512902 research-article2013
AUT18710.1177/1362361313512902AutismVohra et al.
Special Issue Article
Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions
Autism 2014, Vol. 18(7) 815–826 © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1362361313512902 aut.sagepub.com
Rini Vohra, Suresh Madhavan, Usha Sambamoorthi and Claire St Peter
Abstract This cross-sectional study examined perceived access to services, quality of care, and family impact reported by caregivers of children aged 3–17 years with autism spectrum disorders, as compared to caregivers of children with other developmental disabilities and other mental health conditions. The 2009–2010 National Survey of Children with Special Health Care Needs was utilized to examine the association between child’s special needs condition and three outcomes (N = 18,136): access to services (difficulty using services, difficulty getting referrals, lack of source of care, and inadequate insurance coverage), quality of care (lack of care coordination, lack of shared decision making, and no routine screening), and family impact (financial, employment, and time-related burden). Multivariate logistic regressions were performed to compare caregivers of children with autism spectrum disorders to caregivers of children with developmental disabilities (cerebral palsy, Down syndrome, developmental delay, or intellectual disability), mental health conditions (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression), or both developmental disabilities and mental health conditions. Caregivers of children with autism spectrum disorders were significantly more likely to report difficulty using services, lack of source of care, inadequate insurance coverage, lack of shared decision making and care coordination, and adverse family impact as compared to caregivers of children with developmental disabilities, mental health conditions, or both. Keywords Access to services, autism, autism spectrum disorder health care, burden of autism, developmental disabilities, family impact, mental health condition, quality of care
Introduction Prevalence of autism spectrum disorders (ASDs) has risen in the past decade by 78% (Centers for Disease Control and Prevention (CDC), 2012a), and currently 1 in 88 children in the United States has ASDs. ASD is associated with restrictive, repetitive, and stereotyped patterns of behavior along with functional and social impairments (American Psychiatric Association, 2000). ASD is also associated with extensive physical and neurological comorbidities (Joshi et al., 2010; Kohane et al., 2012; Levy et al., 2010) such as epilepsy, schizophrenia, cranial anomalies, inflammatory bowel disease, sleep disorders, and muscular dystrophy (Kohane et al., 2012; Maski et al., 2011). Some developmental disabilities (DDs) are particularly highly comorbid with ASDs. These specifically include conditions such as
cerebral palsy, intellectual disability (ID)/intellectual developmental disorders (IDD), Down syndrome, or developmental delay (CDC, 2012c). The prevalence of comorbid DDs in children with ASDs can be as high as 90% as compared to 82% for children with ID/IDD, 76% for children with developmental delay, and 51% for children with cerebral palsy (Boulet et al., 2009). Similarly, mental health West Virginia University, USA Corresponding author: Rini Vohra, Department of Pharmaceutical Systems and Policy, School of Pharmacy, West Virginia University, P.O. BOX 9510, Morgantown, WV 26505-9510, USA. Email: [email protected]
Downloaded from aut.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on February 12, 2015
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Autism 18(7)
conditions (MHCs) such as attention deficit hyperactivity disorder (ADHD; Furman, 2008), anxiety, behavioral/conduct problems, or depression have also been found to cooccur with ASDs (Stewart et al., 2006; White et al., 2009). Management of such complex and heterogeneous sets of DDs and MHCs in children with ASDs requires provision of services by multiple health-care professionals which may be challenging for the existing DD centers or clinics, a fact supported by many observational studies (Bitsko et al., 2009; Boulet et al., 2009; Krauss et al., 2003; Liptak et al., 2006a). Although symptoms of cognitive delay and sociobehavioral issues are common in children with ASDs, DDs, and MHCs, children with ASD are unique because of the developmental course of ASDs, their treatment, and management (Volkmar et al., 1999). Caregivers of children with ASDs may face different challenges due to a number of reasons: (1) the complexity of the disorder itself, which requires intensive pharmaco-therapeutic and behavioral interventions needing coordination among multiple educational and health-care providers (Volkmar et al., 1999); (2) extensive developmental and physical comorbidities (Boulet et al., 2009; Kohane et al., 2012; Levy et al., 2010) that need greater medication management and attention by the caregiver as well as the health-care providers; and (3) lack of “gold standard” or evidence base for wide array of pharmacological, biomedical, alternative treatment, and behavioral therapies used by caregivers of children with ASDs (Warren et al., 2011). In addition, the substantial out-of-pocket direct health-care costs and other indirect costs incurred by families of children with ASD also pose a significant financial burden on these families (CDC, 2012b; Kogan et al., 2008). The complexity of ASD and its impact on the family is evident in the reports of caregivers of children with ASDs; these caregivers have reported greater unmet needs (Chiri and Warfield, 2012; Siklos and Kerns, 2006), issues with access to services (Krauss et al., 2003; Ruble et al., 2005), and dissatisfaction with the quality of care provided (Montes et al., 2009; Spann et al., 2003) as compared to caregivers of children without ASDs. When compared to caregivers of children with DDs, some studies have also observed greater unmet needs (Cadman et al., 2012), problem accessing services (Boulet et al., 2009; Krauss et al., 2003), and poor quality of care (Liptak et al., 2006b) among caregivers of children with ASDs. Primary care physician referral to specialty providers and satisfaction with primary care physician services are also impacted by presence of ASDs. Ming et al. (2011) found that fewer children with ASDs received referrals for specialists from their primary care physicians than children with other neurologic disorders. Liptak et al. (2006a) examined perceptions of parents of children with DDs including ASDs about satisfaction with primary health care. They found that families of children with ASDs expressed greater
dissatisfaction with the communication and coordination of care among primary care physicians as compared to families of children with other DDs. Difficulties in accessing services, dissatisfaction with the service, and poor quality of health care may also lead to negative outlook. For example, families of children with ASDs were also found to be more negative in their comments about the services and were more likely to express unmet needs as compared to families of children with other DDs (Liptak et al., 2006a). Even among groups of children with special healthcare needs (CSHCN), caregivers of children with ASDs report greater unmet health-care needs. Using 2005–2006 National Survey of Children with Special Health Care Needs (NS-CSHCN) data, Kogan et al. (2008) compared the caregivers’ health-care experiences and family impact for children with ASDs to caregivers of other CSHCN and caregivers of children with emotional, developmental, and behavioral problems (EDBPs) to caregivers of other CSHCN. This study found that caregivers of children with ASDs and EDBPs are more likely to report poor experiences in accessing services, receiving familycentered care, and an adverse family impact as compared to caregivers of other CSHCN. Even though the study established a significant association between caregivers’ negative experiences and child’s special needs conditions, it lacked a comprehensive comparison between the ASD and EDBP groups. In addition, the study also did not compare issues reported by caregivers of children with ASDs to those reported by caregivers of children with multiple comorbid conditions such as both DDs/ MHCs. This study attempts to fill the knowledge gap by examining issues with access to services, quality of care, and family impact reported by caregivers of children with ASDs as compared to caregivers of children with DDs, MHCs, or both DDs/MHCs. Identifying health-care disparities across caregivers of children with ASDs and other special needs conditions such as DDs and MHCs will indicate differences in perceptions of caregiver needs and highlight the variations in the extent and type of healthcare needs of these children. Such differences, if they do exist, will help inform the health-care providers and policy makers in designing programs that may address core deficits in areas of services provision, care coordination, and shared decision making, leading to improvement in family outcomes for caregivers of children with ASDs, DDs, and MHCs. Due to the complex nature of ASDs, extensive comorbidity burden and health-care needs, and costs associated with the condition (CDC, 2012b), provision of care under the umbrella of DD networks may be inadequate. It is expected that caregivers of children with ASDs will be more likely to have poor access, poor quality of care, and adverse family impact, as compared to caregivers of children with DDs and MHCs.
Downloaded from aut.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on February 12, 2015
Vohra et al.
817
Methods
or delay in services due to lack of eligibility, availability of services, cost issues, problems getting information, getting appointments, or any other reasons?” Difficulty getting referrals was measured as a three-category variable and was derived from two questions “Did you need a referral?” and “Among those who needed a referral, whether getting referrals was a big problem, a small problem, or not a problem?” The three categories were as follows: (1) did not need a referral, (2) big/small problem, and (3) no problem. Lack of source of care was a binary indicator derived from yes/no responses to the question “Does the child lack a personal doctor/place for routine/sick care or did not receive all specialty care, when needed?” Inadequacy of health insurance was derived from the questions “Whether the child has a health insurance?” and “Does the insurance allow the child to see a provider or provide benefits that meet the child’s needs?” The variable was grouped into two categories: (1) no insurance/never/sometimes and (2) have insurance/usually/always.
Data source This study uses cross-sectional data from 2009–2010 NS-CSHCN, a computer-assisted random digit dial telephone survey with a complex multistage design representative of the US civilian noninstitutionalized population with children aged 0–17 years. The NS-CSHCN provides child- and household-level data on children with and without SHCN (Maternal and Child Health Bureau, Data Resource Center for Child & Adolescent Health, 2011). A total of 372,698 children were screened for SHCN in the 50 states and District of Columbia (DC) from 196,159 households. The analyses reported here are based on sample of children who were identified as CSHCN through the survey’s CSHCN screener (N = 40,242).
Study population All special needs children aged 3–17 years with a caregiver-reported current diagnosis of ASDs, DDs, MHCs, or both DDs/MHCs formed the sampled population. The final analytical sampled population (hereafter referred to as sample) was 18,136.
Measures Key independent variable Child’s special needs condition (ASD, DD, and MHC). ASD was identified from caregiver-reported confirmation to the question “Does the child currently have autism, Asperger’s disorder, pervasive developmental disorder, or other autism spectrum disorder?” Children with DDs consisted of those who had cerebral palsy, Down syndrome, developmental delay, or ID/IDD. Children with MHCs consisted of those who had ADHD, anxiety, behavioral/conduct problems, or depression. Based on ASD, DD, and MHC, we adapted the following hierarchical classification of special needs conditions: (1) ASD, (2) DD (without ASD or MHC), (3) MHC (without ASD or DD), and (4) both DD/MHC (without ASD). As evident from the classification, the ASD group included children with ASD alone (n = 372), ASD with DD (n = 694), MHC (n = 739), and both DD/MHC (n = 1220). Dependent variables Access to services. Access to services was assessed using four measures: difficulty using services, difficulty getting referrals, lack of source of care, and inadequacy of health insurance coverage. For this study, the services represent those offered by primary care providers, schools, hospital systems, other clinics/health centers, and any other relevant institution. Difficulty using services was measured as a binary variable using yes/no responses to the question “During the past year, have you had any difficulties using
Quality of care. The quality of care was assessed with three binary measures: lack of shared decision making, lack of care coordination, and lack of routine screening or wellchild visits. Lack of shared decision making was derived from the question “Did the health-care provider discuss, encourage/make it easy to ask questions, or respect your treatment choices?” and was grouped as (1) never/sometimes and (2) usually/always. Lack of care coordination was based on the question “Did you receive a family-centered care/received help from different providers (health care, educational, and other), and how satisfied were you with the communication between the different providers?” Lack of care coordination was grouped into (1) did not receive family-centered care/no help from health-care providers/somewhat dissatisfied/very dissatisfied with the communication and (2) received family-centered care/ help from provider/satisfied/somewhat satisfied with the communication. No routine screening was derived from the question “Number of times the child received a wellchild checkup, when he was not sick or injured?” and was grouped into two categories: (1) none and (2) one/more than one. Family impact. The impact of the special needs condition on the family was assessed using three measures of family burden due to child’s condition: financial burden, employment burden, and time-related burden. Financial burden was derived from two questions: “Whether family had financial problems due to child’s condition or the family paid US$5000, US$1000–US$5000, or less than US$1000 for child’s medical care in the past year, excluding health insurance premiums?” and categorized into two groups: (1) had financial problems/spent ≥US$1000 for child’s medical care and (2) no financial problems/paid
AUT18710.1177/1362361313512902AutismVohra et al.
Special Issue Article
Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions
Autism 2014, Vol. 18(7) 815–826 © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1362361313512902 aut.sagepub.com
Rini Vohra, Suresh Madhavan, Usha Sambamoorthi and Claire St Peter
Abstract This cross-sectional study examined perceived access to services, quality of care, and family impact reported by caregivers of children aged 3–17 years with autism spectrum disorders, as compared to caregivers of children with other developmental disabilities and other mental health conditions. The 2009–2010 National Survey of Children with Special Health Care Needs was utilized to examine the association between child’s special needs condition and three outcomes (N = 18,136): access to services (difficulty using services, difficulty getting referrals, lack of source of care, and inadequate insurance coverage), quality of care (lack of care coordination, lack of shared decision making, and no routine screening), and family impact (financial, employment, and time-related burden). Multivariate logistic regressions were performed to compare caregivers of children with autism spectrum disorders to caregivers of children with developmental disabilities (cerebral palsy, Down syndrome, developmental delay, or intellectual disability), mental health conditions (attention deficit hyperactivity disorder, anxiety, behavioral/conduct problems, or depression), or both developmental disabilities and mental health conditions. Caregivers of children with autism spectrum disorders were significantly more likely to report difficulty using services, lack of source of care, inadequate insurance coverage, lack of shared decision making and care coordination, and adverse family impact as compared to caregivers of children with developmental disabilities, mental health conditions, or both. Keywords Access to services, autism, autism spectrum disorder health care, burden of autism, developmental disabilities, family impact, mental health condition, quality of care
Introduction Prevalence of autism spectrum disorders (ASDs) has risen in the past decade by 78% (Centers for Disease Control and Prevention (CDC), 2012a), and currently 1 in 88 children in the United States has ASDs. ASD is associated with restrictive, repetitive, and stereotyped patterns of behavior along with functional and social impairments (American Psychiatric Association, 2000). ASD is also associated with extensive physical and neurological comorbidities (Joshi et al., 2010; Kohane et al., 2012; Levy et al., 2010) such as epilepsy, schizophrenia, cranial anomalies, inflammatory bowel disease, sleep disorders, and muscular dystrophy (Kohane et al., 2012; Maski et al., 2011). Some developmental disabilities (DDs) are particularly highly comorbid with ASDs. These specifically include conditions such as
cerebral palsy, intellectual disability (ID)/intellectual developmental disorders (IDD), Down syndrome, or developmental delay (CDC, 2012c). The prevalence of comorbid DDs in children with ASDs can be as high as 90% as compared to 82% for children with ID/IDD, 76% for children with developmental delay, and 51% for children with cerebral palsy (Boulet et al., 2009). Similarly, mental health West Virginia University, USA Corresponding author: Rini Vohra, Department of Pharmaceutical Systems and Policy, School of Pharmacy, West Virginia University, P.O. BOX 9510, Morgantown, WV 26505-9510, USA. Email: [email protected]
Downloaded from aut.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on February 12, 2015
816
Autism 18(7)
conditions (MHCs) such as attention deficit hyperactivity disorder (ADHD; Furman, 2008), anxiety, behavioral/conduct problems, or depression have also been found to cooccur with ASDs (Stewart et al., 2006; White et al., 2009). Management of such complex and heterogeneous sets of DDs and MHCs in children with ASDs requires provision of services by multiple health-care professionals which may be challenging for the existing DD centers or clinics, a fact supported by many observational studies (Bitsko et al., 2009; Boulet et al., 2009; Krauss et al., 2003; Liptak et al., 2006a). Although symptoms of cognitive delay and sociobehavioral issues are common in children with ASDs, DDs, and MHCs, children with ASD are unique because of the developmental course of ASDs, their treatment, and management (Volkmar et al., 1999). Caregivers of children with ASDs may face different challenges due to a number of reasons: (1) the complexity of the disorder itself, which requires intensive pharmaco-therapeutic and behavioral interventions needing coordination among multiple educational and health-care providers (Volkmar et al., 1999); (2) extensive developmental and physical comorbidities (Boulet et al., 2009; Kohane et al., 2012; Levy et al., 2010) that need greater medication management and attention by the caregiver as well as the health-care providers; and (3) lack of “gold standard” or evidence base for wide array of pharmacological, biomedical, alternative treatment, and behavioral therapies used by caregivers of children with ASDs (Warren et al., 2011). In addition, the substantial out-of-pocket direct health-care costs and other indirect costs incurred by families of children with ASD also pose a significant financial burden on these families (CDC, 2012b; Kogan et al., 2008). The complexity of ASD and its impact on the family is evident in the reports of caregivers of children with ASDs; these caregivers have reported greater unmet needs (Chiri and Warfield, 2012; Siklos and Kerns, 2006), issues with access to services (Krauss et al., 2003; Ruble et al., 2005), and dissatisfaction with the quality of care provided (Montes et al., 2009; Spann et al., 2003) as compared to caregivers of children without ASDs. When compared to caregivers of children with DDs, some studies have also observed greater unmet needs (Cadman et al., 2012), problem accessing services (Boulet et al., 2009; Krauss et al., 2003), and poor quality of care (Liptak et al., 2006b) among caregivers of children with ASDs. Primary care physician referral to specialty providers and satisfaction with primary care physician services are also impacted by presence of ASDs. Ming et al. (2011) found that fewer children with ASDs received referrals for specialists from their primary care physicians than children with other neurologic disorders. Liptak et al. (2006a) examined perceptions of parents of children with DDs including ASDs about satisfaction with primary health care. They found that families of children with ASDs expressed greater
dissatisfaction with the communication and coordination of care among primary care physicians as compared to families of children with other DDs. Difficulties in accessing services, dissatisfaction with the service, and poor quality of health care may also lead to negative outlook. For example, families of children with ASDs were also found to be more negative in their comments about the services and were more likely to express unmet needs as compared to families of children with other DDs (Liptak et al., 2006a). Even among groups of children with special healthcare needs (CSHCN), caregivers of children with ASDs report greater unmet health-care needs. Using 2005–2006 National Survey of Children with Special Health Care Needs (NS-CSHCN) data, Kogan et al. (2008) compared the caregivers’ health-care experiences and family impact for children with ASDs to caregivers of other CSHCN and caregivers of children with emotional, developmental, and behavioral problems (EDBPs) to caregivers of other CSHCN. This study found that caregivers of children with ASDs and EDBPs are more likely to report poor experiences in accessing services, receiving familycentered care, and an adverse family impact as compared to caregivers of other CSHCN. Even though the study established a significant association between caregivers’ negative experiences and child’s special needs conditions, it lacked a comprehensive comparison between the ASD and EDBP groups. In addition, the study also did not compare issues reported by caregivers of children with ASDs to those reported by caregivers of children with multiple comorbid conditions such as both DDs/ MHCs. This study attempts to fill the knowledge gap by examining issues with access to services, quality of care, and family impact reported by caregivers of children with ASDs as compared to caregivers of children with DDs, MHCs, or both DDs/MHCs. Identifying health-care disparities across caregivers of children with ASDs and other special needs conditions such as DDs and MHCs will indicate differences in perceptions of caregiver needs and highlight the variations in the extent and type of healthcare needs of these children. Such differences, if they do exist, will help inform the health-care providers and policy makers in designing programs that may address core deficits in areas of services provision, care coordination, and shared decision making, leading to improvement in family outcomes for caregivers of children with ASDs, DDs, and MHCs. Due to the complex nature of ASDs, extensive comorbidity burden and health-care needs, and costs associated with the condition (CDC, 2012b), provision of care under the umbrella of DD networks may be inadequate. It is expected that caregivers of children with ASDs will be more likely to have poor access, poor quality of care, and adverse family impact, as compared to caregivers of children with DDs and MHCs.
Downloaded from aut.sagepub.com at HOWARD UNIV UNDERGRAD LIBRARY on February 12, 2015
Vohra et al.
817
Methods
or delay in services due to lack of eligibility, availability of services, cost issues, problems getting information, getting appointments, or any other reasons?” Difficulty getting referrals was measured as a three-category variable and was derived from two questions “Did you need a referral?” and “Among those who needed a referral, whether getting referrals was a big problem, a small problem, or not a problem?” The three categories were as follows: (1) did not need a referral, (2) big/small problem, and (3) no problem. Lack of source of care was a binary indicator derived from yes/no responses to the question “Does the child lack a personal doctor/place for routine/sick care or did not receive all specialty care, when needed?” Inadequacy of health insurance was derived from the questions “Whether the child has a health insurance?” and “Does the insurance allow the child to see a provider or provide benefits that meet the child’s needs?” The variable was grouped into two categories: (1) no insurance/never/sometimes and (2) have insurance/usually/always.
Data source This study uses cross-sectional data from 2009–2010 NS-CSHCN, a computer-assisted random digit dial telephone survey with a complex multistage design representative of the US civilian noninstitutionalized population with children aged 0–17 years. The NS-CSHCN provides child- and household-level data on children with and without SHCN (Maternal and Child Health Bureau, Data Resource Center for Child & Adolescent Health, 2011). A total of 372,698 children were screened for SHCN in the 50 states and District of Columbia (DC) from 196,159 households. The analyses reported here are based on sample of children who were identified as CSHCN through the survey’s CSHCN screener (N = 40,242).
Study population All special needs children aged 3–17 years with a caregiver-reported current diagnosis of ASDs, DDs, MHCs, or both DDs/MHCs formed the sampled population. The final analytical sampled population (hereafter referred to as sample) was 18,136.
Measures Key independent variable Child’s special needs condition (ASD, DD, and MHC). ASD was identified from caregiver-reported confirmation to the question “Does the child currently have autism, Asperger’s disorder, pervasive developmental disorder, or other autism spectrum disorder?” Children with DDs consisted of those who had cerebral palsy, Down syndrome, developmental delay, or ID/IDD. Children with MHCs consisted of those who had ADHD, anxiety, behavioral/conduct problems, or depression. Based on ASD, DD, and MHC, we adapted the following hierarchical classification of special needs conditions: (1) ASD, (2) DD (without ASD or MHC), (3) MHC (without ASD or DD), and (4) both DD/MHC (without ASD). As evident from the classification, the ASD group included children with ASD alone (n = 372), ASD with DD (n = 694), MHC (n = 739), and both DD/MHC (n = 1220). Dependent variables Access to services. Access to services was assessed using four measures: difficulty using services, difficulty getting referrals, lack of source of care, and inadequacy of health insurance coverage. For this study, the services represent those offered by primary care providers, schools, hospital systems, other clinics/health centers, and any other relevant institution. Difficulty using services was measured as a binary variable using yes/no responses to the question “During the past year, have you had any difficulties using
Quality of care. The quality of care was assessed with three binary measures: lack of shared decision making, lack of care coordination, and lack of routine screening or wellchild visits. Lack of shared decision making was derived from the question “Did the health-care provider discuss, encourage/make it easy to ask questions, or respect your treatment choices?” and was grouped as (1) never/sometimes and (2) usually/always. Lack of care coordination was based on the question “Did you receive a family-centered care/received help from different providers (health care, educational, and other), and how satisfied were you with the communication between the different providers?” Lack of care coordination was grouped into (1) did not receive family-centered care/no help from health-care providers/somewhat dissatisfied/very dissatisfied with the communication and (2) received family-centered care/ help from provider/satisfied/somewhat satisfied with the communication. No routine screening was derived from the question “Number of times the child received a wellchild checkup, when he was not sick or injured?” and was grouped into two categories: (1) none and (2) one/more than one. Family impact. The impact of the special needs condition on the family was assessed using three measures of family burden due to child’s condition: financial burden, employment burden, and time-related burden. Financial burden was derived from two questions: “Whether family had financial problems due to child’s condition or the family paid US$5000, US$1000–US$5000, or less than US$1000 for child’s medical care in the past year, excluding health insurance premiums?” and categorized into two groups: (1) had financial problems/spent ≥US$1000 for child’s medical care and (2) no financial problems/paid
