adequacy of Insurance
For all measures of adequacy of insurance examined, significantly larger proportions of CSHCN in the group with severe limitation had worse experiences, compared with the group with no limitation, and those in the some-limitation group were intermediate between the other 2 groups (Table 4). All of these associations of functional limitation with adequacy of insurance persisted in multivariate analyses (Table 5).
Impact on Child and Family
With greater functional limitation, CSHCN were more likely to have missed school and their families were more likely to have incurred high medical expenses, stopped or cut back on work, needed additional income, had financial problems, and provided medical care at home (Tables 4 and 5). These findings were consistent in both bivariate and multivariate analyses. The magnitudes of these associations were great; family members of CSHCN with severe limitation were 7 times more likely to report that they had to stop working and were 6 times more likely to report that they had to cut their hours of work to care for the child, compared with family members of CSHCN without limitation.
Results from our study show that the level of functional limitation of CSHCN is associated with disparities in their health care needs and health care experiences. For many of the outcome variables examined, a gradient was seen, in which higher levels of functional limitation were associated with greater health care needs and worse health care experiences.
Our study showed overrepresentation of boys, children of minority race, children with public insurance, and children living in households with low maternal education and poverty in the some-limitation and severe-limitation groups. These relationships of functional limitation with sociodemographic characteristics of CSHCN are similar to previous studies comparing children with disability with and without functional limitation from the National Health Interview Survey (1994–1995),16,22,23 although functional limitation was operationalized differently in those studies. Minority race/ethnicity, low maternal education, and poverty are important factors in access to health care. The overrepresentation of these vulnerable groups in the some-functional and severe-functional limitation categories could result from or contribute to their poor access to health care. Similar to previous studies, we observed smaller proportions of CSHCN with functional limitation with private insurance. It is possible that CSHCN with severe limitation are more likely to qualify for public insurance (eg, Medicaid) because of their greater health care needs. It also may be that they seek insurance other than private insurance either because the family does not qualify for private insurance because of job loss or because private insurance does not meet their health care needs adequately. The association between functional limitation and insurance status needs to be explored further. Although it is known that CSHCN are more likely to be insured than children without special needs,9,24 our observation that disproportionately greater proportions of CSHCN with functional limitation were uninsured or had gaps in insurance is concerning.
We observed higher rates of health care needs among CSHCN with greater levels of functional limitation, except for preventive care, dental care, and prescription medicine use. There is substantial evidence for greater utilization of health care services and expenditures for children with disability and special needs.5,24–26 Using the National Health Interview Survey, Weller et al27 noted higher rates of hospitalizations, emergency department visits, and use of therapy and care-coordination services for CSHCN with functional limitation, but there were no differences in physician visits or mental health services. The higher rates of physician visits and mental health visits noted in our study might have resulted from differences in the definitions used to identify CSHCN and to measure functional limitation in the 2 studies. Preventive care and dental care are routine services needed for all children. Therefore, it is not surprising that their rates were not different for the 3 functional limitation categories. CSHCN with severe limitation were less likely to report prescription medicine use, compared with the no-limitation group. This may be an artifact resulting from the questions used in the CSHCN screener. It is known that the prescription medicine question on the CSHCN screener is the single question used most frequently to identify CSHCN.20 Many such children do not have other consequences, such as limitation in ability or needs for medical services and special therapies.20 We found that 64%, 29%, and 5% of CSHCN with no, some, and severe limitation, respectively, were identified with the CSHCN screener on the basis of the item on prescription medicine use only and not the other 4 items. Therefore, CSHCN with needs for prescription medicine are overrepresented in the group with no limitation. Similar observations were made by Mulvihill et al.14
Rates of having a usual source of care and a personal doctor or nurse were similar among the 3 functional limitation categories when corrected for socioeconomic status. For these basic elements of access to health care, factors such as the presence of insurance, race/ethnicity, poverty, and mother's education are probably more important than functional limitation. However, functional limitation was an important factor for other aspects of access to care, such as delays in care, unmet needs for health services and care coordination, referral problems, satisfaction with care, and ease of use of services.
The American Academy of Pediatrics recommends that pediatricians provide family centered and coordinated care to all CSHCN.28,29 However, our study showed that rates of receipt of several elements of family centered care, such as time spent by physicians, listening to concerns, being sensitive to families, providing information, and making families feel like partners, were significantly lower for CSHCN with functional limitation, compared with those without functional limitation. It should be noted that communication with other health care providers and programs and discussing changing needs as adults were uniformly poor for all 3 categories of functional limitation. Effective strategies are necessary to identify CSHCN with functional limitation and to develop systems to decrease these gaps in provider interactions.
The presence of health insurance improves access to medical services for CSHCN and children without special health care needs12,25,30and decreases the financial burden on their families.31 However, our study suggests that, even in the presence of health insurance, there are gaps in services among CSHCN, especially for those with functional limitation. The absence of such protection could lead to worse access to health care among these children.
The impact on the families of CSHCN with functional limitation is considerable and is greatest for those with severe functional limitation. The greater need for health services may be a factor contributing to the greater impact on families of CSHCN with functional limitation. Programs for CSHCN should identify ways to decrease this impact. Future research should determine whether this could be accomplished by improving other health care experiences, such as access to services, adequacy of insurance, and provider interactions.
There are certain limitations to this study. We defined functional limitation in this study by using a specific set of questions. Although these questions have face validity, there are no data on the validity and reliability of the functional limitation measure used in this study. It is known that there are challenges in measuring functional limitation that are unique to children.27,32–34 For example, it is not clear how functional limitation changes with the age and development of the child. Assessment of a child's functional limitation also may vary according to respondent characteristics, such as the type of respondent (mother versus father) and the respondent's health status, overall child care experience, and experience with other children with special needs. Because the NSCSHCN did not collect information on specific medical conditions, we were unable to determine how functional limitation varied with different medical conditions. Next, the functional limitation measure was used among CSHCN identified with the CSHCN screener and may not yield similar results if a different sample is used. Finally, because this was a cross-sectional study, we were not able to determine the directionality of the associations we observed.
Understanding disparities in health care experiences among CSHCN is critical for developing high-quality service systems. Our data provide evidence for the strong association of functional limitation with the health care needs and experiences of CSHCN. We identified functional limitation of CSHCN as an important factor for disparities in their health care. Functional limitation should be considered in program planning for CSHCN. Population-based surveys on CSHCN should incorporate functional limitation as one of the variables in assessments of gaps in services for CSHCN. Future research should focus on measuring functional limitation in children, understanding the direction of the associations described in this study, and identifying the reasons for disparities associated with functional limitation. Finally, it should be determined whether addressing the needs of children with functional limitation could improve the health care experiences of CSHCN.
- Accepted September 17, 2007.
- Address correspondence to Savithri Nageswaran, MD, MPH, Department of Pediatrics, Wake Forest University School of Medicine, Medical Center Blvd, Winston-Salem, NC 27157. E-mail:
This work was presented in part at the 2006 Pediatric Academic Societies' Annual Meeting; April 29–May 2, 2006; San Francisco, CA.
The authors have indicated they have no financial relationships relevant to this article to disclose.
What's Known on This Subject
Race/ethnicity, poverty, and lack of insurance are factors known to be associated with disparities in health care for children with special health care needs. Recent reports suggest that functional limitation may be an additional factor in disparities among these children.
What This Study Adds
This study highlights functional limitation of children with special health care needs as an important factor for disparities in access to health care, health care provider interactions, adequacy of health insurance, and impact on families.
- Houtrow AJ, Kim SE, Chen AY, Newacheck PW. Preventive health care for children with and without special health care needs. Pediatrics.2007;119 (4). Available at: www.pediatrics.org/cgi/content/full/119/4/e821
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- ↵Chevarley FM. Utilization and Expenditures for Children With Special Health Care Needs. Rockville, MD: Agency for Healthcare Research and Quality; 2005. Agency for Healthcare Research and Quality Working Paper 05010. Available at: http://gold.ahrq.gov/pdf/51.pdf. Accessed March 12, 2008
- ↵Healthy People 2010. Maternal, infant, and child health. Available at: www.healthypeople.gov/Document/word/Volume2/16MICH.doc. Accessed November 21, 2004
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- Mayer ML, Skinner AC, Slifkin RT. Unmet need for routine and specialty care: data from the National Survey of Children with Special Health Care Needs. Pediatrics.2004;113 (2). Available at: www.pediatrics.org/cgi/content/full/113/2/e109
- ↵Newacheck PW, McManus M, Fox HB, Hung Y-Y, Halfon N. Access to health care for children with special health care needs. Pediatrics.2000;105 (4):760– 766
- ↵Mulvihill BA, Wingate MS, Altarac M, et al. The association of child condition severity with family functioning and relationship with health care providers among children and youth with special health care needs in Alabama. Matern Child Health J.2005;9 (suppl 2):S87– S97
- ↵Stein REK, Silver EJ. Are children with functional limitations representative of children with chronic conditions? Presented at the 37th Annual Meeting of the Ambulatory Pediatric Association; May 2–7, 1997; Washington, DC
- ↵Blumberg SJ, Olson L, Frankel M, et al. Design and operation of the National Survey of Children with Special Health Care Needs, 2001. Vital Health Stat 1.2003;(41):1– 136
- ↵National Center for Health Statistics. National Survey of Children with Special Health Care Needs, 2001. Available at: www.cdc.gov/nchs/about/major/slaits/nscshcn.htm. Accessed November 22, 2004
- ↵National Center for Health Statistics. Progress toward implementing community-based systems of services for children with special health care needs: summary tables from the National Survey of Children with Special Health Care Needs, 2001. Available at: www.cdc.gov/nchs/data/slaits/CSHCN%20Progress%20Tables1.pdf. Accessed March 12, 2008
- ↵Stein REK, Silver EJ. Conceptual issues: do functional limitations adequately capture chronic childhood morbidity? Presented at the American Public Health Association 126th Annual Meeting; November 15–19, 1998; Washington, DC
- ↵Newacheck PW, Strickland B, Shonkoff JP, et al. An epidemiologic profile of children with special health care needs. Pediatrics.1998;102 (1):117– 123
- ↵Newacheck PW, Inkelas M, Kim SE. Health services use and health care expenditures for children with disabilities. Pediatrics.2004;114 (1):79– 85
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- ↵American Academy of Pediatrics, Council on Children with Disabilities. Care coordination in the medical home: integrating health and related systems of care for children with special health care needs. Pediatrics.2005;116 (5):1238– 1244
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