OBJECTIVE: Little is known about accessibility to health care transition (HCT) services for youth with autism spectrum disorder (ASD). This study expands our understanding by examining the receipt of HCT services in youth with ASD compared with youth with other special health care needs (OSHCN).
METHODS: We used the 2005–2006 National Survey of Children with Special Health Care Needs to examine receipt of HCT services for youth (aged 12–17 years) with ASD and youth with OSHCN. Logistic regression analyses explored whether individual, family, or health system factors were associated with receipt of HCT services for youth with ASD.
RESULTS: Whereas half of youth with OSHCN received HCT services, less than a quarter of youth with ASD did. Only 14% of youth with ASD had a discussion with their pediatrician about transitioning to an adult provider, less than a quarter had a discussion about health insurance retention, and just under half discussed adult health care needs or were encouraged to take on appropriate responsibility. Logistic regression analyses indicated that having a developmental disability or multiple health conditions in addition to ASD and quality of health care were strong predictors of HCT, whereas demographic and family variables accounted for little variance.
CONCLUSIONS: Youth with ASD experience disparities in access to HCT services. Youth with comorbid conditions are at greatest risk for poor access to HCT services and increased quality of care has a positive effect. Research is needed to understand barriers to care and develop policy and practice guidelines tailored for youth with ASD.
- autism spectrum disorder
- developmental disabilities
- health care transition
- transition to adulthood
- ASD —
- autism spectrum disorder
- FCC —
- family-centered care
- HCT —
- health care transition
- NS-CSHCN —
- National Survey of Children with Special Health Care Needs
- OSHCN —
- other special health care needs
- OR —
- odds ratio
- YSHCN —
- youth with special health care needs
What’s Known on This Subject:
Health care transition services assist youth with special health care needs (YSHCN) in transitioning to adult care without gaps in services or health insurance coverage. Less than half of YSHCN receive anticipatory assistance in this transition; receipt of these services for youth with autism spectrum disorder is unknown.
What This Study Adds:
Youth with autism spectrum disorder receive transition services half as often as youth with special health care needs. Quality of health care is associated with increased receipt of health care transition services. Presence of comorbid conditions decreased receipt of transition services.
Health care transition (HCT) services assist youth in the transition from pediatric to adult health care services, promote health insurance retention, and encourage independent management of health care needs. The provision of HCT services is important to all youth but imperative for those with special health care needs.1,2 HCT services have been shown to improve health care knowledge, vocational markers, and quality of life for youth with idiopathic arthritis.3 These services are theorized to decrease gaps in medical care and improve retention of health insurance for all youth with special health care needs (YSCHN).3,4 Initiatives to increase the receipt of HCT services are supported by numerous professional organizations and federal agencies serving YSHCN.5 In fact, improving the receipt of HCT services has been a goal of the Maternal and Child Health Bureau for more than a decade and was selected as a quality service indicator that is tracked within the National Survey of Children with Special Health Care Needs (NS-CSHCN).6,7
Youth with autism spectrum disorders (ASDs) are an important subgroup of YSHCN because of their increasing prevalence, high level of service needs, cost, and societal impact.8,9 In addition to their behavioral and communication difficulties, many youth with ASD have comorbid psychiatric and medical conditions, such as anxiety/depression, seizures, gastrointestinal problems, and sleep disturbances.10–12 Nearly half of all individuals with ASD have a major coexisting condition that requires regular medical attention.13 The combination of developmental disability and comorbid conditions increases dependence on the health care system during childhood, adolescence, and adulthood, making HCT services especially critical for this population.
By definition, HCT services should ensure that youth “receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.”14 Although this is a lofty goal, it is operationalized through the use of 4 basic questions, which ask parents of YSHCN if their pediatricians discussed the following: (1) shifting to an adult provider, (2) the health care needs of adults, (3) health insurance retention, and (4) the youth’s need to take on appropriate responsibility for his/her health care needs.14 Pediatricians are encouraged to initiate these discussions with YSCHN aged ≥12 years, with increased emphasis on their importance with each additional year.15,16 The prevalence of HCT services is low for YSHCN and unknown for youth with ASD.
Only 40% of YSHCN receive these transition services from their medical providers.7,17,18 Several factors have been shown to influence access to HCT services.17–21 Individual factors include age, gender, ethnicity, and complexity of condition.17–21 Family factors include family structure, parental education, household income, and health insurance status.17,18,20,21 The relationship between financial burden and HCT has not been studied but is associated with receipt of a medical home and other needed services.22 Shared decision-making, satisfaction with health care services, and the presence of a medical home were associated with receiving HCT services.17,18,20,21,23
Although previous studies in YSHCN have added to the understanding of access and use of HCT services, it is not clear to what extent these studies are applicable to youth with ASD. To address this gap in the literature and increase the understanding of HCT within the ASD population, this study investigated the following: (1) the prevalence of receiving HCT services among youth with ASD, (2) the difference in prevalence for youth with ASD compared with youth with other special health care needs (OSHCN), (3) how individual, family, and health system characteristics influence the acquisition of HCT services.
Data and Sample
The cross-sectional data used in this study came from the 2005–2006 NS-CSHCN, part of the State and Local Area Integrated Telephone Survey program. The study was sponsored by the Maternal and Child Health Bureau and conducted by the Centers for Disease Control and Prevention’s National Center for Health Statistics. The survey took advantage of the Center for Disease Control and Prevention’s National Immunization Survey sampling frame, using list-assisted, computer-assisted land-line telephone interview technology to randomly sample nationally representative households that were evenly distributed throughout the 50 states and the District of Columbia.24 The purpose of this sampling frame was to collect data on children younger than age 18 years.25
Data collection for the NS-CSHCN was completed for 192 083 households with children in the main sample screening. The parent or legal guardian who knew the most about the health of the children in the households was the main respondent within the interview. A total of 364 841 children resided in the households contacted; 56 014 children who resided in 44 923 households were determined to have special health care needs, and thus fit the initial criteria for the survey.24 When >1 child in a household had a special health condition, 1 child was randomly selected to have his or her information collected. A total of 40 723 children with special health care needs with complete information were eligible for the study.
Access to HCT services for youth was the outcome variable for this study; thus, only youth between the ages of 12 and 17 were eligible for this analysis (n = 18 198). The data set was further limited to youth with ASD (n = 806).
The HCT variable was created on the basis of the results of 4 questions. The first 3 questions focused on discussions between the youth’s caregivers and health care provider with regard to the following: (1) shifting to an adult health provider, (2) health care needs of adults, and (3) health insurance retention. The fourth component examines the extent to which the health care provider encouraged the youth to take on appropriate responsibility for his/her health care needs. Receiving HCT services was defined as having a health care provider who (1) usually or always encourages the adolescent to take appropriate responsibility for his/her health care needs and (2) if needed, discussed at least once the transition to an adult provider, the health care needs of adults, and how to retain health insurance into adulthood.7,14
Variables previously associated with health care and HCT in the YSHCN population were included in the analysis.17,18,21,26 Individual demographic explanatory variables included age, gender, and race/ethnicity (Table 1). Youth’s mental and physical health was examined by using several variables related to severity of health conditions and presence of comorbid conditions. Severity measures included the following: severity of child’s functional difficulties, child’s limited ability to do things other children do, amount of time child was affected by condition in the past 12 months, and family’s financial problems due to child’s health care needs.
The presence of comorbid conditions was another individual factor examined on the basis of methods used by Nageswaran et al.27 Comorbid conditions were categorized as the presence of the following: (1) developmental disability (Down syndrome, intellectual disability, or cerebral palsy), (2) mental health condition (attention deficit hyperactivity disorder, depression, anxiety, or emotional problems), (3) physical health condition (asthma, diabetes, heart problems, blood conditions, cystic fibrosis, muscular dystrophy, seizures, headache, joint problems, or allergies), or (4) multiple health conditions (the presence of >1 of the above categorized groups).
Family factors included poverty level, highest family educational level, family structure, and health insurance coverage at the time of interview. Quality of the health system was also examined and included the following questions: (1) Were families of YSHCN partners in decision-making at all levels and satisfied with the services received (decision-making and satisfied care) and (2) Did YSHCN receive coordinated, ongoing, and comprehensive care within a medical home (medical home)?
Descriptive statistics were calculated to identify the characteristics of the sample variables, the proportion of youth who met the transition outcome and each component measure, and comparisons between youth with ASD and youth with OSHCN (Tables 1 and 2). Logistic regression models were constructed to explore whether the outcome variable was associated with individual, family, and health system explanatory variables (Table 3).
In the analysis, crude odds ratios (ORs) and 95% confidence intervals (CIs) were estimated to examine associations between explanatory variables and the receipt of HCT services. SPSS 19 Complex Samples (IBM SPSS Statistics, IBM Corporation, Armonk, NY) was used for all analysis and weight estimates. The study used P values of <.05 as the threshold for statistical significance.
The demographic and condition characteristics of youth aged 12 to 17 years with ASD (n = 806) are described in Table 1. The vast majority of the sample was non-Hispanic white and male. Youth with ASD within our sample had strong family and financial resources because nearly all participants were insured, had a parent with a high school degree or above, and had a moderate to high household income. Even with these resources, more than a third of parents reported experiencing some financial problems due to their youth’s health condition.
The majority of youth with ASD had multiple health conditions and severe limitations in ability and functioning. Quality of the health system was also poor. A third of participants reported that the family was a partner in decision-making and were satisfied with care, and less than a quarter reported having a medical home.
Youth with ASD differed from youth with OSHCN in many ways (Table 1). Youth with ASD were more likely to be younger, male, lower income, and have private health insurance or a combination of public and private. Families of youth with ASD reported more limitations in ability and functioning, more developmental and multiple health conditions, and more family financial problems due to the child’s health. Furthermore, when compared with youth with OSHCN, those with ASD received poorer quality health care services.
Frequency of HCT Services
Less than a quarter of youth with ASD received HCT services (21%). Within the component items, less than half of youth with ASD were usually or always encouraged to take on appropriate responsibility for his/her health care needs (Table 2). Similarly, 40% of participants discussed adult health care needs with their provider, but less than a quarter of participants had a similar discussion about health insurance retention (22%) or transitioning to an adult provider (14%).
Comparisons of Youth With ASD to Youth With OSHCN
Overall, youth with ASD received fewer transition services than did those with OSHCN. Youth with ASD were half as likely to receive HCT services (21% vs 43%, P < .05) and a third as likely to be encouraged by a provider to take on appropriate responsibility for his/her health care needs (45% vs 74%, P < .05). Discussions about transitioning to an adult provider and adult health care needs occurred significantly less frequently for youth with ASD than for youth with OSHCN (14% vs 20% and 40% vs. 47%, respectively; P < .05). Having a discussion about health insurance retention was the only variable in which youth with ASD and OSHCN did not significantly differ.
Logistic Regression Model
Within the logistic regression, individual and health system factors predicted receipt of HCT services, whereas family factors did not (Table 3). Only 1 demographic factor, race/ethnicity, was shown to predict receipt of HCT services. Specifically, being Hispanic compared with non-Hispanic white decreased the odds of receiving HCT services by 71% for youth with ASD (OR: 0.29; 95% CI: 0.10, 0.86). A variety of individual factors related to condition severity and comorbid conditions were examined within our analysis. Having multiple health conditions in addition to an ASD diagnosis decreased the odds of receiving HCT services by 81% (OR: 0.19; 95% CI: 0.05, 0.67). With all else being equal, the presence of an additional developmental disability made a youth with ASD 22% less likely to receive HCT services (OR: 0.78; 95% CI: 0.01, 0.70).
Last, decision-making and being satisfied with care were shown to predict receipt of HCT services. Participants who reported being partners in decision-making and satisfied with the care they received were nearly 3 times more likely to receive HCT services (OR: 2.77; 95% CI: 1.46, 5.29).
The first aim of the study examined the prevalence of HCT services in youth with ASD and found their access to these services to be severely deficient. Less than a quarter of youth received HCT services and less than half received any of the discussions about transitioning. Because this is the first study to examine HCT in youth with ASD, it is not possible to compare these results with other data.
The second aim of the study was to investigate the difference in prevalence of HCT services for youth with ASD compared with youth with OSHCN. Youth with ASD were far less likely to receive HCT services. This study found that the odds of youth with ASD receiving HCT services were 64% lower than for a youth with OSHCN. Similarly, youth with ASD had 70% lower odds of being encouraged to take on appropriate responsibility for his/her health care needs. Other studies have found few differences in access to HCT services between groups of youth with OSHCN.19 This is the first study to compare receipt of HCT services between youth with ASD and youth with OSHCN, and the differences revealed were substantial.
When examining the literature on health care access, utilization, and cost for children with ASD compared with children with OSHCN, similar disparities can be found.28 Although the research is limited, it appears that children with ASD use more health care services and their families spend more on services compared with children with OSHCN, but they report less access.28 This study confirms and extends these findings for youth with ASD. Further research is needed to understand why this disparity exists and what interventions may improve access for this population.
The third aim examined how individual, family, and health system characteristics influence the receipt of HCT services. Individual factors shown to predict receipt of HCT services included being Hispanic, having a developmental disability, and having multiple health conditions. Similar to our study, Ngui and Flores29 found that Hispanics with special health care needs received less family-centered care (FCC) and decreased access to services. Sawicki et al30 reported similar findings but examined young adults with special health care needs and examined only 2 of the 4 HCT questions in our study. Other studies reported that individual and family demographic factors, such as age, insurance status, and poverty level, were significant predictors of HCT in YSHCN.17–19
The presence of a comorbid condition was a strong predictor of HCT, but other severity measures such as functioning difficulties, limited ability, and amount of time affected by the condition were not significant factors associated with HCT in our study. Similar indicators have been shown to predict receipt of HCT services in YSHCN and in the general young adult population.17,18,26 Although target population and severity measurements varied considerably, these studies reported similar findings; ie, as the complexity of condition increases, the likelihood of receiving HCT services decreases. The comorbid condition variables used within the present study may be a more accurate measure of complexity because it is not as subjective as parental report of functioning and activity limits.
In general, YSHCN who have more complex health care needs are less likely to receive transition services. As a youth’s health becomes increasingly compromised, the health care provider has more to do. Counseling youth on transition into adult life and adult health care services may seem like an impossible and/or inconsequential task when the most of a short appointment time with a physician is spent addressing immediate and pressing health needs. Many physicians are not trained in caring for YSHCN, especially youth with behavioral and/or communication challenges.5,31,32 Few physicians and medical practitioners are trained in the importance of and procedures for HCT, and the time required to provide these services is not financially reimbursable.5,31 Furthermore, in many regions, there is a paucity of adult providers with an understanding of developmental disabilities, such as ASD, and its associated conditions.
The quality of health care services for youth with ASD provides a protective factor. Similar to previous research, familial report of being a partner in decision-making and being satisfied with care are associated with receiving HCT services in youth with ASD.23,33 These variables have some overlap with FCC, which is a component of the medical home. FCC is related to positive outcomes, including increased access to specialty services and decreased emergency department visits, inpatient hospitalizations, unmet needs, and missed school days.29,34–36
This study has several limitations. Partitioning of the sample may have further reduced its representativeness. No family factors were shown to predict HCT services within this sample. These findings may be due to the lack of variation in many of the family factors such as health insurance status or educational level. The NS-CSHCN is a fairly homogeneous sample, especially when limited to youth with ASD. In addition, the HCT questions are parent reported and based on perceived need, which may bias the prevalence of HCT services.37,38 The cross-sectional point-in-time methodology of this and previous surveys does not permit examination of a causal relationship between explanatory variables and HCT.
The variables analyzed within this study give us only a glimpse of HCT as a whole and do not assess the larger need for transition services. HCT questions do not examine the content of discussions between providers, youth, and parents and do not gauge satisfaction with the discussions or need for follow-up assistance. Future research should examine the quantity and quality of HCT services. Although HCT is important, it is only a small piece of the broader transition process for youth with ASD. Assistance with social, vocational, and mental health transitioning is important to this population and often intersects with the health care setting. Although these limitations may reduce the generalizability of our findings, this is the only study to examine the receipt of HCT services for youth with ASD and one of the largest studies examining service needs for persons with ASD.
This is the first study to examine the prevalence of HCT services for youth with ASD. Youth with ASD experience significant disparities in the receipt of HCT services. Less than a quarter of youth with ASD receive HCT services, and they are half as likely to receive these services than are youth with OSHCN. Comorbid condition and quality of the health system were strong predictors of HCT, whereas demographic and family factors accounted for little variance.
Education and training for providers, caregivers, and youth with ASD are essential to ensure that all parties are working together to address transition issues early and often. Some work has been accomplished in the YSHCN population that should be adapted and applied to youth with ASD and their families.39,40 Practitioners across disciplines should strive to incorporate successful HCT practices with similar efforts in educational, vocational, and community settings to maximize social integration and quality of life for individuals with ASD and for all YSHCN.
- Accepted November 2, 2012.
- Address correspondence to Nancy Cheak-Zamora, PhD, 510 Clark Hall, Department of Health Sciences, University of Missouri, Columbia, MO 65211. E-mail:
Dr Cheak-Zamora conceptualized and designed the study, supervised all analyses, drafted the initial manuscript, and approved the final manuscript as submitted; Ms Yang carried out the initial analyses, drafted the Methods section of the manuscript, and approved the final manuscript as submitted; Dr Farmer assisted in the conceptualization and study design, critically reviewed the manuscript, and approved the final manuscript as submitted; and Ms Clark assisted in the conceptualization and study design, assisted in initial analyses, critically reviewed the manuscript, and approved the final manuscript as submitted.
FINANCIAL DISCLOSURE: The authors have no financial relationships relevant to this article to disclose.
FUNDING: The authors have conducted related work on transition in ASD with funding from the US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Division of Services for Children with Special Health Needs, Grant number H6MMC11059.
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- Copyright © 2013 by the American Academy of Pediatrics