BACKGROUND:

Our objective in this study was to describe the association between the receipt of health care transition services (HCTS) and having a medical home in youth with autism spectrum disorder (ASD). Youth with ASD receive HCTS less often than other youth with special health care needs but are in particular need of continuous, comprehensive health care.

METHODS:

We used the National Survey of Children with Special Health Care Needs to describe the receipt of HCTS in youth with ASD and its association with presence of a medical home. Descriptive statistics are presented, and logistic regression is used to assess the association between medical home and HCTS.

RESULTS:

Twenty-one percent of youth with ASD met the criteria for receiving HCTS. Youth with ASD and a medical home were almost 3 times as likely to receive HCTS as youth without a medical home, and youth who received family-centered care and have adequate care coordination within the medical home were more than twice as likely to receive HCTS as those who did not.

CONCLUSIONS:

Youth with ASD are not receiving HCTS at the same rate as their peers. Increasing provider awareness of autism, the components of a medical home, and of the importance of HCTS could greatly help increase the percentage of youth who receive effective HCTS.

The transition from adolescence to young adulthood is a time of great change. It marks the end of secondary education and legal status as a child, distinct physical changes, and the beginning of new responsibilities and social roles. This transition period is often tumultuous, and those with disabilities and special health care needs have a harder time during this transition because changes in eligibility for supportive services pose unique challenges.1,2 Individuals on the autism spectrum are particularly vulnerable during these transitions because of the core symptoms of the disorder and the lack of available resources for support through transition and into adulthood.3,4 In this study, we examined the health care transition of youth on the autism spectrum to gain insight on the mutable factors associated with successful transitions.

Autism spectrum disorder (ASD) is a developmental disability characterized by social communication and interaction deficits, restricted and repetitive patterns of behavior, and significant functional impairment.5 In the United States, 1 in 68 children are estimated to have ASD, with ∼50 000 youth with autism turning 18 years old every year.6,7 Of youth with ASD, 50% have a co-occurring medical condition that requires regular medical attention, and of youth with ASD ages 15 to 17 years, 60% have at least 2 conditions in addition to ASD.8,9 Because of the demand placed on the medical system by the growing numbers of youth with ASD, their complex and prevalent comorbid health care needs, and their need for specialty care, the barriers to the receipt of sufficient health care services and the need for care and specialty care are concerning.

Better health care transition and more comprehensive health care in young adulthood have the potential to improve the health outcomes of people with ASD. Health care transition is the individualized process of care that is used to address the comprehensive health care needs of children as they age into adulthood and is designed to maximize lifelong functioning and potential by providing patient-centered care during that transition.10 Youth with special health care needs (YSHCN) often have more need for health care transition services (HCTS) than do other youth,11 and youth with ASD often have more outpatient and inpatient hospital visits that are longer in mean duration, more emergency department visits, more primary care and psychiatric visits, more health care claims, and higher health care expenditures than other YSHCN.12 

YSHCN and youth with ASD with a medical home may be more likely to have had a discussion with their doctors about a plan to address their changing health care needs as they enter adulthood.8,13 Youth with ASD with a medical home may also experience fewer barriers to adequate care and less impact on parental work and finances.14,15 A medical home is a concept described by the American Academy of Pediatrics and should include a comprehensive, centralized medical record, culturally competent care, interaction with schools and early intervention services, and provide families with clear, unbiased information.10 

The greater use of health care services reveals that youth with ASD could benefit greatly from HCTS and a medical home. However, current research reveals that youth with ASD receive both of these things less often than do other YSHCN.16,17 The presence of co-morbid conditions, which is common in ASD, is also associated with a lower rate of HCTS.17 Common comorbid conditions include intellectual disability, mental health conditions (eg, depression and anxiety), attention-deficit/hyperactivity disorder, and epilepsy.18,19 

To improve our understanding of the mutable factors that may influence HCTS receipt in individuals with ASD, we had 3 main aims. First, we describe the distribution of predisposing, enabling, and need factors as theorized in Andersen and Davidson’s20 model for youth who do and do not receive HCTS and describe significant differences. Second, we examine whether the receipt of care within a medical home is associated with the receipt of HCTS. Third, we assess the association between each component of the medical home and the receipt of HCTS. We hypothesize that the presence of a medical home will be associated with a higher likelihood of receiving HCTS. Among the individual components of the medical home, we hypothesize that care coordination will have the largest association with receiving HCTS because of the high rate of complex needs in the ASD patient population. Answering these questions may reveal potential targets for health policy change and provider education with the goal of increasing the receipt of HCTS in this vulnerable population.

Data for this analysis came from the 2009–2010 National Survey of Children with Special Health Care Needs (NS-CSHCN). The NS-CSHCN is a national survey conducted by the National Center for Health Statistics of parents of children ages 0 to 17 years with special health care needs and is funded by the Health Resources and Services Administration’s Maternal and Child Health Bureau. Of the 40 242 completed surveys, 3055 included children whose parents reported that their children had a current ASD diagnosis. Of these, analysis was restricted to youth ages 12 to 17 years with complete data on the health care transition service indicators (n = 1119). Detailed information on the sampling and study design of the NS-CSHCN has been published.21 

The outcome of interest was the receipt of HCTS. We used the Child and Adolescent Health Measurement Initiative (CAHMI) indicators for HCTS receipt and medical home receipt,22 which were created to meet the American Academy of Pediatrics definitions. The 4 components of HCTS receipt include the following: discussing the switch to a doctor who treats adults if necessary, discussing changing health care needs as an adult, planning how to get or keep insurance coverage as an adult, and encouragement by the doctor for the child to take age-appropriate responsibility for his or her health care.22 To meet the requirement for the receipt of HCTS, the parent had to report meeting all 4 components of HCTS or report not needing a component. This indicator was first used in the current form in the 2005–2006 iteration of the NS-CSHCN and has since been used in many research studies and to inform Healthy People 2020 goals.

We organized our thinking using Andersen and Davidson’s20 model of health care use. This model clustered predictors of health care use into 3 main groups: predisposing factors (factors or conditions that influence an individual’s propensity to use services), enabling factors (conditions that help or hinder service use), and need factors (aspects of health impairment that require medical services).

The main covariates of interest were the presence of a medical home (indicated by an affirmative response to all components or not needing certain components) and its constituent components: having a personal doctor or nurse, having a usual source of sick and well care, experiencing family-centered care, the ability to get needed referrals, and receiving effective care coordination.22 

In accord with Andersen and Davidson’s20 model of health care use, covariates were placed into 3 categories. Categories for predisposing factors (race and ethnicity, primary language spoken in the household, household composition and family structure, and highest level of parent education), enabling factors (household income, type of insurance held by the youth, number of children and children with special health care needs in the household, and receipt of care within a medical home), and need factors (parent-reported ASD severity, level of daily activity limitations because of disability, and number of health conditions reported from a list of 20 conditions) can be seen in Table 1.

TABLE 1

Distribution of Predisposing, Enabling, and Need Factors for Youth With ASD Ages 12–17 Years Who Do and Do Not Receive HCTS

Met Necessary Components of HCTS ReceiptDid Not Meet Necessary Components of HCTS Receipt
Weighted %SEWeighted %SE
Predisposing factors     
 Race and/or ethnicity     
  Hispanic 6.5 2.5 12.4 2.3 
  White, non-Hispanic 75.1 4.6 69.3 2.9 
  African American, non-Hispanic 5.1 2.3 10.0 1.8 
  Other, non-Hispanic 13.3 3.8 8.3 1.6 
 Primary language spoken in the home     
  English 97.1 1.7 96.4 1.5 
  Other 2.9 1.7 3.6 1.5 
 Household composition     
  2 parents, biological or adopted 57.9 4.9 55.2 3.0 
  2 parents, step-family 11.1 2.6 7.9 1.4 
  Mother-only household 23.6 4.5 25.1 2.5 
  Other family structure 7.4 2.4 11.9 2.3 
 Highest level of parent education     
  Less than high school 2.4 1.3 10.6 2.5 
  High school graduate 22.1 4.6 14.1 2.2 
  More than high school 75.6 4.7 75.3 3.0 
Enabling factors     
 Household income, % FPL     
  0–99 7.2 2.5* 18.1 2.5* 
  100–199 21.9 4.3* 18.3 2.2* 
  200–399 32.1 4.6* 32.8 2.9* 
  ≥400 38.9 4.8* 30.9 2.7* 
 Insurance type     
  Private only 50.9 5.0 48.5 3.0 
  Public only 31.6 5.1 27.3 2.6 
  Both public and private 16.5 3.9 21.3 2.9 
  Uninsured 1.1 0.6 3.0 0.9 
 No. children in household     
  1 35.1 4.7 36.0 2.8 
  2 46.6 4.9 37.6 3.0 
  3 10.3 3.0 17.1 2.3 
  ≥4 8.1 2.8 9.4 1.8 
 No. children with special health care needs     
  1 73.4 4.6 71.1 2.8 
  2 21.0 4.3 22.9 2.6 
  ≥3 5.6 2.5 6.1 1.8 
Need factors     
 Parent-reported severity of ASD     
  Mild 55.6 4.9** 40.5 2.9** 
  Moderate 36.8 4.8** 40.5 3.0** 
  Severe 7.7 2.9** 18.9 2.7** 
 Level of activity limitation in the past 12 mo     
  Never affected 9.1 2.4** 6.0 1.5** 
  Moderately affected, some of the time 37.1 4.9** 21.0 2.2** 
  Consistently affected, often a great deal 53.8 5.0** 73.0 2.5** 
 No. conditions reported     
  1 6.7 2.3 6.5 1.6 
  2 16.6 3.5 12.2 1.8 
  3 24.7 4.4 14.6 2.0 
  ≥4 52.1 4.9 66.8 2.8 
Met Necessary Components of HCTS ReceiptDid Not Meet Necessary Components of HCTS Receipt
Weighted %SEWeighted %SE
Predisposing factors     
 Race and/or ethnicity     
  Hispanic 6.5 2.5 12.4 2.3 
  White, non-Hispanic 75.1 4.6 69.3 2.9 
  African American, non-Hispanic 5.1 2.3 10.0 1.8 
  Other, non-Hispanic 13.3 3.8 8.3 1.6 
 Primary language spoken in the home     
  English 97.1 1.7 96.4 1.5 
  Other 2.9 1.7 3.6 1.5 
 Household composition     
  2 parents, biological or adopted 57.9 4.9 55.2 3.0 
  2 parents, step-family 11.1 2.6 7.9 1.4 
  Mother-only household 23.6 4.5 25.1 2.5 
  Other family structure 7.4 2.4 11.9 2.3 
 Highest level of parent education     
  Less than high school 2.4 1.3 10.6 2.5 
  High school graduate 22.1 4.6 14.1 2.2 
  More than high school 75.6 4.7 75.3 3.0 
Enabling factors     
 Household income, % FPL     
  0–99 7.2 2.5* 18.1 2.5* 
  100–199 21.9 4.3* 18.3 2.2* 
  200–399 32.1 4.6* 32.8 2.9* 
  ≥400 38.9 4.8* 30.9 2.7* 
 Insurance type     
  Private only 50.9 5.0 48.5 3.0 
  Public only 31.6 5.1 27.3 2.6 
  Both public and private 16.5 3.9 21.3 2.9 
  Uninsured 1.1 0.6 3.0 0.9 
 No. children in household     
  1 35.1 4.7 36.0 2.8 
  2 46.6 4.9 37.6 3.0 
  3 10.3 3.0 17.1 2.3 
  ≥4 8.1 2.8 9.4 1.8 
 No. children with special health care needs     
  1 73.4 4.6 71.1 2.8 
  2 21.0 4.3 22.9 2.6 
  ≥3 5.6 2.5 6.1 1.8 
Need factors     
 Parent-reported severity of ASD     
  Mild 55.6 4.9** 40.5 2.9** 
  Moderate 36.8 4.8** 40.5 3.0** 
  Severe 7.7 2.9** 18.9 2.7** 
 Level of activity limitation in the past 12 mo     
  Never affected 9.1 2.4** 6.0 1.5** 
  Moderately affected, some of the time 37.1 4.9** 21.0 2.2** 
  Consistently affected, often a great deal 53.8 5.0** 73.0 2.5** 
 No. conditions reported     
  1 6.7 2.3 6.5 1.6 
  2 16.6 3.5 12.2 1.8 
  3 24.7 4.4 14.6 2.0 
  ≥4 52.1 4.9 66.8 2.8 

Shown is the distribution of the key covariates in youth with ASD with and without a medical home and a comparison of the difference in distribution between the 2 groups. The covariates are conceptualized and displayed by using Andersen and Davidson’s20 model of health care use. We used logistic regression to test for difference across groups, with HCTS as the dependent variable and 1 variable per model. FPL, federal poverty level.

*

P > .05.

**

P > .01.

All of the factors included in analysis have been found in previous research to be associated with HCTS and the presence of a medical home in youth with ASD8,14,15,17,23 as well as all YSHCN.24,25 

Analyses were conducted using the NS-CSHCN 2009–2010 Data Resource Center for Child and Adolescent Health indicator data set, which is available through a data use agreement. The distributions of independent variables stratified by HCTS receipt are presented as weighted proportions. Differences in the distribution of these factors between those who received HCTS and those who did not were tested by using weighted logistic regression, with HCTS receipt being the dependent variable and 1 covariate being included per model. Weighted logistic regression was used to assess the relationship between the receipt of HCTS and the medical home and its constituent components. There were 2 final models, 1 with the composite measure of medical home as a main predictor and 1 with the 5 components of medical home as individual predictors. Both models controlled for all predisposing, enabling, and need factors. All analyses were done in Stata 13 (StataCorp, College Station, TX) and took into account the complex sampling design of the survey.

Among youth with ASD, 21% met the criteria for receiving HCTS. There were no significant differences between youth who received HCTS in predisposing factors.

There were significant differences in enabling factors: 38.9% of youth who received HCTS lived in households at ≥400% of the federal poverty level compared with 30.9% of youth who did not receive HCTS. Other enabling factors did not significantly differ between youth who received HCTS and youth who did not. Two of the 3 need factors differed significantly; youth with ASD who received HCTS had lower parent-reported levels of severity and less often reported high levels of activity limitations than did youth with ASD who did not receive HCTS. Of youth with ASD whose parents reported mild severity, 27% received HCT services, as did 20% of those with moderate severity and 10% of those with severe parent-reported severity. Similarly, more youth who reported lower levels of daily activity limitations received HCTS (Table 1).

Significantly more youth who received HCTS had access to a medical home than did youth who did not receive HCTS. Considering medical home components, significantly more youth who received HCTS received family-centered care and had adequate care coordination than did youth who did not receive HCTS. There were no significant differences between receiving HCTS and the presence of the other 3 medical home components (Table 2).

TABLE 2

Presence of Medical Home Components for Youth With ASD Ages 12–17 Years With and Without HCTS

Youth With ASD Ages 12–17 y Who Receive HCTS (21%)Youth With ASD Ages 12–17 y Who Do Not Receive All Needed HCTS (79%)
Weighted %SEWeighted %SE
Has all medical home components if needed 45.2 4.9*** 21.6 2.3*** 
Receives family-centered care 71.3 4.8*** 47.2 3.0*** 
Has adequate care coordination if neededa 59.9 5.3*** 31.3 2.8*** 
Has no problem getting referrals if visits to other doctors are needed 83.6 6.5 65.2 4.6 
Has a usual source of sick and well care 92.6 2.8 89.6 2.1 
Has a personal doctor or nurse 94.1 3.0 94.2 1.2 
Youth With ASD Ages 12–17 y Who Receive HCTS (21%)Youth With ASD Ages 12–17 y Who Do Not Receive All Needed HCTS (79%)
Weighted %SEWeighted %SE
Has all medical home components if needed 45.2 4.9*** 21.6 2.3*** 
Receives family-centered care 71.3 4.8*** 47.2 3.0*** 
Has adequate care coordination if neededa 59.9 5.3*** 31.3 2.8*** 
Has no problem getting referrals if visits to other doctors are needed 83.6 6.5 65.2 4.6 
Has a usual source of sick and well care 92.6 2.8 89.6 2.1 
Has a personal doctor or nurse 94.1 3.0 94.2 1.2 

Shown is the percent of youth with ASD who have each component of a medical home, meet all necessary components, and are considered to have a medical home. Statistically significant differences between youth who receive HCTS and youth who do not are marked. We used logistic regression to test for difference across groups, with HCTS as the dependent variable and 1 variable per model.

a

Of those who needed care from a specialty doctor or other type of care (including counseling), had >1 doctor to communicate with, or had programs with which the doctor needed to communicate.

***

P > .001.

The odds of receiving HCTS were 2.75 times higher for youth who met all 5 components of having a medical home (model 1; Table 3). The odds of receiving HCTS were 2.39 times higher for those receiving family-centered care and 1.97 times higher for those receiving adequate care coordination (model 2; Table 3). Getting needed referrals, having a usual source of sick and well care, and having a personal doctor or nurse were not significantly associated with receiving HCTS.

TABLE 3

Logistic Regression Models of Receiving HCTS Among Youth With ASD Ages 12–17 Years

Model 1: Medical Home as the Main PredictoraModel 2: Medical Home Components as the 5 Main Predictorsa
aOR95% CIaOR95% CI
Met all needed components of having a medical home 2.75 1.69–4.48 — — 
Receives family-centered care — — 2.39 1.38–4.13 
Had adequate care coordination if needed — — 1.97 1.14–3.38 
Had no problem getting referrals if needed — — 2.26 0.69–7.34 
Had a usual source of sick and well care — — 1.22 0.46–3.24 
Had a personal doctor or nurse — — 0.89 0.24–3.25 
Model 1: Medical Home as the Main PredictoraModel 2: Medical Home Components as the 5 Main Predictorsa
aOR95% CIaOR95% CI
Met all needed components of having a medical home 2.75 1.69–4.48 — — 
Receives family-centered care — — 2.39 1.38–4.13 
Had adequate care coordination if needed — — 1.97 1.14–3.38 
Had no problem getting referrals if needed — — 2.26 0.69–7.34 
Had a usual source of sick and well care — — 1.22 0.46–3.24 
Had a personal doctor or nurse — — 0.89 0.24–3.25 

We include 2 models for representing the association between health care transition and the medical home. Model 1 shows the association between the presence of a medical home and health care transition, and model 2 shows the association between each component of a medical home and health care transition. aOR, adjusted odds ratio; CI, confidence interval; —, not applicable.

a

Other variables that were controlled for in this model include race, ethnicity, primary language spoken in the household, household income as a percent of the federal poverty level, family structure, parent-reported severity of ASD, level of activity limitation in the last 12 mo, type of insurance, No. children in the household, No. children with special health care needs in the household, highest level of parent education, and No. conditions from a list of 20.

We examined the relationship between the provision of care within a medical home and the receipt of HCTS in youth with ASD. Only one-fifth of youth with ASD receive HCTS, which is half as many as other YSHCN.17 Consistent with our hypothesis, youth with ASD who had all of the components of a medical home were more likely to receive HCTS. Youth with ASD who received family-centered care and those who had effective care coordination were more than twice as likely to receive HCTS than those who did not. It is important to note that nearly all youth had a personal doctor or nurse, effectively reducing the variance of this predictor in logistic regression models.

In this study, the medical home and its components were conceptualized as enabling factors to HCTS receipt. The medical home is a model for the provision of care that aims to provide more comprehensive care than traditional service access. Our results revealed that this holistic approach to care was associated with a higher likelihood of HCTS receipt, an outcome that is highly desired but often not achieved for youth with ASD. It is often true that a child will receive some components of the medical home but not others. This emphasizes the importance of examining the association of each medical home component with HCTS receipt.

Although this study shows the association between a medical home and HCTS receipt, providing adequate HCTS and creating a medical home for youth with ASD can be a difficult endeavor. Physician time, resources for care coordination, reimbursement for medical services, the lack of time to spend with youth with ASD, and the lack of specific knowledge of ASD on the part of the provider (including ASD services and community resources) are all barriers.23,26 Educational efforts to increase awareness of the importance of HCTS and the medical home could help compensate for the lack of specific ASD knowledge because patient- and family-centered care is at the core of both efforts. Health care transition has implications beyond the continuity of care from adolescence to adulthood; health care is described by youth with autism and their parents as a critical and time-consuming part of their lives.26 Although transition planning is encouraged and valued, there is no model of health care transition provision that is widely used in pediatric health care practices. The medical home model could provide the necessary infrastructure in many cases to increase the proportion of youth receiving HCTS.

There are several limitations to this study. First, the survey was completed by parents and is subject to biases, including recall and social desirability. Second, the presence of a medical home is derived from a combination of survey questions, and youth who reported not needing a service and/or component of the medical home were marked as receiving that component. It could be that the general YSHCN population report not needing services and/or components more often than do youth with ASD. This would result in fewer youth with ASD reporting access to a medical home because they need to access more services than do the general YSHCN population. This same response pattern is used for HCTS, creating the same limitations in its measurement.

A major strength of this study is its replicability because the measurement strategy for both HCTS receipt and the provision of care within a medical home were taken from a highly used source: the CAHMI. Previously, strategies for measurement have differed among studies, making it hard to compare results. However, the CAHMI measurement strategy is easily accessible and popularly used in this field, adding to the base of research that can be compared across disabilities and years. We also used a large, nationally representative data set that is generalizable to the US population of youth with ASD ages 12 to 17 years. The breadth of covariates available for control in adjusted logistic regression models is also comprehensive.

Youth with ASD are not receiving HCTS at the same rate as their peers with other special health care needs, but they likely have a greater need for these services than do many other youth. The link we established between receiving care in a medical home and receiving HCTS underscores the need for future research and practice changes to increase the proportion of youth with ASD receiving HCTS. Steps toward increasing provider awareness of ASD; the benefits of a high-quality, comprehensive medical home; and the need for HCTS could greatly help increase the percentage of youth who receive effective HCTS.

     
  • ASD

    autism spectrum disorder

  •  
  • CAHMI

    Child and Adolescent Health Measurement Initiative

  •  
  • HCTS

    health care transition services

  •  
  • NS-CSHCN

    National Survey of Children with Special Health Care Needs

  •  
  • YSHCN

    youth with special health care needs

Ms Rast conceptualized and designed the study, drafted the initial manuscript, and performed data analysis; Dr Shattuck advised and participated in data analysis, the conceptualization and design of the study, and initial manuscript drafting and editing; Ms Roux participated heavily in manuscript revision and direction, as well as the interpretation of the data in a useful manner for the manuscript; Ms Anderson participated in the conceptualization of the related theories and concepts, as well as manuscript revision, heavily reordering the introduction, methods, and results to be more understandable; Dr Kuo participated in manuscript revision, particularly in the implications of the findings in practice and policy, and conceptualized the importance of the findings in the field; and all authors approved the final manuscript as submitted.

FUNDING: Produced through a generous, private donation to the Life Course Outcomes Research Program. This project was also supported by the Health Resources and Services Administration of the US Department of Health and Human Services (grant UA6MC27364) and title, the Health Care Transitions Research Network for Youth and Young Adults with Autism Spectrum Disorders (grant amount $900 000). The information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by, the Health Resources and Services Administration, Department of Health and Human Services, or the US Government.

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Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.