OBJECTIVES. Many youth with special health care needs have difficulties transferring to adult medical care. To address this, the Maternal and Child Health Bureau has made receipt of transition services a core performance outcome for community-based systems of care for youth with special health care needs. In this article we describe the results for the transition core outcome from the 2005–2006 National Survey of Children With Special Health Care Needs. We also describe changes in the measurement strategy for this outcome since the first National Survey of Children With Special Health Care Needs in 2001.
METHODS. In the nationally representative, cross-sectional 2005–2006 National Survey of Children With Special Health Care Needs, parent or guardian respondents of 18198 youth with special health care needs (aged 12–17) were asked if they have had discussions with their child's health care providers about (1) future adult providers, (2) future adult health care needs, (3) changes in health insurance, and (4) encouraging their child to take responsibility for his or her care. All 4 components had to be met for the youth to meet the overall transition core outcome. Those who had not had transition discussions reported if such discussions would have been helpful.
RESULTS. Overall, 41% of youth with special health care needs met the core performance outcome for transition. Forty-two percent had discussed shifting care to an adult provider, 62% discussed their child's adult health care needs, and 34% discussed upcoming changes in health insurance. Most (78%) respondents said that providers usually or always encourage their child to take responsibility for his or her health. Non-Hispanic black or Hispanic race/ethnicity, lower income level, not speaking English, and not having a medical home reduced the odds of meeting the transition core outcome.
CONCLUSIONS. Current performance on the transition core outcome leaves much room for improvement. Many parents feel that having transition-related discussions with their health care providers would be helpful. Future clinical and policy-level research should be directed at identifying barriers to, and recommending content for, health transition discussions.
With improved long-term survival and access to comprehensive services for youth with special health care needs (YSHCN), families, health care providers, and policy makers have realized that these youth often face difficulties once they age out of health-related services for children. Indeed, research on this transition to adulthood has found that many YSHCN have significant problems transferring to adult medical care and adjusting to adult life.1–5 Health transition services are believed to help smooth the process to avoid gaps in health care and maximize adult health-related quality of life. These services include transition preparation through discussions with physicians and other health care providers. Professional societies recommend that discussions to prepare youth for adulthood start during the early teenage years.6,7
Federal leadership on the health care aspects of transition to adulthood for YSHCN has come from the Maternal and Child Health Bureau (MCHB). Since 1935, the Title V program of the Social Security Act, now administered by the MCHB, has provided funding for specialized medical services for children with significant medical conditions. Over the years the program has evolved, moving from serving children with mainly orthopedic problems to those with a range of conditions and providing guidance to states on improving systems of care for children and YSHCN.8–10
More recently, the MCHB has made the preparation for adulthood 1 of 6 core performance outcomes, which together define a high-performing system of care for children with special health care needs (CSHCN).10 The transition outcome states: “Youth with special health care needs will receive the services necessary to make appropriate transitions to adult health care, work, and independence.” Mandated reporting on availability of transition services by state Title V agencies has encouraged programmatic activity in this area.
Two national surveys of CSHCN have been conducted to assess state and national progress toward meeting the MCHB's core performance outcomes from the perspective of families of CSHCN.10 Developed and funded by the MCHB, the first National Survey of Children With Special Health Care Needs (NS-CSHCN) was conducted by the Center for Disease Control's National Center for Health Statistics in 2001. Results are now available from the second NS-CSHCN conducted in 2005–2006.11
In this article we (1) describe changes to the measurement strategy for the transition core outcome since the 2001 survey and (2) report national results on the transition core outcome and its individual components by using the new 2005–2006 survey data. We also identify factors associated with meeting the core outcome and its components. Finally, we discuss implications of the results for federal and state planning and policy.
Changes in Conceptualization and Measurement of the Core Outcome on Transition
The conceptualization of the transition core outcome changed significantly between the 2001 and 2005–2006 surveys. These changes were spurred by feedback that the survey measures could more accurately capture the concept of transition preparation. In making these changes, the MCHB consulted the survey's technical expert panel as well as an ad hoc national advisory panel of individuals with content expertise in transition planning for YSCHN. The previous measurement strategy for the transition core outcome in the 2001 NS-CSHCN focused on assistance with both health care and educational/vocational planning for YSHCN aged 13 and older. The panels felt that although educational and vocational assistance is important, it may not apply to all YSHCN and, therefore, should not be included in the core outcome. Furthermore, given the importance of health insurance for lifelong access to health care, the panels felt that discussions about this topic should be addressed explicitly. The panels also recommended assessing whether parents who had not had transition discussions felt these conversations would have been helpful. A summarization of the changes to the transition core outcome is shown in the Appendix⇓.
The design and methodology used for the 2005–2006 NS-CSHCN have been described in detail elsewhere.12 Briefly, the NS-CSHCN, sponsored by the MCHB and conducted by the Centers for Disease Control and Prevention, is a list-assisted random-digit-dial telephone survey administered to a representative sample of households in each of the 50 states and the District of Columbia.
The parent or legal guardian who knew the most about the health and health care of the children in the household served as respondent for the interview. Parents completed the special-needs screener until a child with special needs was identified. The response rate for the completion of the special-needs interviews in the NS-CSHCN was 61.2%. A total of 40723 interviews with parents of CSHCN were completed during 2005–2006, including 18198 concerning youth between the ages of 12 and 17.
For the first time in the NS-CSHCN, a referent sample of children without special health care needs was surveyed for comparison. Parents or guardians of 1862 non-CSHCN aged 12 to 17 responded to the entire survey, including the transition measures.
The transition core outcome was calculated on the basis of the results of 4 component measures (Table 1). Three measures focused on parent report of transition-related discussions with their child's health care providers regarding (1) shifting to adult providers, (2) adult health care needs, and (3) health insurance. A respondent met the fourth component measure if he or she reported that the child's provider usually or always encourages the child to take responsibility for his or her care. Using the MCHB-determined criteria,11 all 4 components had to be met for the youth to meet the overall core outcome.
In the 2005–2006 NS-CSHCN, calculation of those meeting the component measures and the core outcome took into account parents' perceived need for transition discussions. For the first component measure (Table 1) it was assumed that needing to discuss a shift to adult providers would be limited to those whose provider sees only children, so this question was skipped if parents reported that any of their child's providers treat both adults and children. After each of the 3 transition discussion questions, parents who said they had not had such a discussion were asked if the discussion would have been helpful (Table 1).
Respondents met the core outcome if they reported that (1) they had had at least 1 of the 3 transition specified discussions or (2) they would not have found any of these discussions helpful and (3) their child was “usually” or “always” encouraged to take responsibility for his or her own care. Parents who reported that none of the 3 transition discussions would have been helpful were not considered in the calculation of the core outcome. Calculation of those who met the individual component measures differed from the calculation of the transition core outcome. For the component measures, parents who reported that a discussion would not have been helpful were not considered in the calculation for that component measure.
Eight sociodemographic and health-related variables previously associated with access to care were included in this analysis, including child's gender and age, race and ethnicity, poverty level, primary language spoken in the home, functional impact of the child's health condition(s), insurance coverage at the time of the interview, and presence of a medical home, defined by MCHB criteria.11
Descriptive statistics were calculated to identify the sample characteristics and the proportion of youth who met both the core transition outcome and the individual components of the overall outcome. The relationships between selected sociodemographic factors and each of the component and the core outcome measure were examined via χ2 tests of independence. Multivariate logistic regression was performed to identify independent predictors associated with not meeting the transition core outcome or each of the component measures.
Almost 60% of YSCHN were male, and half were older youth (15–17 years). Sixty-eight percent were non-Hispanic white, and the majority (96%) spoke English in the home. More than one third (36%) of the respondents reported that the youth's activities were never affected by his or her special health care need, whereas 39% were somewhat or moderately affected, and one quarter were affected always/usually or a great deal. Just less than half (45%) of YSHCN aged 12 to 17 met the MCHB criteria for having a medical home (Table 2).
Overall, 41% of YSHCN met the transition core outcome. The proportion of those who met each component item varied. Forty-two percent discussed shifting care to an adult provider, 62% discussed their child's adult health care needs with a provider, and 34% discussed upcoming changes in health insurance. The majority (78%) of respondents reported that their child's doctor or other health care provider usually or always encourages their child to take responsibility for his or her health (Table 3).
In bivariate analyses, factors associated with meeting the core transition outcome included female gender, non-Hispanic white race/ethnicity, speaking English in the home, having an income at ≥400% of the federal poverty level, having a special health care need that never impacts activities, having a medical home, and having insurance coverage. Factors associated with the 4 individual components were similar to those associated with the core outcome, with a few exceptions. Although age was not associated with the core outcome, older age was associated with discussing a shift to an adult provider, discussing changes in health insurance, and encouraging responsibility. Also, those without insurance were more likely than the insured to discuss shifting to an adult provider (55.8% vs 41.4%; P = .026) (Table 3), although insurance status was not associated with any of the other components or the overall core outcome.
Logistic regression was used to assess the independent factors associated with not meeting the core transition outcome and its 4 components (Table 4). Male gender was independently associated with increased odds of not meeting the core outcome (odds ratio [OR]: 1.22 [95% confidence interval (CI): 1.09–1.37]); male gender was also negatively associated with each of the component measures except for discussion of change in health insurance. Although age was not related to meeting the transition outcome in the unadjusted analysis, in the multivariate model older age was associated with higher odds of not meeting the transition outcome (OR: 1.15 [95% CI: 1.02–1.29]). Conversely, younger age was associated with increased odds of not discussing changes in providers or encouraging responsibility (Table 4).
Independent of other factors, respondents of non-Hispanic black or Hispanic race/ethnicity were more likely to not meet the transition core outcome compared with non-Hispanic white respondents (OR: 1.5 [95% CI: 1.23–1.82] and 1.43 [95% CI: 1.10–1.87], respectively). A similar association with race/ethnicity was significant in only 1 component measure: discussing changing health care needs.
Not speaking English in the home was associated with almost 2.5 times the odds of not meeting the transition core outcome. Those without a medical home had twice the odds of not meeting the transition core outcome or any of the 4 component measures. In an separate logistic regression model including only the most severely impacted youth, the only sociodemographic factors associated with not meeting the transition core outcome were not having a medical home and being uninsured (data not shown).
We performed additional analyses on respondents who reported not having 1 of the 3 transition discussions. More than half said that talking about future adult health care needs (51%) or discussing changes in health insurance (52%) would be helpful (data not shown). On the other hand, among those whose doctors treat only children, only 31% of those who had not discussed changing to adult providers said that such a discussion would be helpful. Factors associated with being more likely to find any of the discussions helpful were older age, nonwhite race/ethnicity, speaking a non-English language, daily activities moderately or usually affected, not having a medical home, and not having insurance coverage (data not shown).
Overall, the rates of meeting the transition core outcome did not significantly differ between YSHCN and the referent sample (Table 5). Rates of meeting the component measures were similar as well, with a slightly greater proportion in the referent sample reporting that they discussed health insurance changes and a greater proportion of YSHCN′s parents reporting that their child was usually/always encouraged to take responsibility (Table 5).
Current performance on the transition core outcome leaves much room for improvement. In the 2001 NS-CSCHN, 15% of YSHCN met the medically related elements of the transition core outcome.15 However, because of the changes in the measurement strategy described above, we cannot directly compare those results with the current findings. As in 2001, performance on the transition core outcome trails that of the other MCHB outcome measures.11 Moreover, there are significant disparities by race/ethnicity and socioeconomic status in those who met the outcome. Hispanic and non-Hispanic black respondents and YSHCN living in non–English-speaking and low-income households were all less likely to meet the transition core outcome. These are groups that previous research has identified as likely to have problems navigating complex health systems, and they are at high risk for having discontinuities in access to care.16 Thus, addressing these disparities in transition services is a high priority.
Another subgroup, those most impacted by their health conditions, was less likely to have transition discussions compared with less-affected youth. This is concerning, because youth with more significant medical conditions rely most heavily on ongoing access to medical services and, consequently, may be more negatively impacted by transition-related gaps in care.
We found that female respondents were more likely than male respondents to meet the transition core outcome. Given that the gender difference held true for all of the transition discussions except for changing insurance, this finding may reflect health care providers addressing the gynecological needs of their female patients. We cannot determine with our data whether these discussions are happening at the expense of addressing other ongoing health needs of female YSHCN.
Of the 4 component measures of the transition core outcome, discussions of health insurance occurred least frequently (34% met the component). This may be because most private insurers and some public programs cover children until the age of 21,17 and the oldest of the population surveyed was only 17 years old. However, Medicaid coverage for children ends at age 18, and unless youth maintain eligibility (eg, by qualifying for disability-related benefits), they will lose this public coverage on their 18th birthday. Thus, these discussions are timely for many of the 15- to 17-year-olds in the survey, yet this subgroup reported having insurance discussions only 36% of the time.
Why are these performance rates low? This rate of meeting the transition core outcome could be appropriate if most families did not need to have these discussions; however, we included only those who said that these discussions would have been helpful if they had not had them in calculating this rate. Rates of transition discussions may be low because health care providers are unsure of how to advise youth and their families on these issues, particularly regarding changes in insurance coverage. Also, providers may be reluctant to bring up issues that they feel they cannot resolve. Yet according to our findings, many parents, including those of non-CSHCN, feel that having transition-related discussions with their health care providers would be helpful. Future clinical and policy-level research should be directed at identifying and overcoming barriers to health transition discussions and at recommending more specific content for these discussions.
As a cross-sectional survey, the results of our analysis indicate correlations between sociodemographic factors and transition outcome, and as such, causation cannot be determined. Another limitation is that parent report could underestimate the true rate of discussions if health care providers are speaking directly with the youth and parents are unaware of the discussions. On the other hand, overestimation of those meeting the transition core outcome is possible if parents and guardians of YSHCN are not aware of their future needs regarding transition and, thus, report that having these discussions would not have been helpful. Empirically, we found that the parents who were most likely to say that these discussions would not have been helpful are the ones who would seem to least need extensive transition services, whether because of their relatively secure access to health care, likely ability to navigate health systems on their own, or their low risk of impact of health care interruptions (ie, those who are younger, at higher income levels, white, and less impacted by health condition [data not shown]). An additional limitation of our measurement approach is that we cannot capture the content of these transition discussions or the families' satisfaction with these conversations.
Efforts at improving transition services, although steadily building over the last 20 years, are only beginning to gain momentum. Perhaps the limited success in this area is caused by the gulf between 2 separate health care systems—1 for children and 1 for adults. By focusing on transition services as a core outcome, the MCHB and state Title V programs have recognized the importance of preparing for upcoming changes in adulthood and established a mechanism for accountability by which to stimulate action and monitor progress. Similar efforts and policy changes will be needed in the adult-oriented system to ensure that the “receiving end” is prepared for YSHCN, completing the handoff.
Solutions to improving the preparation for transition are needed at the patient and family, provider, and health system levels. Recent federal efforts have focused on increasing family awareness of the need for transition preparation and youth empowerment through the Center for Medicare and Medicaid Services Family-to-Family health information centers (now administered through the MCHB-initiated Family-to-Family health information and education centers).18 The Social Security Administration has also sponsored transition demonstration projects for youth with disabilities.19 At the clinical level, transition discussions and related activities must be integrated into clinical practices in a way that addresses the needs of youth and their families and is sustainable for clinicians. Public and private insurers should look at ways to improve access to care to prevent potentially costly gaps in health care with aging into adulthood.
Ultimately, an informed assessment of the impact of transition discussions requires understanding how these conversations are associated with improved transition to adult care and better adult health outcomes. Future research should be directed at assessing these outcomes.
- Accepted September 24, 2008.
- Address correspondence to Debra S. Lotstein, MD, MPH, Division of Child Health Policy, Center for Healthier Children, Families & Communities, David Geffen School of Medicine, University of California, 1100 Glendon Ave, Suite 850, Los Angeles, CA 90024. E-mail:
The authors have indicated they have no financial relationships relevant to this article to disclose.
What's Known on This Subject
Many YSHCN and their families face significant problems transferring to adult medical care. Transition preparation can help smoothen the process to avoid gaps in health care and maximize adult health-related quality of life.
What This Study Adds
We summarize changes to the measurement strategy for the MCHB's transition-preparation performance measure since the 2001 NS-CSHCN and present results from the 2005–2006 NS-CSHCN.
- ↵American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics.2002;110 (6 pt 2):1304– 1306
- McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics.1998;102 (1 pt 1):137– 139
- ↵US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children With Special Health Care Needs chartbook 2005–2006. Available at: http://mchb.hrsa.gov/cshcn05. Accessed April 26, 2008
- ↵Blumberg SJ, Welch EM, Chowdhury SR, et al. Design and operation of the National Survey of Children With Special Health Care Needs, 2005–2006. Available at: www.cdc.gov/nchs/data/slaits/NSCSHCN_0506_DO_112807.pdf. Accessed September 15, 2008
- ↵SAS Institute. SAS [computer program]. Release 9.1. Cary, NC: SAS Institute; 2002–;–2003
- ↵Research Triangle Institute. SUDAAN [computer program]. Release 9.0. Research Triangle Park, NC: Research Triangle Institute; 2004
- ↵Lotstein DS, McPherson M, Strickland B, Newacheck PW. Transition planning for youth with special health care needs: results from the National Survey of Children With Special Health Care Needs. Pediatrics.2005;115 (6):1562– 1568
- ↵Centers for Medicare and Medicaid Services. Family to Family health information and education centers. Available at: www.cms.hhs.gov/RealChoice/06_FamilytoFamily.asp. Accessed April 26, 2008
- ↵Social Security Administration. Youth transition demonstration. Available at: www.socialsecurity.gov/disabilityresearch/youth.htm. Accessed April 26, 2008
- Copyright © 2009 by the American Academy of Pediatrics