OBJECTIVE: To examine current US performance on transition from pediatric to adult health care and discuss strategies for improvement.
METHODS: The 2009–2010 National Survey of Children with Special Health Care Needs is a nationally representative sample with 17 114 parent respondents who have youth with special health care needs (YSHCN) ages 12 and 18. They are asked about transition to an adult provider, changing health care needs, increasing responsibility for health care needs, and maintaining insurance coverage. We analyzed the association of selected characteristics with successful transition preparation.
RESULTS: Overall, 40% of YSHCN meet the national transition core outcome. Several factors are associated with transition preparation, including female gender; younger age; white race; non-Hispanic ethnicity; income ≥400% of poverty; little or no impact of condition on activities; having a condition other than an emotional, behavioral, or developmental condition; having a medical home; and being privately insured.
CONCLUSIONS: Most YSHCN are not receiving needed transition preparation. Although most providers are encouraging YSHCN to assume responsibility for their own health, far fewer are discussing transfer to an adult provider and insurance continuity. Although changes in sample design limit trend analysis, there have been no discernible improvements since this transition outcome was measured in the 2005–2006 National Survey of Children with Special Health Care Needs. The 2011 release of the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians clinical recommendations on transition, new transition tools, and the spread of medical home should stimulate future improvements in transition performance.
- pediatric transition to adult care
- special health care needs
- children with disabilities
- primary health care
- patient-centered care
- ACA —
- Patient Protection and Affordable Care Act
- CI —
- confidence interval
- FPL —
- federal poverty level
- HRSA —
- Health Resources and Services Administration
- MCHB —
- Maternal and Child Health Bureau
- NS-CSHCN —
- National Survey of Children with Special Health Care Needs
- OR —
- odds ratio
- YSHCN —
- youth with special health care needs
What’s Known on This Subject:
The importance of transition from pediatric to adult health care for youth with special health care needs has gained increasing attention over the past decade, but fewer than half of this population received needed transition preparation in 2005–2006.
What This Study Adds:
This study reports on transition findings from the 2009–2010 National Survey of Children with Special Health Care Needs and finds no discernible improvements since 2005–2006. New clinical recommendations and care processes should help to accelerate transition improvements in the future.
The importance of transition planning has received increasing attention over the past several years. The Patient Protection and Affordable Care Act (ACA) recognized transition as an essential health home service.1 The National Committee on Quality Assurance, in its 2011 Patient-Centered Medical Home Standards, included a specific requirement to address care transitions for improving primary care.2 Also in 2011, the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians published a clinical report on practice-based implementation of transition for youth beginning in early adolescence.3 Most recently, Healthy People 2020 incorporated a new public health goal on transition planning from pediatric to adult health care.4
For more than a decade, the Department of Health and Human Services' Maternal and Child Health Bureau (MCHB) has articulated transition as 1 of 6 core performance outcomes necessary to create a comprehensive system of services for all children with special health care needs. This core outcome specifies that youth with special health care needs (YSHCN) should receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.5 To monitor national and state performance on transition and other core outcomes, beginning in 2001, MCHB has partnered every 4 to 5 years with the National Center for Health Statistics to conduct the National Survey of Children with Special Health Care Needs (NS-CSHCN).6,7
In this article, we report on the transition results from the 2009–2010 NS-CSHCN. We examine population, condition, and health care characteristics associated with successful transition preparation. Finally, we discuss strategies to overcome these obstacles.
The NS-CSHCN is designed and funded by MCHB and conducted by the Centers for Disease Control and Prevention’s National Center for Health Statistics. The questionnaire items in the 2009–2010 NS-CSHCN were the same as those used in the previous NS-CSHCN conducted in 2005–2006.8 Independent random samples of US households were identified through a random-digit dial telephone survey and subsequently screened to include parents or legal guardians with children <18 years of age. To identify parents/guardians who have a child with special health care needs, a 5-item screener was administered.9 For the first time, the 2009–2010 NS-CSHCN included an additional random-digit dial sample of cell phone users. A total of 17 114 interviews were completed for YSHCN between the ages of 12 and 18 years. Data were collected between July 7, 2009, and March 2, 2011.
The transition core outcome is a composite measure calculated by using responses to 4 component measures and their follow-up questions (Table 1). These measures examine whether the following topics have been discussed: (1) transition to an adult provider, (2) changing health care needs, (3) maintaining health insurance coverage, and (4) taking increased responsibility for self-care. The first component measure is asked only of respondents who report that their child sees a pediatrician for care. Three of the 4 component measures contain a follow-up question asked of respondents who reported that a discussion on the topic did not occur. This follow-up question assesses whether a discussion on this topic would have been helpful. To successfully meet the overall transition core outcome, the respondent must report that each of the first 3 discussions either took place or that a discussion on the topic would not have been helpful and that the child’s doctor “always” or “usually” encourages the child to take increased responsibility for his or her health care needs. For analysis of individual component measures, those who reported that a discussion would not have been helpful were not included in the results for that measure. Nine variables of interest were assessed for association with successful transition preparation: gender; age; household language; race/ethnicity; poverty; impact on activities; presence of an emotional, behavioral, or developmental condition; access to a medical home; and source of insurance coverage. These variables are consistent with those used in previous analyses of the survey.6,7
Descriptive statistics were calculated to examine the characteristics of YSHCN as well as the proportion meeting the transition core outcome and each component measure at the national level. To assess receipt of transition preparation independent of perceived need, we also analyzed the transition core outcome without the follow-up questions that asked whether the parent/guardian felt that transition services would have been helpful. All analyses incorporated the complex sample design, and multiply imputed data were used to examine poverty, race, and primary household language. The association between key sociodemographic factors and individual component measures and the transition core outcome was examined by using χ2 tests of independence. An adjusted logistic regression analysis was performed to identify factors associated with not meeting the transition outcome and each component measure. For the adjusted logistic regression analysis, the outcome was defined as not meeting the transition outcome to maintain consistency with the previous publication analyzing the 2005–2006 data set.7 All analyses were conducted by using Stata 12.0 (Stata Corp, College Station, TX).
An estimated 4.5 million or 18.4% of US youth ages 12 to 18 have a special health care need, a prevalence rate that is double that of young children ages 0 to 5.10 Health and health care characteristics that distinguish YSHCN pertain to their type of chronic condition, level of disability, access to a medical home, and source of insurance coverage. More than a third of YSHCN have an emotional, behavioral, or developmental condition, and more than a quarter experience a persistent and significant impact on activities as a result of their condition. Fewer than half of YSHCN receive care that can be described as a medical home.11 The vast majority of YSHCN are insured: more than half with private insurance, about a third with public insurance, and the remainder with both public and private coverage (Table 2).
Overall, 40% of YSHCN meet the national transition outcome (Table 3). The proportion of YSHCN meeting individual component measures differs substantially: 44% discuss switching to an adult provider with their health care provider, 59% discuss changing health care needs, 78% discuss taking increased responsibility for self-care, and 35% discuss maintaining health insurance coverage. When the follow-up questions about whether a discussion on a particular topic would have been helpful were excluded, only 21% of respondents report that their child had a discussion about transition to an adult provider, 44% report that their child had a discussion about changing health care needs, and 23% report that their child had a discussion about maintaining insurance (data not shown). These findings indicate a much smaller proportion of respondents who report that a discussion took place regardless of whether they felt it would have been helpful.
Several sociodemographic factors are associated with meeting the core transition outcome: female gender, non-Hispanic white race, speaking English in the home, and having a family income ≥400% of the federal poverty level (FPL). In addition, certain health and health care characteristics positively affect transition preparation. These include having a special health care need with no impact on activities; having a condition other than an emotional, behavioral, or developmental condition; receiving care within a medical home; and having insurance coverage. Although there are no significant differences among younger and older adolescents in terms of meeting the overall transition outcome, age differences were observed for all 4 component measures. Parents of older adolescents (ages 15–18) compared with those of their younger peers are more apt to report having specific transition discussions with their health care provider.
The demographic, health, and health care factors associated with not meeting the transition core outcome and its 4 component measures were identified by using an adjusted logistic regression model, as seen in Table 4. Male gender is associated with a higher likelihood of not meeting the transition outcome (odds ratio [OR]: 1.35, 95% confidence interval (CI): 1.19–1.53) and component measures. Older age (15–18 years) is associated with a higher likelihood of not meeting the transition outcome (OR: 1.15, 95% CI: 1.02–1.31), but a lower likelihood of not meeting the component measures. This is most likely due to the difference in calculation method for the core outcome, which counts those who report not needing a given service as meeting the outcome and its component measures, which exclude these individuals from the calculation. Because parents of younger adolescents are less likely to report that transition services are needed, they thus appear to perform better on the transition outcome. Non-Hispanic black race and Hispanic ethnicity were both associated with a higher likelihood of not meeting the transition outcome (OR: 1.51, 95% CI: 1.23 – 1.84, and OR: 1.56, 95% CI: 1.17–2.10, respectively). No significant association is observed between speaking a language other than English in the home and meeting the transition outcome or component measures. Household income between 100% and 400% FPL is associated with a higher likelihood of not meeting the transition outcome (OR: 1.28, 95% CI: 1.03–1.58 for 100% to 199% FPL and OR: 1.18, 95% CI: 1.01–1.38 for 200% to 399% FPL).
YSHCN whose activities are significantly affected by their condition have a higher likelihood of not meeting the transition outcome (OR: 1.90, 95% CI: 1.59–2.26) and a higher likelihood of not being usually or always encouraged to take greater responsibility for care. Having an emotional, behavioral, or developmental condition, or lacking a medical home, are also associated with a higher likelihood of not meeting the transition outcome (OR: 1.40, 95% CI: 1.21–1.61, and OR: 2.13, 95% CI: 1.88–2.41, respectively) and component measures. In addition, those without insurance or with public insurance have a higher likelihood of not meeting the transition outcome (OR: 2.33, 95% CI: 1.46–3.74, and OR: 1.75, 95% CI: 1.42–2.16, respectively) and component measures.
This study demonstrates that most YSHCN are not receiving needed preparation from their health care providers about transition from pediatric to adult health care. Although most health care providers are encouraging YSHCN to assume greater responsibility for their own health care, far fewer are discussing transfer to an adult health care provider and health insurance continuity. Although the change in sample design (inclusion of cell phone sample households) limits our ability to comment with certainty on trends, there have been no discernible improvements since this national transition outcome was last measured in the 2005–2006 NS-CSHCN. Moreover, similar disparities persist by gender, race/ethnicity, socioeconomic and insurance status, household language, type of condition, extent of impact on activities, and availability of a medical home.7
Despite numerous efforts to educate consumers and providers about health care transition since 2005–2006, it appears that they were important but not sufficient to influence widespread improvements in transition preparation. More focused attention to adolescent subgroups whose transition performance lags behind will likely produce future improvements, including males; blacks and Hispanics; those with lower incomes; those with disabilities; those with mental, behavioral, or developmental conditions; those not in a medical home; and those lacking insurance coverage. Results from our study also indicate that many parents do not perceive that transition needs to be addressed until late in adolescence, which clearly impedes transition preparation. Consequently, expanded efforts are needed to educate parents and other caregivers about the significance of transition along with practical steps they can take to support their youth in self-care management and to partner with health care providers in identifying adult medical home and specialty providers.
It is also evident from our analysis that national transition performance is based on the sum of many distinct and interrelated steps and not the result of any 1 specific intervention. That is, although increasing the percentage of youth who take responsibility for their care is critically important, also necessary is expressly addressing transfer to adult-focused care. In 2011, a clear protocol for transition preparation within a medical home model was published, which addresses the necessary steps for transition.3 Since that time, the federally funded National Health Care Transition Center has expanded the availability of clinical tools and processes to implement these professional recommendations.12 Health care transition learning collaboratives, with pediatric, family medicine, and internal medicine sites in the District of Columbia, Boston, Denver, and New Hampshire, are currently piloting primary care quality approaches to health care transition.13 These sites are implementing core elements of the transition preparation process consistent with new professional recommendations, including the use of (1) a written transition policy, (2) a registry for identification and tracking of patients, (3) planning tools (transition readiness assessment, portable medical summary, and transition action plan), and (4) timely and organized transfer to adult health care providers. Early evaluation from these transition learning collaboratives suggests substantial improvement.14 The spread of quality improvement efforts among pediatric and adult physicians will likely gain momentum with these available resources and with additional training of pediatric and adult providers, including increasing the capability of the adult system of care to address the needs of individuals with childhood-onset conditions.
Clearly, payment incentives for both pediatric and adult practices will help to accelerate the adoption of clinical recommendations on transition. This includes recognizing the added time and resources associated with implementing the core elements of transition. Although efforts are under way by the Centers for Medicare and Medicaid Services to finance transition services for Medicare beneficiaries moving from hospital to community-based care, comparable program and payment efforts have not been initiated for transfer from pediatric to adult health care settings. New investment in transition payment reform, consistent with the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians joint transition statement, is needed by public and private payers. Certainly health insurance coverage expansions for older adolescents and young adults under the ACA will positively influence future transition outcomes as well.
It is evident from our analysis that having a medical home substantially increases the odds of having transition discussions. Further improvements in transition preparation will be more likely if the transition process is incorporated into the medical home model of care with its team-based coordinated care, updated clinical summaries, emphasis on self-care management, comprehensive assessments, care management support, organized adult referral networks, and mechanisms to proactively manage transfers and monitor success.2 As new standards and health information technology for the patient-centered medical home are developed and updated, the core elements of successful transition from pediatric to adult health care should be incorporated.
Our analysis is limited by several factors. The cross-sectional study design of the NS-CSHCN allows us to examine only correlation and not causation between the transition core outcome and key factors of interest. Information from the NS-CSHCN is reported by parents rather than by youth, which may over- or underestimate the actual extent to which transition discussions took place. The transition core outcome is reflective only of the extent to which parents report that transition discussions took place when needed. Further, the survey does not query parents about other factors that could affect transition preparation, including the parent-child relationship, health care provider characteristics, or access to self-care programs or other transition support services.
Our findings suggest that a much more concerted focus is needed to achieve progress in transition from pediatric to adult health care for YSHCN, prioritizing those least likely to receive transition support. Such efforts should be carefully integrated within the medical home model of care, payment reforms, insurance expansions, and health information technology implementation.
We gratefully acknowledge the assistance of Paul Newacheck from the University of California, San Francisco’s Philip R. Lee Institute for Health Policy Studies for critically reviewing the article, Scott Stumbo from the Child and Adolescent Health Measurement Initiative at Oregon Health and Science University for helping us access and convert the NS-CSHCN data into a usable format, and Jessica Jones from the Maternal and Child Health Bureau for comparing data estimates.
- Accepted March 6, 2013.
- Address correspondence to Margaret McManus, MHS, The National Alliance to Advance Adolescent Health, 750 17th St, NW, Ste 1100, Washington DC 20006. E-mail:
Ms McManus conceptualized and interpreted the data analysis, and drafted the background, discussion, and conclusion sections for the initial manuscript; Ms Pollack carried out all of the data analyses, and drafted the methods and results section for the initial manuscript; Dr Cooley and Ms McAllister participated in the development of the discussion section and critically reviewed the initial manuscript; Dr Lotstein assisted in the conceptualization and interpretation of the data analysis and the examination of trends, and critically reviewed the initial manuscript; Drs Strickland and Mann assisted in the development of the background and discussion sections and critically reviewed the manuscript; and all authors approved the final manuscript as submitted.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: Supported by the National Health Care Transition Center through the cooperative agreement U39MC18176 HRSA/MCHB.
- ↵Patient Protection and Affordable Care Act, Pub L No. 111-148, §2702, 2010; 124 Stat 119:318–319.
- National Committee on Quality Assurance
- Cooley WC,
- Sagerman PJ,
- American Academy of Pediatrics,
- American Academy of Family Physicians,
- American College of Physicians,
- Transitions Clinical Report Authoring Group
- ↵Healthy People 2020 Summary of Objectives. Available at: www.healthypeople.gov/2020/topicsobjectives2020/pdfs/disability.pdf. Accessed June 4, 2012.
- ↵The National Survey of Children with Special Health Care Needs Chartbook 2005–2006: Core outcomes. Available at: www.mchb.hrsa.gov/cshcn05/MI/cokmp.pdf. Accessed June 4, 2012.
- Lotstein DS,
- McPherson M,
- Strickland B,
- Newacheck PW
- Lotstein DS,
- Ghandour R,
- Cash A,
- McGuire E,
- Strickland B,
- Newacheck P
- ↵Data Resource Center for Child and Adolescent Health. Demographics and CSHCN prevalence for all children ages 0-17. Available at: www.childhealthdata.org/browse/survey/results?q=1792&r=1. Accessed December 30, 2012.
- ↵Data Resource Center for Child and Adolescent Health. Outcome #2: coordinated, ongoing, comprehensive care within a medical home. Available at: http://childhealthdata.org/docs/cshcn/outcome-2.pdf?Status=Master. Accessed March 15, 2012.
- ↵Health care transition resources. Available at: www.gottransition.org/. Accessed April 20, 2012.
- ↵White P. Destination known: making health care transition happen for youth with special health care needs. Presented at the DC Department of Health; April 29, 2011; Washington, DC.
- Copyright © 2013 by the American Academy of Pediatrics