Objective. To describe the proportion of youth with special health care needs (YSHCN) who are receiving services for medical transitions and to describe which sociodemographic and health care-related factors are associated with receiving transition services.
Methods. We analyzed responses to questions about medical transitions from the 2001 National Survey of Children With Special Health Care Needs (NS-CSHCN). Parents or guardians of youth aged 13 to 17 years who screened positive for the survey were asked (1) whether they had discussed with health care providers how their child's health care needs might change in adulthood, (2) if they had a plan to address these changing needs, and (3) if their child's health care providers had discussed having their child eventually see a doctor who treats adults. Bivariate and multivariate associations were estimated to identify sociodemographic and health care factors related to receiving medical-transition services.
Results. Overall, 50% of respondents had discussed their child's changing health care needs with their physicians, although significantly fewer Hispanic youth compared with other youth reported these discussions. Youth who met criteria for a medical home were more likely to have discussed changing needs and to have a plan addressing these needs. Of those who had discussed changing needs, 59% had a plan to address these needs and ∼42% had reported discussing shifting care to adult-oriented providers. Younger teens and non-Hispanic black children were less likely to have discussed changing providers. Fifteen percent of YSHCN met the Maternal and Child Health Bureau's core outcome for medical transitions. A multivariate logistic-regression model found that older age and having a medical home were significantly associated with increased odds of meeting the outcome measure.
Conclusion. The proportion of YSHCN meeting the medical-transition outcome measure is quite low, particularly for youth from ethnic minorities. Higher rates are seen for older teens and those receiving care within a medical home. Significant efforts will be required to meet the proposed goal of all YSHCN receiving the services necessary to transition to adult health care.
Over the last 20 years, researchers, government agencies, and health care providers have focused attention on improving health care and related services to children with special health care needs (CSHCN). According to the Maternal and Child Health Bureau (MCHB), CSHCN are those who “have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”1
This definition is based on the degree of health care utilization rather than disease classification and includes children with conditions of varying severity, those with and without developmental impairment, and those with and without activity limitations. This population is significant in terms of its size and relationship to the health care system. It includes >9 million children, or nearly 13% of US children.2 Children with chronic conditions account for a disproportionate share of health care expenditures.3,4 In addition, this population is vulnerable in terms of their dependence on uninterrupted medical care for their health and well-being. Thus, understanding gaps in access and quality of care to this population is especially important.
A newly recognized gap in the care for CSHCN has resulted from the changing epidemiology of this population. As a result of early detection, advances in medical treatment strategies, and improved health service systems, the vast majority of children with chronic conditions will survive into adulthood. Based on recent estimates, ∼500000 youth with special health care needs (YSHCN) will turn 18 each year.5 Consequently, there is a growing need to focus on the well-being and health care access of young adults with chronic childhood conditions.
Although many YSHCN may move smoothly into adulthood, others will face difficulties, especially in moving from child- to adult-focused health care providers. Some previously identified barriers in this health care-transition process include the lack of adequately trained adult-oriented physicians, the loss of insurance coverage, and family and provider reluctance to end a long-standing therapeutic relationship.6 Because the transition to adulthood represents a critical “turning point” in the life course, suboptimal transition experiences may affect the future ability of adults with chronic childhood conditions to optimize their quality of life.7 Transition planning has been suggested as a way to overcome barriers to a successful transition.8,9 In the medical context, transition planning is defined as the “purposeful, planned preparation of patients, families and caregivers for transfer of a patient from a pediatric to an adult care program.”8
In the late 1990s, adolescent transition was incorporated into a broad framework developed by the MCHB for facilitating systems of services for CSHCN and YSHCN. Transition planning and 5 other system indicators (family professional partnerships, access to a medical home, adequate insurance, early and continuous screening, and organization of service systems for ease of use) were ultimately incorporated as national Healthy People 2010 objectives to “increase the proportion of states and territories that have service systems for children with special health care needs.”9
In 2001 transition planning was incorporated into the president's “New Freedom Initiative” as part of a national plan to eliminate barriers and promote community integration for people with disabilities.10 As part of that effort, the MCHB was charged with developing and implementing a plan to achieve appropriate community-based systems for CSHCN and YSHCN. One component of that plan includes “ensuring that youth with special health care needs receive the services necessary to transition to all aspects of adulthood, including from pediatric to adult health care, from school to employment and to independence.”10
The National Survey of Children With Special Health Care Needs (NS-CSHCN), sponsored by the MCHB and conducted by the National Center for Health Statistics (NCHS), was designed to generate baseline rates for 5 of the 6 MCHB Healthy People 2010 goals, including transition planning. Although future versions of the survey may include questions for transition planning for key nonmedical areas, the 2001 NS-CSHCN focused primarily on planning for the medical aspects of transition. Accordingly, this report presents findings on the planning for medical-transition services currently received by adolescents with special health care needs. Although the overall percentages of youth meeting each performance measure have been summarized previously,2 here we describe in greater depth the current transition-planning practices of health care providers nationwide for YSHCN from the perspective of parents and guardians.
Details of the design and methodology for the NS-CSHCN have been described elsewhere.11 In brief, the survey used a random-digit-dial methodology and the State and Local Area Integrated Telephone Survey mechanism developed by the NCHS. A total of 373000 children in all 50 states and the District of Columbia were screened to identify a sample of 750 CSHCN in each state. A parent or legal guardian most knowledgeable about the child completed the screening questionnaire designed by a multidisciplinary task force under the auspices of the Foundation for Accountability to identify CSHCN.12 If the child met the screener criteria, the parent completed an additional battery of survey questions, including the transition questions when age appropriate. In total, the final sample included 38866 CSHCN who were 0 to 17 years. Questions about transition planning were asked only of parents of children aged ≥13 years, for whom planning for future adult needs could be expected to be most relevant. Because the transition questions were added to the survey after it was already in the field, only 5533 (40%) of the 13885 youth aged 13 to 17 years were asked about transition discussions.
The questionnaire was created by an expert panel convened by the MCHB and conducted by the NCHS between October 2000 and April 2003. The transition questions were added in July 2001. Trained interviewers administered the survey using a computer-assisted telephone interviewing system. The entire questionnaire took an average of 30 minutes to complete. The response rate for completion of the special-needs interviews was 61%.
Health care-transition planning was operationalized via 3 questions (Table 1). The first question, “Have your child's doctors or other health care providers talked with you or your child about how (his/her) health care needs might change when (he/she) becomes an adult?” was used as a branching question. Only parents who responded affirmatively to that question were asked 2 follow-up questions about having “a plan to address changing needs” and discussing “the shift to adult providers.”
Sociodemographic characteristics of the youth were examined, including age, gender, race/ethnicity (non-Hispanic white, non-Hispanic black, Hispanic, and non-Hispanic other), household poverty status (defined as percentage above or below the federal poverty level), and type of insurance (private only, public only, or none). To investigate differences in transition planning that might be seen with age, we compared younger teens (13–15 years) to 16- to 17-year-olds. The impact of special health care needs on daily activities was examined by parent/guardian responses to 2 questions about the frequency and intensity with which their child's condition affected his or her daily activities.
Finally, we included a measure of quality of medical care in our analysis: whether youth met criteria for having a medical home. The medical home concept has been promoted nationally by the American Academy of Pediatrics and other health care advocates as a mechanism for improving the delivery of care for all children. The medical home is “not a building, house, or hospital, but rather an approach to providing continuous and comprehensive primary pediatric care from infancy through young adulthood.”13 In this analysis, having a medical home was defined by using criteria established by the MCHB and operationalized by survey questions that were incorporated in the NS-CSHCN.14 To be counted as having a medical home, a child must have met 5 criteria: (1) has a usual source of care; (2) has a personal physician or nurse; (3) has no problem obtaining referrals when needed; (4) has received effective care coordination when needed; and (5) has received family-centered care. Family-centered care was defined by parents' reports of their relationship with their medical providers, including the sense of feeling like a partner in the care of their child, and their ability to get needed health information from providers. In previous analyses, it was shown that 52.6% of CSHCN had a medical home.14 Presence of a medical home was associated with higher satisfaction with care and fewer unmet health needs.14
We first calculated the proportion of parents/guardians responding positively to each question about health care transitions. We then combined these responses to calculate the percentage of youth meeting the transition services' core outcome measure. To be counted as meeting the transition core outcome, affirmative responses were required for all 3 questions. Second, we examined the bivariate relationships among the 7 sociodemographic variables and each transition question and the overall outcome measure. Finally, we performed a multivariate logistic-regression analysis to assess independent predictors associated with meeting the transition-performance measure.
All analyses were conducted by using STATA (Stata Corp, College Station, TX),15 a statistical analysis software program that adjusts for the complex sample design of the NS-CSHCN in calculating variance estimates and test statistics. Results presented here are weighted to reflect national population totals. The weights, provided by the data-collection agency, are equal to the inverse of each sample person's sampling probability, adjusted for nonresponse.
Although the overall prevalence of CSHCN was 12.8% nationally in 2001, among youth aged 13 to 17 years the prevalence was 15.6%. The subset of teens whose parents answered the transition-planning questions did not differ from the entire group of teens in the NS-CSHCN by any major sociodemographic characteristics (data not shown). The adolescents were 76.9% white, 56.5% male, and 14.9 years old on average, and 31.2% had a family income of >400% of the federal poverty level (Table 2). The impact of their chronic condition on the youths' activities varied: 40.7% reported that the condition “never affects” their activities, 36.8% were “sometimes affected,” and 22.5% reported that their child's condition “usually or always affects activities” or “affects activities a great deal.” In terms of insurance coverage, 78.7% of YSHCN were privately covered, 15.4% were publicly covered, and 5.9% had no insurance. Almost 50% of the YSHCN met all the criteria for having a medical home.14
Discussion of Changing Needs in Adulthood
Overall, 50% of respondents answered “yes” to the first question, reporting that they had discussed their child's changing health care needs in adulthood with their physicians (Table 3). This rate differed significantly by race/ethnicity with 31.6% of Hispanic respondents reporting discussion of changing needs versus 52.1% of non-Hispanic white, 49.9% of non-Hispanic black, and 45.7% of non-Hispanic other respondents (P = .0016 for the race/ethnicity category). All non-Hispanic respondents combined had a discussion rate of 51.5%, which was significantly greater than the 31.6% discussion rate of Hispanic respondents (P = .0001). Youth with a medical home were more likely to have discussed changing needs with their providers, compared with youth without a medical home (57.0% vs 44.0%; P = .000). Rates of discussion did not vary by age, gender, poverty status, level of condition impact, or insurance status.
Plan for Addressing Changing Needs
Of the 50% of respondents who reported discussing changing needs, 59.3% also reported having developed a plan with their child's physicians to address these changing needs (Table 3), which represents 29% of the total teen population surveyed. Of the 50% of youth who had discussed changing needs in adulthood, youth with a medical home were significantly more likely (63.5%) to have a plan, compared with those without a medical home (55.5%; P = .023). Rates of having a plan to address changing needs did not differ by age, gender, poverty status, disease impact, or type of insurance.
Doctors Discussed Shift to Adult Provider
Approximately 42% of those who reported having discussed changing needs also had discussed shifting their child's care to an adult provider (Table 3), which represents 21% of the YSHCN surveyed. Response patterns to this question differed significantly by race/ethnicity, with non-Hispanic black respondents having the lowest rates (38.1%), non-Hispanic white respondents having intermediate rates (40.6%), and Hispanic and non-Hispanic other respondents having the highest rates (56.4% and 58.8%, respectively) (P = .03 for the race/ethnicity category). Youth >16 years old were more likely to have discussed shifting to an adult provider, compared with younger teens (51.2% vs 36.3%; P = .000). There were no other significant differences in reported discussions of shifting to adult providers by any of the other sociodemographic or medical care variables studied.
Youth Meeting the Core Outcome Measure on Transition
Overall, 15.3% of youth met the MCHB core outcome measure of having received guidance and support in the transition to adulthood (Table 3). As noted earlier, to be counted as successfully meeting the performance measure, affirmative responses were required for all 3 health care-transition questions. The proportion of youth meeting this core outcome was significantly higher for older teens compared with younger teens; almost 19.5% of 16- to 17-year-olds met the transition criteria versus 12.9% of younger teens (P = .001). In addition, 20.1% of those with a medical home, versus 11.4% of youth without a medical home, met the medical-transition goal (P = .000). There were no differences in youth meeting the transition criteria by any of the other sociodemographic characteristics tested.
Results of the Multivariate Logistic-Regression Model
A multivariate logistic-regression model was estimated to assess the independent contribution of sociodemographic and medical care variables to success in meeting the medical-transition criteria. The model revealed 2 significant independent factors that predicted meeting the outcome measure (Table 4). Older teens were more likely to meet this goal compared with younger teens (adjusted odds ratio [OR]: 1.8; 95% confidence interval [CI]: 1.3–2.4). In addition, having a medical home increased the odds of meeting this goal more than twofold relative to youth without a medical home (adjusted OR: 2.1; 95% CI: 1.6–2.8).
This report presents results from the first national population-based survey of transition planning for YSHCN. Only 1 in 7 YSHCN received all the necessary components of medical transition specified in the MCHB's performance measure. This result points to the need for continued efforts in this area, because the transition goal had the lowest success rate of the 5 MCBH performance measures addressed in this survey. In comparison, the other 4 outcome measures (family-professional partnerships, adequacy of financing for health care, organization of community systems of care, and medical home) were met by 52% to 74% of families.2 We were concerned by the finding that youth more severely impacted by their condition were not any more likely to receive transition planning than youth with milder conditions. Youth with severe conditions are likely to be more reliant on the medical system for their well-being, and any interruption in the health care services they receive could be more harmful. Also, they may have a harder time finding adult-oriented health care providers willing to take on new patients with more complex needs.
Somewhat higher rates of transition planning were seen for older youth. Significantly more 16- to 17-year-olds than younger teens met the criteria for receiving guidance and support in transition, but still less than a quarter of the older teens met all 3 criteria. Higher success rates were expected, because older teens are approaching the age-related limits for many pediatric provider, hospital, and insurance programs and are likely to have a higher perceived need for transition planning. Pediatric providers often want to know the “right” age for transfer of care to adult providers. Ideally, the actual transfer of care to an adult provider would occur when the young person was physically, medically, and socially prepared for transition. Planning transitions to coincide with other life events such as graduation from high school or college or marriage may help to normalize and ease the transition process. Discussion about transition can begin early, although the actual transfer of care may not take place for many years.16 Expectations for the future are set, and skills are allowed to develop through these early conversations. There is agreement in the literature that specific transition planning should begin between the ages of 14 and 16 years.17,18
The association between having a medical home and receiving transition planning supports the underlying concept that children receive higher quality care within a medical home.13 Youth cared for in medical homes have more family-centered care by providers who know them well and are better able to anticipate their needs, including transition planning. In addition, the American Academy of Pediatrics Medical Home Initiative for Children With Special Needs includes transition planning as a component of their efforts.19
This study has a number of limitations. The questions about future adult needs and transition planning were added after the survey had already begun, so only 40% of all teens in the survey are represented in this analysis. However, the youth included in this subpopulation do not seem to differ from the larger population of youth in the survey in terms of sociodemographic or health care-utilization patterns (data not shown). Also, because of the relatively small sample size, we were unable to create reliable state-level estimates of transition planning. In this survey, we could not address the question of whether the lower rates of transition discussion for Hispanic youth are due to language barriers; the primary spoken language was unknown for the respondents, and very few Spanish-language surveys were conducted (∼2% of the total special-needs surveys overall).11
The design of the survey may have artificially lowered the percentage of participants meeting the transition core outcome. Some of the respondents may have reported transition plans or having discussed an adult provider, but they were not asked because they responded “no” to the first question about discussing changing needs.
In addition, parents or guardians were the respondents to the transition questions, as they were for the entire survey. It could be that our rates of transition planning are lower than they would be if the youth themselves were surveyed. However, given the typical involvement of the entire family in the health care of YSHCN, it is unlikely that significant future planning could occur without the active participation of parents and guardians.
In this first National Survey of CSHCN, the overall rates of transition planning are relatively low. Multiple factors contribute to this observation. First, recognition of the need for transition planning for YSHCN has come about comparatively recently. Second, there are multiple barriers at the health care-provider level that may be preventing this from being more widespread. Both providers (and families) may be reluctant to end a long-standing therapeutic relationship that has been established over the course of the child's life.6,20 Also, in many cases, appropriately trained adult-oriented providers are either not available or are unwilling to see young adults with chronic childhood conditions.20–22 Contributing to this problem may be the relatively high rates of uninsurance (and underinsurance) in the young-adult population.23 Third, national surveys have found that relatively few local or state agencies have established transition-related service programs.24,25
Finally, awareness of the need for future planning may be low among families and the youth themselves. Although most parents may worry about their child's future, it is difficult to plan for it while also struggling with pressing day-to-day needs. Generally improving systems of care for families will help to ease their daily burden and allow for more attention to future planning. Moreover, preliminary evidence suggests that the majority of youth and their families want transition assistance from health care providers.18,26
Despite the potential promise of transition planning for youth with chronic medical conditions, translation of this enthusiasm into a new standard of care has been slow. A number of efforts are under way to help improve transition-related services. Individual condition-based organizations have developed practice guidelines for the transition process.17,27–30 At the federal level, the MCHB and other agencies including the Social Security Administration and the Department of Education have sponsored a number of pilot projects across the country and are encouraging the development of innovative models of care.31 Title V CSHCN programs and other state agencies are also focusing attention on this topic. The 2002 consensus statement17 from the national organizations of pediatricians, internists, and family practitioners articulates the context and vision for planned, coordinated transitions for YSHCN; the future challenge is to implement and operationalize this vision. We will be able to assess progress made toward this goal with the next NS-CSHCN, due to begin in 2005. Achievement of improved transition processes will go a long way to promote independence and maximize health outcomes for YSHCN.
Support for Dr Lotstein was provided by the Robert Wood Johnson Clinical Scholars Program.
- Accepted September 27, 2004.
- Address correspondence to Debra S. Lotstein, MD, Department of Pediatrics, David Geffen School of Medicine at UCLA, 12-358 Marion Davies Children’s Center, 10833 Le Conte Ave, Los Angeles, CA 90095-1752. E-mail:
No conflict of interest declared.
- ↵McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics.1998;102 :137– 140
- ↵McPherson M, Weissman G, Strickland BB, van Dyck PC, Blumberg SJ, Newacheck PW. Implementing community-based systems of services for children and youths with special health care needs: how well are we doing? Pediatrics.2004;113(5 suppl) :1538– 1544
- ↵Newacheck PW, Inkelas M, Kim SE. Health services use and health care expenditures of children with disabilities. Pediatrics.2004;114 :79– 85
- ↵Center for Disease Control and Prevention, National Center for Health Statistics. State and Local Area Integrated Telephone Survey, National Survey of Children with Special Health Care Needs. Available at: www.cdc.gov/nchs/about/major/slaits/cshcn.htm. Accessed September 15, 2004
- ↵Reiss J, Gibson R. Health care transition: destinations unknown. Pediatrics.2002;110(6 pt 2) :1307– 1314
- ↵US Department of Health and Human Services, Maternal and Child Health Bureau. All Aboard the 2010 Express: A 10-Year Action Plan to Achieve Community-Based Services Systems for Children and Youth With Special Health Care Needs and Their Families. Washington, DC: Maternal and Child Health Bureau; 2001
- ↵US Department of Health and Human Services. Delivering on the promise: compilation of individual federal agency reports of actions to eliminate barriers and promote community integration. 2002. Available at: www.hhs.gov/newfreedom/final. Accessed September 15, 2004
- ↵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
- ↵American Academy of Pediatrics. Policy statement: the medical home. Pediatrics.2002;110 :184– 186
- ↵Strickland B, McPherson M, Weissman G, van Dyck P, Huang ZJ, Newacheck P. Access to the medical home: results of the National Survey of Children With Special Health Care Needs. Pediatrics.2004;113(5 suppl) :1485– 1492
- ↵Release Intercooled [computer program]. Version 8.2. College Station, TX: Stata Corporation; 2003
- ↵American Academy of Pediatrics, Academy of Family Physicians, American College of Physicians. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics.2002;110(6 pt 2) :1304– 1306
- ↵American Academy of Pediatrics. The National Center of Medical Home Initiatives for Children With Special Needs. Available at: www.medicalhomeinfo.org. Accessed September 17, 2004
- Scal P. Transition for youth with chronic conditions: primary care physicians' approaches. Pediatrics.2002;110(6 pt 2) :1315– 1321
- ↵Fishman E. Aging out of coverage: young adults with special health needs. Health Aff (Millwood).2001;20 :254– 266
- ↵Reiss J. State Title V CSHCN Programs, Health and Ready to Work (HRTW)/Transition Related Activities. Available at: http://cshcnleaders.ichp.edu/ILSCPTransitionNationalSurvey/FStateTransitionActivities.pdf. Accessed September 15, 2004
- Baldassano R, Ferry G, Griffiths A, Mack D, Markowitz J, Winter H. Transition of the patient with inflammatory bowel disease from pediatric to adult care: recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. J Pediatr Gastroenterol Nutr.2002;34 :245– 248
- ↵Cystic Fibrosis Foundation. Guidelines for the Implementation of Adult CF Programs. Bethesda, MD: Cystic Fibrosis Foundation; 1998
- ↵Healthy and Ready to Work National Program. Available at: www.hrtw.org. Accessed September 15, 2004
- Copyright © 2005 by the American Academy of Pediatrics