OBJECTIVE: To examine whether individual, condition-related, and system-related characteristics are associated with state performance (high, medium, low) on the provision of transition services to children with special health care needs (CSHCN).
METHODS: We conducted descriptive, bivariate, and multivariable analyses of 16876 children aged 12 to 17 years by using data from the 2005–2006 National Survey of Children With Special Health Care Needs. Polytomous logistic regression was used to compare the characteristics of CSHCN residing within high-, medium-, and low-performance states, with low-performance states serving as the reference group.
RESULTS: Compared with non-Hispanic white CSHCN, Hispanic (adjusted odds ratio [aOR]: 0.25 [95% confidence interval (CI): 0.17–0.37]) and non-Hispanic black (aOR: 0.44 [95% CI: 0.30–0.62]) CSHCN were less likely to reside in a high-performance than in a low-performance state. Compared with CSHCN who had a medical home or adequate insurance coverage, CSHCN who did not have a medical home or adequate insurance coverage were less likely to reside in a high-performance than in a low-performance state (aOR: 0.73 [95% CI: 0.57–0.95]; aOR: 0.73 [95% CI: 0.58–0.93], respectively).
CONCLUSIONS: Key factors found to be important in a state's performance on provision of transition services to CSHCN were race/ethnicity and having a medical home and adequate insurance coverage. Efforts to support the Maternal and Child Health Bureau's integration of system-level factors in quality-improvement activities, particularly establishing a medical home and attaining and maintaining adequate insurance, are likely to help states improve their performance on provision of transition services.
- children with special health care needs
- Maternal and Health Child Bureau
- 2005–2006 National Survey of Children With Special Health Care Needs
- transition to adulthood
- Title V
- Healthy People 2010
Transition services are defined as the “purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.”1 Nearly 90% of children with special health care needs (CSHCN) now survive to adulthood.1–4 Although many CSHCN make a smooth transition from pediatric to adult health care,5 most CSHCN have ongoing health needs and higher lifetime medical expenditures compared with other children, which makes transition services critical for ensuring the continued receipt of medically and developmentally appropriate health care.6–12 In addition, CSHCN with more severe medical conditions or who require more intensive services often face different challenges in their transition to adult health care, partly because of the nature of and costs associated with the services required.13–16
In recognition of the importance of transition services, the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration added “receipt of the services necessary to make transitions to all aspects of adult life” as 1 of 6 system indicators to measure state and national progress toward implementing community-based systems of services for CSHCN.17 The 2005–2006 National Survey of Children With Special Health Care Needs (NS-CSHCN) was developed to provide state and national prevalence estimates for assessing progress toward federal and state objectives and to inform state Title V needs assessments.18 Given the priority placed on transition services, providers and policy makers need current information to better understand the factors associated with the receipt of transition services and progress made toward achieving system indicators and Healthy People 2010 goals to improve service systems for CSHCN.18
Numerous researchers have reported that individual, condition-related, and system-related factors influence access to health care and transition services for CSHCN.7,19–32 Lotstein et al19 reported that failure to obtain transition services may lead to gaps in insurance coverage and delayed care for low-income youth who have aged out of Title V CSHCN services. In this article, we examine whether and to what extent individual, condition-related, and system-related characteristics are associated with state performance in the provision of transition services to CSHCN.
We conducted an analysis of cross-sectional data from the NS-CSHCN by using a subpopulation of children aged 12 to 17 years (N = 16876). We explored whether state performance on the provision of transition services (high, medium, low) was associated with individual demographic and family characteristics (ie, child's age, race/ethnicity, family structure, household education level, family income), condition-related factors, and the 5 MCHB-defined system indicators described below.
The state performance outcome variable was developed in a multistep process.33 First, 5 questions from the household interview were used to determine if a child had received transition services: he or she must have indicated that his or her doctors have either discussed transitioning to doctors who treat adults, changing health needs as a youth becomes an adult, and/or how to maintain health insurance coverage on reaching adulthood or that such discussions were not needed; and indicated that his or her doctors usually or always encourage him or her to take age-appropriate responsibility for managing his or her own health care needs.34 Next, the percentage of CSHCN in each state who received transition services was tabulated, and each state was compared with the national average of 41.2% for provision of transition services. High-performance states (Missouri, Nebraska, Minnesota, Vermont, New Hampshire, North Dakota, South Dakota, Kansas, Maine, Ohio, Iowa, and Washington) were those in which the proportion of CSHCN who received transition services was significantly higher (range: 47.3%–54.4%) than the national average. Medium-performance states (Colorado, Wyoming, Massachusetts, Montana, Pennsylvania, Idaho, Wisconsin, Illinois, Oklahoma, Oregon, Connecticut, Kentucky, Utah, Delaware, Alaska, Nevada, West Virginia, Indiana, Louisiana, Michigan, North Carolina, Tennessee, Arizona, Hawaii, New York, Alabama, New Jersey, Virginia, Rhode Island, Maryland, South Carolina, California, Texas, and Georgia) were those in which the percentage was not significantly different (range: 37.5%–47.0%) from the national average. Low-performance states (Florida, New Mexico, Arkansas, Mississippi, and District of Columbia) were those in which the percentage was significantly lower (range: 24.0%–33.8%) than the national average.17,33
With the exception of age, which was maintained as a continuous variable, the categorical explanatory variables were classified or reclassified as follows. Race and ethnicity were reclassified into a single variable: Hispanic; non-Hispanic black; and non-Hispanic white. CSHCN of other racial/ethnic origins were excluded from this analysis because of the small sample size. Household education (highest level of education received by a parent) was classified into 3 levels: less than high school; high school; and more than high school. Family household structure was classified into 2-parent households with 2 biological or adoptive parents; 2-parent households with 1 step-parent; 1-parent households (mother only, no father figure); and all other family household compositions.35 Family poverty level was based on the imputed variable for family incomes: 0% to 99% of the federal poverty level (FPL); 100% to 199% of the FPL; 200% to 399% of the FPL; and ≥400% of the FPL.36 Residence was classified as specified in the NS-CSHCN: metropolitan statistical areas (MSAs); non-MSAs; and areas in which the population was <500000.35
CSHCN screener questions were used to characterize both type and intensity of need (prescription medications only, services only, prescription medications and services, and functional limitations) among the children.37 To assess the frequency with which “medical, behavioral, or other health conditions/emotional, developmental, or behavioral problems” affected children, we evaluated number of days missed from school, impact of conditions/problems on a child's ability to do things (a great deal, some, or very little), and impact of conditions/problems on a child's ability to do things that other children of the same age do (usually/always versus sometimes/never).35
The system-related variables that reflect the performance of state health systems on MCHB-defined system indicators and/or selected subcomponents thereof included (1) families of CSHCN are decision-making partners in all levels of care and are satisfied with their care, (2) CSHCN receive coordinated care in a medical home, (3) families of CSHCN have adequate insurance coverage, (4) children are screened early and continuously for special health needs; and (5) community-based services are organized so that families can use them easily. These system-related variables are based on parental responses to 1 or more NS-CSHCN questions and were classified as dichotomous variables.35
We estimated the prevalence and 95% confidence intervals (CIs) of CSHCN reported to have received transition services (ie, the child received 4 types of anticipatory guidance and was usually or always encouraged to take responsibility for his or her own health care) according to each of the explanatory variables.
In bivariate analyses, crude odds ratios (ORs) and 95% CIs were estimated to examine associations between the explanatory variables and state performance on transition services. Confounding was assessed by comparing crude ORs to adjusted odds ratios (aORs). Variables that exhibited a difference of 10% or more between crude ORs and aORs were deemed as potential confounders and retained in modeling.
We used a multilevel modeling model framework38 to account for the clustered sampling design (ie, children sampled within states), obtain correct estimated SEs for clustered data, and investigate whether ORs for state performance and the explanatory variables varied across clusters (ie, states). In the first analytic step, we used MLwiN39 and methods by Korn40 and Carle41 to subset the data and scale the weights, respectively. No variance across clusters was observed; therefore, polytomous logistic regression models42 were constructed to examine associations between high, medium, and low state performance on the receipt of transition services and individual, condition-related, and system-related characteristics. Low-performance states served as the referent group. We created and recoded variables by using SAS 9.1.3 (SAS Institute, Inc, Cary, NC). Analyses were conducted by using SAS-callable SUDAAN 9 (Research Triangle Institute, Research Triangle Park, NC) to appropriately weight estimates and adjust for the complex sampling design.43 We followed a stepwise backward elimination strategy to eliminate variables from starting models containing all main effects and 2-way interaction terms. We used P values of >.1 as the elimination criterion and P values of ≤.05 as the threshold for statistical significance. Potential confounders (race/ethnicity, household education level, family household structure, and family poverty level) were retained in final adjusted models. We did not adjust for multiple comparisons.
The proportion of CSHCN encouraged to take responsibility for their health care needs (73.3%) was approximately double that of those who received anticipatory guidance (38%) or who received the services necessary to make transitions to all aspects of adult life (transition services) (41%) (see Table 1). Having a medical home and feeling satisfied with the care received were more frequently reported health system characteristics among those who reported receiving transition services and its subcomponents. Demographic and other characteristics associated with receipt of transition services and its subcomponents included CSHCN who were non-Hispanic white; household education levels greater than high school; household structures with 2 parents; and household incomes of >400% FPL (all statistically significant at P ≤ .05). The proportion of CSHCN who needed only prescription medications or who had conditions with low impact on a their abilities was greater than other condition-related characteristics in relation to receipt of transition services and its subcomponents.
Table 2 lists the distribution of CSHCN according to individual, condition-related, and system-related characteristics residing in high- (n = 4244), medium- (n = 10 989), and low- (n = 1643) performance states.
Table 3 lists the crude and adjusted factors associated with state performance for receipt of transition services. Compared with non-Hispanic white CSHCN, Hispanic (aOR: 0.25 [95% CI: 0.17–0.37]) and non-Hispanic black (aOR: 0.44 [95% CI: 0.30–0.62]) CSHCN were less likely to reside in a high-performance state than in a low-performance state. Compared with CSHCN who had a medical home or adequate insurance coverage, CSHCN who did not have a medical home or adequate insurance coverage were less likely to reside in a high-performance than in a low-performance state (aOR: 0.73 [95% CI: 0.57–0.95]; aOR 0.73 [95% CI: 0.58–0.93], respectively).
Compared with non-Hispanic white CSHCN, Hispanic CSHCN were also less likely to reside in a medium-performance than in a low-performance state (aOR: 0.67 [95% CI: 0.50–0.90]). Compared with those who lived in a household with 2-parent biological/adoptive families, CSHCN who lived in 2-parent step-families were less likely to reside in a medium-performance than in a low-performance state (aOR: 0.64 [95% CI: 0.48–0.87]). In addition, CSHCN who did not have a medical home (aOR: 0.82 [95% CI: 0.65–1.04]) or adequate insurance (aOR: 0.83 [95% CI: 0.67–1.03]) were less likely to reside in a medium-performance than in a low-performance state; however, these results were not statistically significant.
Although we analyzed all 2-way interaction terms in the modeling process, only one 2-way interaction term (household education level × medical home) had a P value of <.1 (data not shown).
Receipt of services necessary to make transitions to all aspects of adult life is 1 of 6 important system indicators that mark successful state and national systems of care for CSHCN. Using NS-CSHCN data, we examined individual, condition-related, and system-related characteristics to determine if these characteristics can explain state performance in the provision of transition services. After controlling for individual, condition-related, and system-related characteristics, we found that several factors were associated with high state performance on provision of transition services: race/ethnicity; medical home; and insurance coverage. Race/ethnicity and family household structure seemed to be important characteristics of medium-performance states. More careful analysis needs to be conducted to determine if a true interaction exists between household education and establishing a medical home and how this finding should be interpreted. In addition, further analyses should take into account and adjust for multiple comparisons. A better understanding of the factors identified in this analysis and their association with the receipt of effective transition services can inform policy and program changes or development aimed at achieving transition-related service-system improvements within all states.
Our findings, that families of racial/ethnic minority CSHCN, lacking a medical home, and inadequate insurance coverage are associated with lower state performance, conform to usual patterns.19,30 These findings may indicate that underlying inequities in income, the distribution of wealth, health care access, and institutional racism are applicable to the systems of care for CSHCN as for children without special health care needs. This type of finding is not unique but has not been explored in depth among CSHCN.44 CSHCN providers may need to consider offering additional or different types of services, recognizing that some families have fewer resources and may be less sure or less aggressive in negotiating complex and confusing systems of care. Health care providers must intensify efforts to establish meaningful, culturally competent partnerships with the families of CSHCN. Without meaningful provider and family partnerships, we can expect indicators of success to remain unacceptably low, even among the states that have shown better performance.
The significant associations of 2 system-related characteristics (CSHCN receive coordinated care in a medical home and CSHCN have adequate insurance coverage) with receipt of transition services supports the long-standing concept that a service system comprises elements that necessarily, by definition, interact and influence each other. For example, a true medical home would involve families in decision-making, monitor their satisfaction, and perform early childhood screening.45 Similarly, uninsured families are unlikely to have a medical home, be satisfied with services, or experience ease in organizing needed services.
Because the study data are cross-sectional, it is not possible to determine a causal relationship between receipt of transition services and the factors that influence such services. The study is based on parental self-reports and may be influenced by recall bias and response bias. Although the sample size was adjusted for families without telephones, the sample may be biased in that families with telephones may not accurately reflect the experience of families without telephones or those with cellular telephones only.46,47 However, although cellular telephones are increasingly more common, households with young children tend to retain land lines.35
In addition, although the study sample was limited to CSHCN between the ages of 12 and 17 years, parental reports about the receipt of transition services could be influenced by the child's age. Although all CSHCN should receive age- and stage-appropriate messages and information about transition services from their care providers on a regular basis, parents of CSHCN may have differential recall of this information. For example, parents of a younger child might not recall the messages and information to the same extent as the parents of an older child.
Finally, we used a composite variable in place of numerous variables that make up transition services and its subcomponents. Although a composite variable provides a quick assessment of whether children within a state meet a specific parameter, a composite variable may “mask” information that would be useful in guiding program and policy development.
The results of this study have implications for both policy and practice. At the federal level, efforts that support the integration of the 6 system indicators in quality-improvement activities (particularly establishing a medical home and attaining or maintaining adequate insurance) are appropriate in light of this analysis and should continue. At the practice level, Healthy and Ready to Work (www.hrtw.org) is a national resource center through which Title V agencies and their stakeholders can share “promising practices in interagency collaboration, medical home, transition/youth, and family partnerships.” This analysis also reinforces the roles and responsibilities traditionally fulfilled by state Title V CSHCN programs that relate to transition services. These programs are charged with (1) ensuring that families of CSHCN are decision-making partners in all levels of care and are satisfied with the care received, (2) providing coordinated care in a medical home, (3) ensuring that families of CSHCN have adequate insurance coverage, (4) ensuring that children are screened early and continuously for special health needs, and (5) organizing community-based services so that families can use them easily.
The ultimate goal, for CSHCN to receive necessary services for successful transition, will be achieved through partnered efforts of clinicians and families. To move toward the provision of transition services as the standard of care within a practice, providers should consider using checklists and time lines, such as the one developed by the Institute for Community Inclusion at Children's Hospital Boston,48 to organize and implement developmentally appropriate transition planning for CSHCN. Providers also may want to consider (1) alternative scheduling for well-child visits for CSHCN to minimize time away from work for low-income and single-parent families and (2) developing partnerships with school-based staff, such as school nurses and special education teachers who are working on similar issues with CSHCN with functional limitations, to avoid duplication, identify gaps, and coordinate efforts. Clinicians also may want to consider developing a practice-based parent advisory group to facilitate the exchange of information on topics such as insurance and accessing appropriate health care services for young adults with special health care needs.
This study reaffirms the complexity and difficulty of planning and performing effective systems-related quality improvement for transition services. Many factors influence the current experiences of CSHCN and their families. Meaningful system improvement becomes more likely with data that provide a foundational knowledge of the family experience and that help explain and guide policy recommendations and program development.
- Accepted August 3, 2009.
- Address correspondence to Debra J. Kane, PhD, Iowa Department of Public Health, Bureau of Family Health, 321 E 12th St, 5th Floor, Des Moines, IA 50319-0075. E-mail:
Financial Disclosure: The authors have indicated they have no financial relationships relevant to this article to disclose.
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