OBJECTIVE: The goal of this study was to examine factors associated with receiving health care transition counseling services as reported by young adults.
METHODS: We analyzed data from the 2007 Survey of Adult Transition and Health, a nationwide survey of young adults aged 19 to 23 years conducted by the National Center for Health Statistics, to explore self-reported receipt of services to support transition from pediatric to adult health care. Multivariate logistic regression was used to identify whether sociodemographic characteristics, health status, or markers of provider-youth health communication were associated with the receipt of 3 key transition counseling services.
RESULTS: Among the 1865 Survey of Adult Transition and Health respondents, 55% reported that their physicians or other health care providers had discussed how their needs would change with age, 53% reported that their physicians or other health care providers had discussed how to obtain health insurance as an adult, and 62% reported having participated in a transition plan in school. Only 24% reported receiving all 3 transition counseling services. In multivariate logistic regression analyses, although gender, age, and race were not associated with increased receipt of the transition-related outcomes, markers of strong communication with the health system were associated with increased rates of receiving transition guidance.
CONCLUSIONS: Many young adults reported not having received health care transition counseling. Provider-youth communication was associated with increased health care transition guidance, and suggests that a medical home model that promotes anticipatory guidance for health care transition could promote improvements in the transition process.
WHAT'S KNOWN ON THIS SUBJECT:
Successful transition from pediatric to adult-centered health care requires structured counseling for youth from their health care providers.
WHAT THIS STUDY ADDS:
In a national survey of young adults, we found that many do not report receiving anticipatory guidance regarding transition to adult care. Improved communication with health care providers is associated with receipt of more guidance regarding health care transition.
Over the past several decades, many more youth with special health care needs (YSHCN) are surviving well into adulthood.1,2 As a result, services to support health care transition (HCT) to adult-oriented health care are increasingly critical.3,4 Individual, disease-specific, health system, and health insurance–related factors may facilitate or impede provision of adequate services to youth before and during HCT. This transition should start in early adolescence and involves individualized planning and ongoing skills development.5 However, for many youth, HCT is disorganized because of many different factors, including lack of transition counseling by pediatric providers, developmental challenges of the youth themselves, lack of social supports, poor communication and coordination of care between pediatric and adult health care systems, and gaps in insurance at the age of transition.3 Youth may be precipitously discharged out of pediatric care without appropriate follow-up5,6 or they may transfer from pediatric-centered health systems without the skills and knowledge needed to succeed in an adult-oriented system.
Receipt of anticipatory guidance regarding transition has been linked to improved health outcomes. For example, counseling led to improved adherence with appointments for young people with juvenile idiopathic arthritis7 and improved adherence and disease control in young adults with diabetes.8,–,10 A composite of 4 aspects of anticipatory guidance to support HCT is used as 1 of the 6 Maternal and Child Health Bureau system-wide quality indicators for community-based services geared toward YSHCN.11 Previous research from the National Survey of Children with Special Health Care Needs (NS-CSHCN) revealed that only a minority of parents of YSHCN report having discussed transition with their adolescent's physician12 and only 30% had a plan for addressing transition needs.13 In a subanalysis of the NS-CSHCN restricted to those aged 12 to 17 years, less than half had received transition guidance by their pediatric health providers.14 Taken together, these data suggest that many YSHCN, regardless of disease severity, are not receiving anticipatory guidance to support transition to adult care from their pediatric health care providers. In additional, from a health system perspective, an analysis of the 2005 NS-CSHCN revealed that the presence of a medical home and provision of adequate health insurance predicted an individual state's performance (high, medium, or low) on the Maternal and Child Health Bureau transition services quality metric.14 This finding suggests that a focus on health coverage and development of medical home models could improve provision of HCT services. Failure to receive such services has been associated with delays in health care and lack of future health coverage.15
In this study, we examined the receipt of transition-related anticipatory guidance by 1865 youth and young adults, aged 19 to 23 years, participating in the 2007 Survey of Adult Health and Transition (SATH), a 6-year follow-up survey of the 14- to 17-year-old children who had participated in the 2001 NS-CSHCN. This survey is the first of young adults to assess their self-reported experience during the period of expected transition to adult-centered care. On the basis of previous work highlighting disparities in accessing the medical home based on sociodemographic characteristics,16 we were particularly interested in examining the hypothesis that sociodemographic factors—particularly race/ethnicity, insurance status, and health status—would be associated with receipt of HCT counseling. In addition, because communication with health care providers is a key component of a high-quality medical home,17 we examined the association between the quality of communication with health care providers and receipt of transition services among the SATH cohort, hypothesizing that youth rating their providers higher on communication would also report higher rates of receiving guidance regarding HCT.
The 2007 SATH was conducted by the National Center for Health Statistics to explore self-reported transition processes and outcomes for young adults. SATH was a nationwide telephone survey of young adults aged 19 to 23 years whose parents were interviewed when the youth were 14 to 17 years old in the 2001 NS-CSHCN. Researchers identified 10 933 cases that were eligible for follow-up, and the resulting SATH data set includes 1865 of the 1916 interviews completed with the young adults.18 The primary reason for the low response rate (17.5%) was the inability to contact the potential respondents. The cooperation rate once contacted was very high (97%). The strengths and weaknesses of the survey as well as the methods are discussed at www.cdc.gov/nchs/slaits/sath.htm.
Primary Outcome Measures: Receipt of Transition Counseling
The SATH contained 3 distinct questions assessing a respondent's receipt of anticipatory guidance or counseling regarding health care transition: (1) “Have your doctors or other health care providers talked with you about how your health care needs might change as you got older?”; (2) “Eligibility for health insurance often changes as children reach adulthood. Has anyone discussed with you how to obtain or keep some type of health insurance coverage?”; and (3) “Did you ever meet with adults at school or somewhere else to set goals for what you would do after high school and make a plan for how to achieve them? Sometimes this is called a transition plan.” Binary responses to each of these 3 questions, which we refer to as Transition Counseling Outcomes 1 (Discuss Change in Needs), 2 (Discuss Health Insurance), and 3 (Make a Plan), respectively, served as the primary outcomes for our analyses.
Young Adult and Family-Level Variables
We included sociodemographic variables from the SATH data set, including age, gender, and race/ethnicity. Income was reported by the young adult and categorized in 4 levels: <200% federal poverty level, 200% to 400% of federal poverty level, >400% of the federal poverty level, or “don't know/refused.” To measure educational attainment, we included data on whether the young adult reported having received a high school diploma and whether he or she received special education services. We included health insurance status as reported by the young adult dichotomized into “continuous insurance” if they were insured all of the previous 12 months or “no insurance or a gap in insurance in the past 12 months” if they had ≥1 months with no insurance during the past 12 months. Data on maternal education, dichotomized into high school diploma or less, and any post–high school education, was obtained through linking the SATH data with the parental responses from the 2001 NS-CSHCN.
Health Status and Medical Home Variables
The health status variables used in the analysis were obtained from the 2007 SATH questions. Respondents were asked to rate their general health, which we categorized as excellent, very good, good, and fair–poor. We included dichotomous indicators to the responses for the following questions: “A person with special health care needs is someone who needs special health care services because of a medical, mental health, or other health condition. People with special health care needs might need medicine, therapy, or specialty care on a regular basis—stuff other people don't typically need or only need once in a while. Do you consider yourself to have a special health care need?” We defined a respondent as having an “activity limitation” if they answered yes to any of 3 questions assessing limitations due to health concerns. Current assessment of health status was based on the response to a question asking respondents to rate their health status in the 2007 survey compared with their reported health in 2001 and was categorized into “better” or “worse or about the same.”
The key components of a medical home include a usual place of comprehensive care, an accessible place of care, care coordination, and patient-centered care.19,20 In the 2001 NS-CSHCN, individual components of the medical home were assessed and reported as a composite medical home variable.21 In the data set, the composite medical home variable was constructed by combining responses to several questions. For some questions, skip patterns were built into the survey design such that the number of observations for each of the individual characteristics of the medical home varied. Because of the skip patterns, therefore, many SATH respondents had missing data for the composite medical home variable, precluding our use of this particular variable in our analysis. Instead, we identified 2 key aspects of the medical home as key predictors in our analysis. We included dichotomous indicators of whether the young adult reported having a personal physician or nurse as a marker of a usual place of care, and we analyzed questions related to communication as markers of accessible and family-centered care.
Health Communication Variables
In the SATH survey, the following 5 questions related to communication during the past 12 months with health care providers were asked: (1) “How often did your doctors and other health care providers spend enough time with you?”; (2) “How often did your doctors and other health care providers listen carefully to you?”; (3) “How often did your doctors or other health care providers help you feel like a partner in your care?”; (4) “How often did you get the specific information you needed from your doctors and other health care providers”; and (5) “How often are your doctors and other health care providers sensitive to your values and customs?” Responses to these questions were initially categorized as always, usually, sometimes, or never and were dichotomized in our analyses to “always” versus “other.”
Descriptive statistics were used to summarize the sociodemographic, health status, and health communication characteristics reported with the SATH cohort. Bivariate analyses for identifying potential associations were conducted for all covariates of interest with the 3 transition services outcomes. Correlation coefficients were assessed for all covariates. No covariates had a sufficiently high (>0.7) correlation to be a threat for collinearity in the multivariate analyses. A separate stepwise backward elimination multivariate logistic regression model was run for each of the 3 transition counseling outcomes. Each logistic regression model included the sociodemographic variables, health status indicators, and health communication covariates. The multivariate regression analyses were conducted using the PROC LOGISTIC backward stepwise selection modeling technique to identify significant factors associated with each of the 3 outcomes. All analyses were conducted in SAS 9.2 (SAS Institute, Inc, Cary, NC).
Characteristics of the SATH Cohort
The SATH cohort was predominantly white (90%), and a high percentage of respondents had high school diplomas (91%) (Table 1). A majority of respondents (65%) reported their health as excellent or very good, and only 31% reported having a current special health care need (SHCN) (Table 2). Most respondents (73%) reported having a personal physician or nurse. Respondents' assessments of different aspects of health care communication from their providers were generally positive, with 42% to 62% of respondents answering “always” to the specific communication processes assessed in the survey (Table 2).
Reported Receipt of Transition Counseling
Fig 1 displays the percentage of respondents who positively reported receiving any of the specific transition counseling assessed in SATH: 87% reported receiving counseling in at least 1 of the 3 transition topics, 55% reported that their physicians or other health care providers had discussed how their needs might change with age (Discuss Change in Needs), 53% reported that their physicians or other health care providers had discussed how to keep or obtain health insurance as an adult (Discuss Health Insurance), and 62% reported having a plan for what to do after high school (Make a Plan). Thirty-four percent reported receiving the 2 health-related transition counseling outcomes, and only a minority of respondents (24%) reported receiving all 3 transition counseling outcomes assessed in the survey.
Factors Associated With Reporting Health Care Transition Counseling
In the multivariate analysis for Transition Counseling Outcome 1 (Discuss Change in Needs) (adjusted R2: 11.7%), respondents with mothers with lower educational attainment were more likely to report that a physician or other health care providers had discussed how health care needs might change with age (odds ratio [OR]: 1.4 [95% confidence interval (CI): 1.1–1.8]) (Table 3). Those reporting a SHCN (OR: 1.5 [95% CI: 1.2–1.8]) were more likely and those with a health status that was worse or the same compared with 2001 were less likely (OR: 0.7 [95% CI: 0.6–0.9]) to report having had discussions on changing health care needs. Having a personal physician or nurse was associated with increased odds of discussing how needs might change with age (OR: 1.8 [95% CI: 1.4–2.3]). Three of the 5 measures of communication were associated with Transition Counseling Outcome 1 (Discuss Change in Needs): reporting that physicians always listened carefully (OR: 1.7 [95% CI: 1.4–2.2]), reporting that physicians always helped them feel like a partner (OR: 1.4 [95% CI: 1.1–1.7]), and always receiving enough information from their physician regarding medical problems (OR: 1.4 [95% CI: 1.1–1.7]). Race, gender, income, and respondent education were not associated with this outcome.
In the multivariate analysis for Transition Counseling Outcome 2 (Discuss Health Insurance) (adjusted R2: 3.8%), only 2 sociodemographic variables were significantly associated with this outcome (Table 4): those with lower income were less likely (OR: 0.7 [95% CI: 0.6–0.96]) and those receiving special education were more likely (OR: 1.5 [95% CI: 1.2–1.9]) to have received counseling on future health insurance needs. No measures of health status were significant in the multivariate analysis. Two measures of health care communication were associated with increased odds of receiving counseling related to health insurance: reporting that physicians always helped them feel like a partner (OR: 1.4 [95% CI: 1.1–1.8]) and always receiving enough information from their physician regarding medical problems (OR: 1.3 [95% CI: 1.02–1.6]).
The sociodemographic characteristics associated with Transition Counseling Outcome 3 (Make a Plan) (adjusted R2: 5.6%), were race, education, and insurance status (Table 5). In addition, lower maternal and youth educational achievement were both associated with a lower likelihood of the youth having a transition plan in school. Among the health status variables, reporting a SHCN was associated with higher odds of having developed a transition plan in school (OR: 1.3 [95% CI: 1.0–1.6]). Two of the 5 measures of health care communication were associated with this outcome in the multivariate analyses: reporting that their physicians always spent enough time with them (OR: 1.3 [95% CI: 1.03–1.6]) and reporting that their physicians always listened carefully (OR: 1.3 [95% CI: 1.04–1.6]).
In this study, we analyzed data from the national SATH to assess factors associated with receipt of counseling and anticipatory guidance regarding preparing youth for HCT. Overall, just more than one-half of respondents reported receiving some counseling regarding HCT, and markers of good communication with health providers were consistently associated with increased likelihood of reported counseling regarding HCT.
The SATH respondents generally reported good health, and interestingly, only a minority reported having a current SHCN, despite the fact that these were individuals who were screened as meeting criteria for a CSHCN in 2001 when their parents were enrolled in the NS-CSHCN. At the same time, these youth seemed quite connected to the health care system, with 73% reporting that they could identify a personal physician or nurse. However, only a minority of respondents reported having received all 3 transition counseling services. These results echo results of previous national surveys that revealed similar low rates of receipt of transition guidance as reported by parents of children aged 14 to 17 years.2,14 The SATH survey obtains data regarding self-reported receipt of transition services by youth aged 19 to 23 years, who by that age should have received such guidance. The similar rates of receipt of transition services reported in the SATH and the NS-CSHCN demonstrate that pediatric health providers are not consistently offering transition-focused anticipatory guidance. Consistent with our findings, a recent survey of pediatricians also found that less than half of pediatricians provide assistance with referrals to adult primary care or specialty care for their adolescent patients with SHCN.22 A 2002 Consensus Statement issued by the American Academy of Pediatrics, American Academy of Family Physicians, and the American College of Physicians stated as a goal that by 2010 “all physicians who provide primary or subspecialty care to young people with special health care needs [to] (1) understand the rationale for transition from child-oriented to adult-oriented health care; (2) have the knowledge and skills to facilitate that process; and (3) know if, how, and when transfer of care is indicated.”3 Future work is needed to help develop structured programs and tools for pediatric providers to provide transition guidance.
Very few sociodemographic or health status indicators were associated with either of the 2 health system–specific transition services outcomes. Race was not associated with either outcome, although this finding could be a function of the population sampled. Lower maternal educational attainment was associated with higher reported rates of discussing how needs would change with age, which could reflect a youth's earlier engagement in their health care with a parent of lower education. Importantly, youth who self-identified as having a SHCN were more likely to report having had such discussions with their physicians, which is encouraging in that transition services and future planning are more critical in YSHCN.
The key indicators associated with higher odds of receiving transition services were related to provider-patient health care communication, including reporting that physicians always listened, provided adequate information, or partnered with the young adult. Because communication is a key component of a high-quality medical home,17 these findings lend further support to the concept of a medical home in which comprehensive, coordinated, ongoing health care is provided to youth experiencing a health care transition.3 An important finding of our study is that 27% of the young adults in the SATH reported no personal physician or nurse, higher than those reported by parents of adolescents before transition to adulthood.23 Youth who did not report having a personal physician or nurse were less likely to report having had discussions about changing needs with age, suggesting that a relationship with a medical provider leads to increased engagement in the transition planning process. These results echo the findings from the 2005–2006 NS-CSHCN that youth with a usual source of care were more likely to receive counseling on their future needs.24 Better communication with health care providers was also associated with higher odds of reporting a school-based transition plan. Taken together, our findings underscore the importance of family-centered care in the medical home; specifically the individual relationship between an adolescent or young adult and his or her health care team, as a key factor promoting education, trust, and transition planning.3,24,25
Our analysis has several limitations. We could not assess the association between specific health conditions not captured in the survey and HCT services. However, the survey did have a number of measures of health status, including self-reported disability, special health care needs, and health status rating. An additional limitation is the relatively homogeneous nature of the SATH cohort. Because of the difficulty in finding youth who had participated in the 2001 NS-CSHCN, the response rate was low and the final cohort is not representative of the general US population. An analysis of the response bias by the National Center for Health Statistics staff concluded that youth who were more affluent and those with continuous health insurance were more likely to be located and those who were black, poor, and less educated were less likely to be located (personal communication, Kathleen O'Connor, MPH, written communication, National Center for Health Statistics, October 21, 2010). The difficulty in finding youth who are undergoing transition to adulthood underscores the many changes that occur at this time and which may undermine health care services. Given the skewed SATH sample, we may not have detected important differences in transition counseling services or other outcomes related to health status, socioeconomic status, and demographic factors. The results, therefore, may not be generalizable across race/ethnicity, geographic location, health status, or socioeconomic strata. In addition, our results may not be applicable to the health care transition experience of youth with specific chronic diseases that disproportionately affect minority populations (eg, sickle cell disease). We conjecture that the receipt of transition services might be even lower among such young adults who were not included in the SATH cohort. However, despite these limitations, the SATH is the first national sample that has attempted to survey young adults with SHCN to assess their self-reported experience during the period of expected transition to adult-centered care. We encourage future study of young adults with SHCN and in broader populations to evaluate their HCT experience and outcomes. Finally, although the transition counseling outcomes assessed in the SATH survey represent 3 key processes in health care transition, they do not completely capture the complexities of the HCT process from both a developmental and medical perspective. Future work is needed to refine and improve both process and outcome measures for the assessment of HCT, particularly in higher-risk populations.
We report on the first national survey of young adults to assess their experiences of receiving counseling regarding HCT. Communication and engagement with the health care system were more strongly linked to receiving HCT services than sociodemographic and health status measures. Although future work is needed in larger, more diverse populations, developing a medical home model that promotes anticipatory guidance for HCT, including provider-youth communication and incorporates skills assessment and building for young adults, will promote improvements in HCT services and may ultimately improve health outcomes after transition to adult-centered care.
We acknowledge the National Center for Health Statistics and State and Local Area Integrated Telephone Survey (SLAITS) for the initial data collection and administration of the SATH survey. We also acknowledge Kathy O'Connor, MPH, at National Center for Health Statistics, for technical support with the data set. The authors are responsible for the analysis, interpretation, and conclusions.
- Accepted May 13, 2011.
- Address correspondence to Gregory S. Sawicki, MD, MPH, Division of Respiratory Diseases, Children's Hospital Boston, 300 Longwood Ave, Boston, MA 02115. E-mail:
Drs Sawicki and Wood were responsible for study design, data analysis, preparation and revision of the manuscript; Ms Lukens-Bull was responsible for study design, data acquisition, and revision of the manuscript; and Ms Whitworth, Dr Butterfield, and Dr Gunn were responsible for data analysis, and preparation and revision of the manuscript.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
- YSHCN —
- youth with special health care needs
- HCT —
- health care transition
- NS-CSHCN —
- National Survey of Children with Special Health Care Needs
- SATH —
- Survey of Adult Transition and Health
- SHCN —
- special health care need
- OR —
- odds ratio
- CI —
- confidence interval
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- Copyright © 2011 by the American Academy of Pediatrics