© 2014 American Psychological Association 0090-5550/14/$ 12.00 http://dx.doi.org/10.1037/a0036725
Rehabilitation Psychology 2014, Vol. 59, No. 3, 340-348
Health Care Transition Services for Youth With Autism Spectrum Disorders Nancy C. Cheak-Zamora, Janet E. Fanner, Wayne A. Mayfield, and Mary J. Clark
Alison R. Marvin Kennedy Krieger Institute, Baltimore, MD
University of Missouri
J. Kiely Law and Paul A. Law Kennedy Krieger Institute, Baltimore, MD, and Johns Hopkins University School of Medicine Objective: Little is known about accessibility to health care transition (HCT) services (HCT) for youth with autism spectrum disorders (ASD). This study examined how often youth with ASD receive HCT services and how access varied by individual, family, and health system characteristics. Method: Questionnaires were completed by 101 parents of youth with ASD (ages 12-17 years) enrolled in a national online autism registry. Descriptive statistics and bivariate analysis were used to examine a composite HCT variable and its components. Results: Fewer than 15% of youth received HCT services. Although 41% received at least 1 HCT discussion, only 3% received all 3. One-quarter had a discussion with their health care provider about transitioning to an adult provider, adult health care needs, or insurance retention, and 31% of providers encouraged youth to take on more responsibilities. Most caregivers reported not needing 1 or more of the discussions. Results varied significantly when the sample was divided by age, with older youth more likely to have received transition services than younger adolescents. Conclusions: These findings indicate a significant disparity in access to HCT services for youth with ASD. Further research is needed to understand this disparity and develop interventions to improve HCT both for youth with ASD and those with other disabling health conditions. Additionally, many caregivers do not recognize the importance of HCT services. Education and training for caregivers, youth, and providers is essential to ensure all parties are working together to address transition issues early and often. Keywords: autism spectrum disorder, adolescence, health care services, health care transition
about the need to address HCT issues early and often. Furthermore, they can advance research on ways to improve comprehensive and coordinated HCT services so that all youth can maximize their functional independence
Impact and Implications • Health care transitioning is a process that attends to the medical, psychological, social, and education/vocational needs of adolescents as
during adulthood.
they move from the child-focused to the adult-focused health care system. • This study shows that youth with ASD experience limited access to effective HCT services. Furthermore, their caregivers are often not fully aware of the need for HCT services. • Rehabilitation psychologists can contribute by educating providers, caregivers, and youth with ASD and those with other disabling conditions
Introduction Over 11 million children have a special health care need that is potentially disabling (Child and Adolescent Health Measurement Initiative, 2012). Ninety percent of these children will live into adulthood, which means that approximately 500,000 youth with special health care needs (YSHCN) make the transition from a pediatric health care provider to an adult-oriented provider each year (Reiss & Gibson, 2002). The need for health care transition (HCT) services for this population puts a strain on the health care system and YSHCN and their families. Youth with autism spectrum disorders (ASD) are an important subgroup of YSHCN because of their increasing numbers, high level of service needs, cost, and societal impact (Ganz & Ten dulkar, 2006). ASD is a complex disorder characterized by im pairments in verbal and nonverbal communication and social in teractions and restrictive or repetitive behaviors (Huerta, Bishop, Duncan, Hus, & Lord, 2012). HCT services are of the utmost importance to this group because in addition to their behavioral and communication difficulties, youth with ASD may have other comorbid psychiatric and medical conditions, such as anxiety/
This article was published Online First July 14, 2014. Nancy C. Cheak-Zamora, Department of Health Sciences, University of Missouri; Janet E. Farmer, Department of Health Psychology, University of Missouri; Wayne A. Mayfield, Office of Social and Economic Data Analysis, University of Missouri; Mary J. Clark, TE Atkins Wellness Program, University of Missouri; Alison R. Marvin, Department of Med ical Informatics, Kennedy Krieger Institute, Baltimore, MD; J. Kiely Law, Department of Medical Informatics, Kennedy Krieger Institute, and De partment of Pediatrics, Johns Hopkins University School of Medicine; Paul A. Law, Department of Medical Informatics, Kennedy Krieger Institute, and Department of Pediatrics, Johns Hopkins University School of Medi cine. Correspondence concerning this article should be addressed to Nancy C. Cheak-Zamora, PhD, 510 Clark Hall, University of Missouri, Columbia, MO 65211. E-mail: [email protected]
340
TRANSITION SERVICES FOR YOUTH WITH ASD
depression, seizures, gastrointestinal problems, and sleep distur bance (Coury, Jones, Klatka, Winklosky, & Perrin, 2009; Mazurek & Kanne, 2010). Nearly 50% of individuals with ASD have a major coexisting condition that requires regular medical attention (Billstedt, Gillberg, & Gillberg, 2005). This combination of devel opmental disability and comorbid conditions increases these indi viduals’ dependence on the health care system throughout all stages of life, making HCT services especially critical. The Society of Adolescent Health and Medicine describes tran sition as “a multifaceted, active process that attends to the medical, psychosocial, and educational/vocational needs of adolescents as they move from the child-focused to the adult-focused health care system” (Blum et al., 1993). Within HCT research, this is opera tionalized through the use of four basic questions asking caregivers of YSHCN if their doctors discussed the following: (a) shifting to an adult provider, (b) health care needs of adults, (c) health insurance retention, and (d) youth’s need to take on appropriate responsibility for his or her health care needs (Child and Adoles cent Health Measurement Initiative, 2012). Increased access to HCT planning is supported by major professional organizations and federal agencies serving YSHCN, including ASD (American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, Transitions Clinical Report Authoring Group, 2011). Pediatricians should initiate these dis cussions at 12 years of age with increased emphasis on their importance with each additional year (Holtz, Owings, & Ziegert, 2006; Lotstein et al., 2009). In actual practice, the extent to which YSHCN receive these HCT services is disturbingly low, with only 40-41% receiving HCT ser vices (Kane et al., 2009; Lotstein et al., 2009; McManus et al., 2013). Encouraging youth to take appropriate responsibility for their health care needs is most frequently delivered (78%), whereas discussions regarding health insurance retention were least likely to occur (3435%; Kane et al., 2009; Lotstein et al., 2009; McManus et al., 2013). Numerous individual- and family-related factors have been associated with receipt of adequate HCT services in YSHCN including the following: being female, being non-Hispanic Caucasian, living in a two-parent household, having health insurance, caregiver level of education and income, and child’s condition severity (Kane et al., 2009; Lotstein et al., 2009; McManus et al., 2013; Seal, Horvath, & Garwick, 2009). Most studies have found that older youth are more likely to receive transition services; however, McManus et al. (2013) found that being younger increased the likelihood of receiving HCT services. They note that this is likely caused by caregivers of young youth reporting not needing HCT services. This signals the need for further research to clarify the effect of age on the receipt of HCT services. Although multiple studies have examined accessibility to HCT services within the larger YSHCN population, only one study has examined these services in youth with ASD (Cheak-Zamora, Yang, Farmer, & Clark, 2013). This study indicated that youth with ASD receive HCT services far less often than other YSHCN, with only 21% of youth with ASD receiving such services. Similar disparities are seen within each component item because less than a quarter of youth with ASD receive any of the individual HCT discussions. Demographic factors associated with access to HCT services in youth with ASD were not consistent with factors identified in the larger group of YSHCN. Only race/ethnicity was
341
associated with HCT in youth with ASD, with those from Hispanic groups less likely to receive these services. The impact of the youth’s health condition was similar for YSHCN and youth with ASD in that youth with less complex health care conditions were more likely to receive HCT services than those with more complex conditions (Cheak-Zamora et al., 2013; Lotstein et al., 2009; McManus et al., 2013; Seal et al., 2009). Additionally, quality of the health care system was a factor in both groups. For YSHCN, parental report of satisfaction with care and the presence of a medical home increased the likelihood of receiving HCT services (Kane et al., 2009; Lotstein et al., 2009; McManus et al., 2013; Seal et al., 2009). For youth with ASD, parent-reported satisfaction with care and partnership in decision making were associated with receiving HCT services, but the presence of a medical home as defined in national surveys was not (Cheak-Zamora et al., 2013). This study did not examine factors that influence receipt of HCT services for youth with ASD within different age groups, it also did not shed light on caregivers’ perceptions about what individual components of HCT services are needed or not needed. Additional research is warranted so effective interventions can be designed to support youth with ASD during the transition to adulthood. Youth with ASD have an increased need for HCT services as a result of the combination of developmental disability and comorbid conditions. Unfortunately, few youth with ASD seem to receive these services, and only one study to date has examined this issue within this population. Because of their increased need, decreased access to care (ATC), and the paucity of research within this area, the purpose of our study is to extend previous research on HCT in youth with ASD using a sample selected from a national online autism research registry. Objectives included the following: (a) to investigate how often youth with ASD enrolled in the registry received adequate HCT services; (b) to conduct an analysis of the individual components of HCT services; and (c) to examine the impact of variables not previ ously investigated among youth with ASD (e.g., younger and older age groups, type of ASD diagnosis).
Method Data Source Participants were recruited from the Interactive Autism Network (IAN), an online, voluntary, United States-based autism registry that has enrolled more than 37,000 individuals (11,663 house holds) affected by ASD and their family members (Interactive Autism Network, 2011). Individuals with ASD under 18 years of age who received an ASD diagnosis from a professional are enrolled by a parent into the registry. Participants are recruited at diagnostic clinics, autism centers, doctors’ offices, other service providers, and community groups. Further, the IAN has a very large online and social media presence. IAN participants have access to the IAN community, which includes discussion boards, news and blog updates, access to aggregated state and national IAN data, access to all publications using IAN data, and notifica tions about additional (often paid) research studies. Although the IAN registry has a known bias toward families with higher income and education levels, the IAN is the largest pool of ASD data in the world and has been used in dozens of peer-reviewed journal articles (Interactive Autism Network, 2011).
CHEAK-ZAMORA ET AL.
342
The diagnosis of ASD in the IAN database has been clinically validated and verified by review of records in a subset of participants (Daniels et al., 2012; Lee et al., 2010). As part of a larger study, an ATC Questionnaire was sent by electronic mail to the caregivers of 2,393 children in the IAN registry on December 1, 2009 (Fanner et al., 2013). All study procedures were approved by the institutional review boards at the two universities involved in this project. As shown in Figure 1, the sample was restricted to families with youth 12 to 17 years of age with complete HCT information. Within the total sample, 600 of the 2,393 participants met the adolescent age requirement. Of these, 114 completed the question naire, resulting in a 19% response rate, which is typical for IAN online surveys. Thirteen respondents did not complete the HCT information. This yielded 101 eligible participants who were in cluded in the final analysis.
Measures Nearly all questions on the ATC Questionnaire were adapted with permission from the 2005/2006 National Survey of Children with Special Health Care Needs (NS-CSHCN) to identify unmet needs (Child and Adolescent Health Measurement Initiative, 2009). Addi tional questions requested information on family income, health in surance coverage, and child health status. Information from the IAN database (e.g., age, diagnostic category) was also included. This approach gave us a unique opportunity to examine questions about access commonly used in the national survey and to have supplemen tal IAN data about the youth with ASD. HCT outcome variables. Four questions used within the 2005/2006 and 2009/2010 NS-CSHCN were used to obtain the caregiver’s response to each of the components of HCT services
and to determine if a participant received adequate HCT services(Kane et al., 2009). They are as follows: 1. Did the health care provider discuss making a transition to a provider who treats adults? 2. Did the health care provider discuss the changing health care needs that occur as a youth becomes an adult? 3. Did the health care provider discuss how to maintain health insurance coverage? 4. Does the health care provider encourage the youth to take age-appropriate responsibilities of his or her health care needs? After each of the first three questions, respondents were asked if the discussion were needed. Based on the combination of these questions, the possible response options for the three questions were coded as “needed and received,” “needed and not received,” and “not needed.” With regard to question one, if the youth currently had a health care provider who treats children and adults, the discussion was considered to be received. For the fourth question, respondents were able to indicate the frequency of en couragement (never, sometimes, usually, or always). Participants who answered yes to one of the first three questions and stated that their provider was usually or always encouraging on the fourth question met the HCT services criteria. If parents reported that none of the first three HCT discussions were needed, then the youth did not meet the core composite outcome even if appropriate responsibility was encouraged (n — 10) because this is the recom mended standard of care for all YSHCN (American Academy of Pediatrics et al., 2011; Holtz et al., 2006; Lotstein et al., 2009). Explanatory variables. Individual, family, and health system variables that have been associated with access to health care services within the YSHCN and/or ASD populations were in cluded in this analysis. As described in Table 1, individual char acteristics included gender, age, race/ethnicity, diagnosis, how the condition affects ability compared with peers (functional status), and physical health status. Family characteristics included mater nal education level, family structure, number living in the house hold, family income, insurance status, region of residence, and financial problems associated with caring for the youth. Access to a medical home, as defined in the 2005/2006 NS-CSHCN, was used to examine health system characteristics (Child and Adoles cent Health Measurement Initiative, 2009; Kane et al., 2009).
Data Analysis
Figure 1.
Participant enrollment.
Descriptive statistics were calculated to identify the sample characteristics and the proportion of youth with ASD that met the HCT services composite outcome and component items, analysis of variance (ANOVA) and chi-square tests for independence were used to examine the relationship between the individual, family and health system variables and the composite outcome and com ponent items. Specifically, ANOVAs were used when comparing continuous variables (age and number of people living in the household), and chi-square tests were used when examining all other categorical or dichotomous variables to the composite out come and component items. For significant models with multiple categories, post hoc least significant difference tests and z tests were performed to determine which means or column percentages were significantly different from one another.
TRANSITION SERVICES FOR YOUTH WITH ASD
Table 1 Characteristics o f Youth With ASD Demographic variables Age (M = 14.60 years, SD = 1.61) Younger (12-14.49 years) Older (14.50-17.99 years) Gender (male) Race/ethnicity (minority) Diagnosis Autism Asperger’s syndrome PDD-NOS Autism diagnosis, unspecified Family structure (single-parent home) Annual family income
Rehabilitation Psychology 2014, Vol. 59, No. 3, 340-348
Health Care Transition Services for Youth With Autism Spectrum Disorders Nancy C. Cheak-Zamora, Janet E. Fanner, Wayne A. Mayfield, and Mary J. Clark
Alison R. Marvin Kennedy Krieger Institute, Baltimore, MD
University of Missouri
J. Kiely Law and Paul A. Law Kennedy Krieger Institute, Baltimore, MD, and Johns Hopkins University School of Medicine Objective: Little is known about accessibility to health care transition (HCT) services (HCT) for youth with autism spectrum disorders (ASD). This study examined how often youth with ASD receive HCT services and how access varied by individual, family, and health system characteristics. Method: Questionnaires were completed by 101 parents of youth with ASD (ages 12-17 years) enrolled in a national online autism registry. Descriptive statistics and bivariate analysis were used to examine a composite HCT variable and its components. Results: Fewer than 15% of youth received HCT services. Although 41% received at least 1 HCT discussion, only 3% received all 3. One-quarter had a discussion with their health care provider about transitioning to an adult provider, adult health care needs, or insurance retention, and 31% of providers encouraged youth to take on more responsibilities. Most caregivers reported not needing 1 or more of the discussions. Results varied significantly when the sample was divided by age, with older youth more likely to have received transition services than younger adolescents. Conclusions: These findings indicate a significant disparity in access to HCT services for youth with ASD. Further research is needed to understand this disparity and develop interventions to improve HCT both for youth with ASD and those with other disabling health conditions. Additionally, many caregivers do not recognize the importance of HCT services. Education and training for caregivers, youth, and providers is essential to ensure all parties are working together to address transition issues early and often. Keywords: autism spectrum disorder, adolescence, health care services, health care transition
about the need to address HCT issues early and often. Furthermore, they can advance research on ways to improve comprehensive and coordinated HCT services so that all youth can maximize their functional independence
Impact and Implications • Health care transitioning is a process that attends to the medical, psychological, social, and education/vocational needs of adolescents as
during adulthood.
they move from the child-focused to the adult-focused health care system. • This study shows that youth with ASD experience limited access to effective HCT services. Furthermore, their caregivers are often not fully aware of the need for HCT services. • Rehabilitation psychologists can contribute by educating providers, caregivers, and youth with ASD and those with other disabling conditions
Introduction Over 11 million children have a special health care need that is potentially disabling (Child and Adolescent Health Measurement Initiative, 2012). Ninety percent of these children will live into adulthood, which means that approximately 500,000 youth with special health care needs (YSHCN) make the transition from a pediatric health care provider to an adult-oriented provider each year (Reiss & Gibson, 2002). The need for health care transition (HCT) services for this population puts a strain on the health care system and YSHCN and their families. Youth with autism spectrum disorders (ASD) are an important subgroup of YSHCN because of their increasing numbers, high level of service needs, cost, and societal impact (Ganz & Ten dulkar, 2006). ASD is a complex disorder characterized by im pairments in verbal and nonverbal communication and social in teractions and restrictive or repetitive behaviors (Huerta, Bishop, Duncan, Hus, & Lord, 2012). HCT services are of the utmost importance to this group because in addition to their behavioral and communication difficulties, youth with ASD may have other comorbid psychiatric and medical conditions, such as anxiety/
This article was published Online First July 14, 2014. Nancy C. Cheak-Zamora, Department of Health Sciences, University of Missouri; Janet E. Farmer, Department of Health Psychology, University of Missouri; Wayne A. Mayfield, Office of Social and Economic Data Analysis, University of Missouri; Mary J. Clark, TE Atkins Wellness Program, University of Missouri; Alison R. Marvin, Department of Med ical Informatics, Kennedy Krieger Institute, Baltimore, MD; J. Kiely Law, Department of Medical Informatics, Kennedy Krieger Institute, and De partment of Pediatrics, Johns Hopkins University School of Medicine; Paul A. Law, Department of Medical Informatics, Kennedy Krieger Institute, and Department of Pediatrics, Johns Hopkins University School of Medi cine. Correspondence concerning this article should be addressed to Nancy C. Cheak-Zamora, PhD, 510 Clark Hall, University of Missouri, Columbia, MO 65211. E-mail: [email protected]
340
TRANSITION SERVICES FOR YOUTH WITH ASD
depression, seizures, gastrointestinal problems, and sleep distur bance (Coury, Jones, Klatka, Winklosky, & Perrin, 2009; Mazurek & Kanne, 2010). Nearly 50% of individuals with ASD have a major coexisting condition that requires regular medical attention (Billstedt, Gillberg, & Gillberg, 2005). This combination of devel opmental disability and comorbid conditions increases these indi viduals’ dependence on the health care system throughout all stages of life, making HCT services especially critical. The Society of Adolescent Health and Medicine describes tran sition as “a multifaceted, active process that attends to the medical, psychosocial, and educational/vocational needs of adolescents as they move from the child-focused to the adult-focused health care system” (Blum et al., 1993). Within HCT research, this is opera tionalized through the use of four basic questions asking caregivers of YSHCN if their doctors discussed the following: (a) shifting to an adult provider, (b) health care needs of adults, (c) health insurance retention, and (d) youth’s need to take on appropriate responsibility for his or her health care needs (Child and Adoles cent Health Measurement Initiative, 2012). Increased access to HCT planning is supported by major professional organizations and federal agencies serving YSHCN, including ASD (American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, Transitions Clinical Report Authoring Group, 2011). Pediatricians should initiate these dis cussions at 12 years of age with increased emphasis on their importance with each additional year (Holtz, Owings, & Ziegert, 2006; Lotstein et al., 2009). In actual practice, the extent to which YSHCN receive these HCT services is disturbingly low, with only 40-41% receiving HCT ser vices (Kane et al., 2009; Lotstein et al., 2009; McManus et al., 2013). Encouraging youth to take appropriate responsibility for their health care needs is most frequently delivered (78%), whereas discussions regarding health insurance retention were least likely to occur (3435%; Kane et al., 2009; Lotstein et al., 2009; McManus et al., 2013). Numerous individual- and family-related factors have been associated with receipt of adequate HCT services in YSHCN including the following: being female, being non-Hispanic Caucasian, living in a two-parent household, having health insurance, caregiver level of education and income, and child’s condition severity (Kane et al., 2009; Lotstein et al., 2009; McManus et al., 2013; Seal, Horvath, & Garwick, 2009). Most studies have found that older youth are more likely to receive transition services; however, McManus et al. (2013) found that being younger increased the likelihood of receiving HCT services. They note that this is likely caused by caregivers of young youth reporting not needing HCT services. This signals the need for further research to clarify the effect of age on the receipt of HCT services. Although multiple studies have examined accessibility to HCT services within the larger YSHCN population, only one study has examined these services in youth with ASD (Cheak-Zamora, Yang, Farmer, & Clark, 2013). This study indicated that youth with ASD receive HCT services far less often than other YSHCN, with only 21% of youth with ASD receiving such services. Similar disparities are seen within each component item because less than a quarter of youth with ASD receive any of the individual HCT discussions. Demographic factors associated with access to HCT services in youth with ASD were not consistent with factors identified in the larger group of YSHCN. Only race/ethnicity was
341
associated with HCT in youth with ASD, with those from Hispanic groups less likely to receive these services. The impact of the youth’s health condition was similar for YSHCN and youth with ASD in that youth with less complex health care conditions were more likely to receive HCT services than those with more complex conditions (Cheak-Zamora et al., 2013; Lotstein et al., 2009; McManus et al., 2013; Seal et al., 2009). Additionally, quality of the health care system was a factor in both groups. For YSHCN, parental report of satisfaction with care and the presence of a medical home increased the likelihood of receiving HCT services (Kane et al., 2009; Lotstein et al., 2009; McManus et al., 2013; Seal et al., 2009). For youth with ASD, parent-reported satisfaction with care and partnership in decision making were associated with receiving HCT services, but the presence of a medical home as defined in national surveys was not (Cheak-Zamora et al., 2013). This study did not examine factors that influence receipt of HCT services for youth with ASD within different age groups, it also did not shed light on caregivers’ perceptions about what individual components of HCT services are needed or not needed. Additional research is warranted so effective interventions can be designed to support youth with ASD during the transition to adulthood. Youth with ASD have an increased need for HCT services as a result of the combination of developmental disability and comorbid conditions. Unfortunately, few youth with ASD seem to receive these services, and only one study to date has examined this issue within this population. Because of their increased need, decreased access to care (ATC), and the paucity of research within this area, the purpose of our study is to extend previous research on HCT in youth with ASD using a sample selected from a national online autism research registry. Objectives included the following: (a) to investigate how often youth with ASD enrolled in the registry received adequate HCT services; (b) to conduct an analysis of the individual components of HCT services; and (c) to examine the impact of variables not previ ously investigated among youth with ASD (e.g., younger and older age groups, type of ASD diagnosis).
Method Data Source Participants were recruited from the Interactive Autism Network (IAN), an online, voluntary, United States-based autism registry that has enrolled more than 37,000 individuals (11,663 house holds) affected by ASD and their family members (Interactive Autism Network, 2011). Individuals with ASD under 18 years of age who received an ASD diagnosis from a professional are enrolled by a parent into the registry. Participants are recruited at diagnostic clinics, autism centers, doctors’ offices, other service providers, and community groups. Further, the IAN has a very large online and social media presence. IAN participants have access to the IAN community, which includes discussion boards, news and blog updates, access to aggregated state and national IAN data, access to all publications using IAN data, and notifica tions about additional (often paid) research studies. Although the IAN registry has a known bias toward families with higher income and education levels, the IAN is the largest pool of ASD data in the world and has been used in dozens of peer-reviewed journal articles (Interactive Autism Network, 2011).
CHEAK-ZAMORA ET AL.
342
The diagnosis of ASD in the IAN database has been clinically validated and verified by review of records in a subset of participants (Daniels et al., 2012; Lee et al., 2010). As part of a larger study, an ATC Questionnaire was sent by electronic mail to the caregivers of 2,393 children in the IAN registry on December 1, 2009 (Fanner et al., 2013). All study procedures were approved by the institutional review boards at the two universities involved in this project. As shown in Figure 1, the sample was restricted to families with youth 12 to 17 years of age with complete HCT information. Within the total sample, 600 of the 2,393 participants met the adolescent age requirement. Of these, 114 completed the question naire, resulting in a 19% response rate, which is typical for IAN online surveys. Thirteen respondents did not complete the HCT information. This yielded 101 eligible participants who were in cluded in the final analysis.
Measures Nearly all questions on the ATC Questionnaire were adapted with permission from the 2005/2006 National Survey of Children with Special Health Care Needs (NS-CSHCN) to identify unmet needs (Child and Adolescent Health Measurement Initiative, 2009). Addi tional questions requested information on family income, health in surance coverage, and child health status. Information from the IAN database (e.g., age, diagnostic category) was also included. This approach gave us a unique opportunity to examine questions about access commonly used in the national survey and to have supplemen tal IAN data about the youth with ASD. HCT outcome variables. Four questions used within the 2005/2006 and 2009/2010 NS-CSHCN were used to obtain the caregiver’s response to each of the components of HCT services
and to determine if a participant received adequate HCT services(Kane et al., 2009). They are as follows: 1. Did the health care provider discuss making a transition to a provider who treats adults? 2. Did the health care provider discuss the changing health care needs that occur as a youth becomes an adult? 3. Did the health care provider discuss how to maintain health insurance coverage? 4. Does the health care provider encourage the youth to take age-appropriate responsibilities of his or her health care needs? After each of the first three questions, respondents were asked if the discussion were needed. Based on the combination of these questions, the possible response options for the three questions were coded as “needed and received,” “needed and not received,” and “not needed.” With regard to question one, if the youth currently had a health care provider who treats children and adults, the discussion was considered to be received. For the fourth question, respondents were able to indicate the frequency of en couragement (never, sometimes, usually, or always). Participants who answered yes to one of the first three questions and stated that their provider was usually or always encouraging on the fourth question met the HCT services criteria. If parents reported that none of the first three HCT discussions were needed, then the youth did not meet the core composite outcome even if appropriate responsibility was encouraged (n — 10) because this is the recom mended standard of care for all YSHCN (American Academy of Pediatrics et al., 2011; Holtz et al., 2006; Lotstein et al., 2009). Explanatory variables. Individual, family, and health system variables that have been associated with access to health care services within the YSHCN and/or ASD populations were in cluded in this analysis. As described in Table 1, individual char acteristics included gender, age, race/ethnicity, diagnosis, how the condition affects ability compared with peers (functional status), and physical health status. Family characteristics included mater nal education level, family structure, number living in the house hold, family income, insurance status, region of residence, and financial problems associated with caring for the youth. Access to a medical home, as defined in the 2005/2006 NS-CSHCN, was used to examine health system characteristics (Child and Adoles cent Health Measurement Initiative, 2009; Kane et al., 2009).
Data Analysis
Figure 1.
Participant enrollment.
Descriptive statistics were calculated to identify the sample characteristics and the proportion of youth with ASD that met the HCT services composite outcome and component items, analysis of variance (ANOVA) and chi-square tests for independence were used to examine the relationship between the individual, family and health system variables and the composite outcome and com ponent items. Specifically, ANOVAs were used when comparing continuous variables (age and number of people living in the household), and chi-square tests were used when examining all other categorical or dichotomous variables to the composite out come and component items. For significant models with multiple categories, post hoc least significant difference tests and z tests were performed to determine which means or column percentages were significantly different from one another.
TRANSITION SERVICES FOR YOUTH WITH ASD
Table 1 Characteristics o f Youth With ASD Demographic variables Age (M = 14.60 years, SD = 1.61) Younger (12-14.49 years) Older (14.50-17.99 years) Gender (male) Race/ethnicity (minority) Diagnosis Autism Asperger’s syndrome PDD-NOS Autism diagnosis, unspecified Family structure (single-parent home) Annual family income
