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Elevated caregiver strain is common and linked to poor health in parents of children with autism. Yet, little research has examined caregiver strain longitudinally and in geographically diverse samples of parents whose children have autism. This study aimed to (1) examine change in caregiver strain and (2) determine correlates of improved caregiver strain in North American parents of children with autism. This was a secondary analysis of data from the Autism Treatment Network Registry Call-Back Study, conducted from 2015 to 2017 on a random sample of children with autism spectrum disorder at 12 clinical sites in the United States or Canada. Child assessments and parent-reported questionnaires were completed at two time points 1 year apart. Caregiver strain was assessed with the Caregiver Strain Questionnaire. In total, 368 children had caregiver strain data at both times. Mean caregiver strain in parents did not significantly change between Times 1 and 2 (mean difference = 0.05, t(360) = 0.1, p = 0.92). Improved caregiver strain between Times 1 and 2 was associated with improved child adaptive functioning and externalizing problem behaviors. Caregiver strain was persistent and multi-factorial. Parent training to manage challenging child behaviors and adaptively cope may benefit this vulnerable parent population.

Children with autism spectrum disorder have a high risk of vision problems yet little is known about their vision care. This cross-sectional survey study, therefore, examined vision care among 351 children with autism spectrum disorder ages 6-17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Vision care variables were vision tested with pictures, shapes, or letters in the past 2 years; vision tested by an eye care practitioner (e.g. ophthalmologist, optometrist) in the past 2 years; prescribed corrective eyeglasses; and wore eyeglasses as recommended. Covariates included sociodemographic, child functioning, and family functioning variables. Multivariable models were fit for each vision care variable. Though 78% of children with autism spectrum disorder had their vision tested, only 57% had an eye care practitioner test their vision in the past 2 years. Among the 30% of children with autism spectrum disorder prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Multivariable analysis results demonstrated statistically significant differences in vision care among children with autism spectrum disorder by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism spectrum disorder do not receive recommended vision care and highlight potentially modifiable disparities in vision care.

Communication between a child's health care provider, child care and other community providers (cross-system communication) may facilitate access and referral to early intervention (EI). This study examined (a) factors associated with cross-system communication and (b) whether cross-system communication was associated with receiving EI among U.S. toddlers ages 1 to 2 years. This study used data from the National Survey of Children's Health 2016 and included 1,184 children of ages 1 to 2 years, whose parents indicated a need for cross-system communication. Dependent variable was having an EI plan. Primary independent variable was cross-system communication. Children who had cross-system communication had almost three times (2.9) higher odds of receiving EI services as compared to those who did not have cross-system communication (odds ratio [OR] = 2.9, 95% confidence interval [CI] = 1.2, 6.9, p =.014). This study found that cross-system communication was associated with receiving EI services for U.S. children of ages 1 to 2 years. [ABSTRACT FROM AUTHOR]

Little is known about how parent health literacy contributes to health-related outcomes for children with autism. This mixed-methods study included 82 U.S. parents of a child with autism 2–5 years-old and sought to describe (1) health literacy dimensions, (2) how health literacy influences services use, and (3) health literacy improvement strategies. Results showed: autism information was accessed from multiple sources; understanding autism information involved "doing your own research"; autism information empowered decision-making; health literacy facilitated behavioral services use; health literacy influenced medication use; family and system characteristics also affected services use; autism education remains needed; services information is needed across the diagnostic odyssey; and greater scientific information accessibility would increase uptake. Findings demonstrate how parent health literacy affects services use. [ABSTRACT FROM AUTHOR]

Children with autism spectrum disorder have a high risk of vision problems yet little is known about their vision care. This cross-sectional survey study, therefore, examined vision care among 351 children with autism spectrum disorder ages 6–17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Vision care variables were vision tested with pictures, shapes, or letters in the past 2 years; vision tested by an eye care practitioner (e.g. ophthalmologist, optometrist) in the past 2 years; prescribed corrective eyeglasses; and wore eyeglasses as recommended. Covariates included sociodemographic, child functioning, and family functioning variables. Multivariable models were fit for each vision care variable. Though 78% of children with autism spectrum disorder had their vision tested, only 57% had an eye care practitioner test their vision in the past 2 years. Among the 30% of children with autism spectrum disorder prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Multivariable analysis results demonstrated statistically significant differences in vision care among children with autism spectrum disorder by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism spectrum disorder do not receive recommended vision care and highlight potentially modifiable disparities in vision care. Children with autism are at high risk for vision problems, which may compound core social and behavioral symptoms if untreated. Despite recommendations for school-aged children with autism to receive routine vision testing by an eye care practitioner (ophthalmologist or optometrist), little is known about their vision care. This study, therefore, examined vision care among 351 children with autism ages 6–17 years in the United States or Canada who were enrolled in the Autism Treatment Network Registry. Parents were surveyed using the following vision care measures: (1) child's vision was tested with pictures, shapes, or letters in the past 2 years; (2) child's vision was tested by an eye care practitioner in the past 2 years; (3) child was prescribed corrective eyeglasses; and (4) child wore eyeglasses as recommended. Sociodemographic characteristics such as parent education level, child functioning characteristics such as child communication abilities, and family functioning characteristics such as caregiver strain were also assessed in relationship to vision care. Although 78% of children with autism had their vision tested, only 57% had an eye care practitioner test their vision in the past 2 years. Among the 30% of children with autism prescribed corrective eyeglasses, 78% wore their eyeglasses as recommended. Differences in vision care were additionally found among children with autism by parent education, household income, communication abilities, intellectual functioning, and caregiver strain. Overall, study results suggest many school-aged children with autism do not receive recommended vision care and highlight potentially modifiable disparities in vision care. [ABSTRACT FROM AUTHOR]

BACKGROUND AND OBJECTIVES: Use of specific services may help to optimize health for children with autism spectrum disorder (ASD); however, little is known about their service use patterns. We aimed to (1) define service use groups and (2) determine associations of sociodemographic, developmental, behavioral, and health characteristics with service use groups among school-aged children with ASD. METHODS: We analyzed cross-sectional data on 1378 children aged 6 to 18 years with an ASD diagnosis from the Autism Speaks Autism Treatment Network registry for 2008-2015, which included 16 US sites and 2 Canadian sites. Thirteen service use indicators spanning behavioral and medical treatments (eg, developmental therapy, psychotropic medications, and special diets) were examined. Latent class analysis was used to identify groups of children with similar service use patterns. RESULTS: By using latent class analysis, school-aged children with ASD were placed into 4 service use classes: limited services (12.0%), multimodal services (36.4%), predominantly educational and/or behavioral services (42.6%), or predominantly special diets and/or natural products (9.0%). Multivariable analysis results revealed that compared with children in the educational and/or behavioral services class, those in the multimodal services class had greater ASD severity and more externalizing behavior problems, those in the limited services class were older and had less ASD severity, and those in the special diets and/or natural products class had higher income and poorer quality of life. CONCLUSIONS: In this study, we identified 4 service use groups among school-aged children with ASD that may be related to certain sociodemographic, developmental, behavioral, and health characteristics. Study findings may be used to better support providers and families in decision-making about ASD services. [ABSTRACT FROM AUTHOR]

This study aimed to determine associations of healthcare access problems with services use among US children with autism spectrum disorder. We analyzed 2011–2014 National Health Interview Survey data on 651 children with autism spectrum disorder aged 2–17 years. There were three measures of healthcare access problems: (1) delays accessing healthcare, (2) difficulty affording healthcare, and (3) trouble finding a primary care provider. There were five service use measures: (1) ⩾4 office visits, (2) ⩾1 well-child visit, (3) flu vaccine, (4) prescription medication, and (5) ⩾1 emergency department visit. Multivariable regression models estimated associations of ⩾1 healthcare access problem with each service use variable and effect modification by socioeconomic status and race and ethnicity. Twenty-nine percent of children with autism spectrum disorder had ⩾1 healthcare access problem. Having ⩾1 healthcare access problem was associated with lower adjusted odds of ⩾1 well-child visit or prescription medication use but higher adjusted odds of ⩾4 office visits or ⩾1 emergency department visit. No significant association was found for flu vaccine. Associations of healthcare access problems with emergency department use were most pronounced for higher socioeconomic status and White, non-Hispanic subgroups. Intervention, such as insurance expansion, is needed to improve healthcare access for children with autism spectrum disorder. [ABSTRACT FROM AUTHOR]

The 5.1million US children with attention-deficit/hyperactivity disorder (ADHD) have pronounced needs in education, occupational and speech therapy, and medical and behavioral treatments. Given known associations of ADHD diagnosis with race/ethnicity and parent education, this study aimed to assess how measures of socioeconomic status correlate with both adverse family financial impact of ADHD and disparities in unmet treatment need for ADHD. Secondary analysis of children ages 8 to 17years whose households participated in the 2014 National Survey of the Diagnosis and Treatment of Attention-Deficit/Hyperactivity Disorder and Tourette Syndrome. Using bivariate testing, we examined associations among measures of socioeconomic status with unmet ADHD treatment need and family financial impact. Logistic regression models estimated the odds of having unmet treatment need, adjusting for demographic factors and family financial impact. Among US school-aged children with a current ADHD diagnosis, 44.3% experienced an adverse family financial impact from ADHD, and 11.6% had unmet need for ADHD treatment. Children with younger age at first ADHD diagnosis were more likely to experience adverse family financial impact. Children from non-English-speaking households were less likely to report unmet need compared to those from primarily English-speaking households. The adjusted odds of unmet need were twice as great among those who reported adverse family financial impact. Deeper understanding of the influence of the household language is important in ADHD needs assessments. Considering overall family financial circumstances may also be pertinent, particularly as children age, because earlier diagnosiswas associated with adverse financial outcomes. These findings could shape future clinic policies for targeting community resources. [ABSTRACT FROM AUTHOR]

OBJECTIVES: To compare barriers to autism spectrum disorder (ASD) diagnosis and current ASD-related service use among non-Latino white (NLW) families and Latino families with English proficiency (L-EP) or limited English proficiency (L-LEP). METHODS: We conducted a mixed-mode survey of families of children with confirmed ASD seen at specialty clinics in 3 United States cities. Bivariate and multivariate analyses compared barriers to ASD diagnosis, current service use, and unmet therapy need among NLW, L-EP, and L-LEP families. RESULTS: Overall, barriers to ASD diagnosis were prevalent: families (n = 352) experienced a mean of 8 of 15 barriers to ASD diagnosis. The most prevalent barriers overall were "stress of diagnostic process," "parent knowledge about ASD," and "understanding medical system." Compared with NLW families, L-LEP families were more likely to experience barriers related to knowledge about ASD and trust in providers. Children in L-LEP families also had fewer current therapy hours and more unmet therapy needs than children in NLW families. L-EP families' barriers and treatment services use profile was more similar to NLW than to L-LEP families. CONCLUSIONS: English proficiency was an important marker for barriers to ASD diagnosis and treatment in Latinos. Increasing ASD-related knowledge and provider trust may decrease disparities in the diagnosis and treatment of ASD among US Latinos. [ABSTRACT FROM AUTHOR]

Objectives: To estimate (1) family-centered care (FCC) and shared decision-making (SDM) prevalence, and (2) associations of FCC and SDM (FCC/SDM) with health care outcomes among U.S. children.Data Source: The Medical Expenditure Panel Survey Household Component (MEPS-HC), a nationally representative survey of the noninstitutionalized, civilian population.Study Design: Secondary analyses of prospectively collected data on 15,764 U.S. children were conducted to examine FCC/SDM prevalence in year 1 and associations of FCC/SDM in year 1 with health services utilization, medical expenditures, and unmet health care needs in year 2.Data Collection/extraction Methods: We combined four MEPS-HC longitudinal files from 2007 to 2011.Principal Findings: FCC/SDM prevalence in year 1 varied from 38.6 to 93.7 percent, and it was lower for composites with more stringent scoring approaches. FCC/SDM composites with stringent scoring approaches in year 1 were associated with reduced unmet needs in year 2. FCC/SDM, across all year 1 composites, was not associated with health services utilization or medical expenditures in year 2. FCC/SDM year 1 subcomponents describing consensus building and mutual agreement were consistently associated with unmet health care needs in year 2.Conclusions: FCC/SDM composites with stringent scoring approaches measuring consensus building and mutual agreement may have the greatest utility for pediatric health care quality improvement efforts. [ABSTRACT FROM AUTHOR]

To inform Oregon's Title V needs assessment activities, we aimed to (1) characterize the state's subpopulation of children with special health care needs (CSHCN) with behavioral and mental health conditions (B/MHC) and (2) determine associations of care coordination with missed school days and unmet needs for this subpopulation. We analyzed 2009-2010 National Survey of Children with Special Health Care Needs data on 736 Oregon CSHCN < 18 years, including 418 CSHCN with B/MHC. Among Oregon CSHCN with B/MHC: 48.9% missed ≥ 4 school days, 25% had ≥ 1 unmet health services need, and 14.8% had ≥ 1 unmet family support services need. Care coordination was associated with lower adjusted odds of ≥ 1 unmet health services need but was not significantly associated with missed school days or unmet family support services need. The approach to identify Oregon CSHCN with B/MHC may be adopted by other states endeavoring to improve health for this vulnerable subpopulation.

Objective: Family-centered care (FCC), including shared decision making (SDM), has become increasingly emphasized in pediatric health care delivery. Past studies using national surveys have used different FCC measurement approaches without determining their validity. We, therefore, sought to develop an FCC measurement model with Medical Expenditure Panel Survey (MEPS) items previously used to assess FCC or SDM; and to determine temporal associations of FCC with unmet health care need., Methods: Four longitudinal MEPS data files (2007-2011) were combined. The study sample included 15,764 US children aged 0 to 17 years. Eight items assessed FCC, and 5 items assessed unmet health care need. We performed exploratory factor analyses to develop an FCC measurement model and fit a cross-lagged structural equation model to determine temporal associations between FCC and unmet health care need., Results: Results supported a 2-factor FCC model including family-provider communication and SDM. The family-provider communication factor was indicated by items reflecting general communication between the child's doctor and family. The SDM factor was indicated by items reflecting decision-making about the child's health care. Adjusted cross-lagged structural equation model results showed family-provider communication and SDM were associated with a reduced likelihood of unmet health care need the following year. Unmet health care need was not significantly associated with family-provider communication or SDM the subsequent year., Conclusions: Study results support differentiating between family-provider communication and SDM as interrelated aspects of FCC in future pediatric health care quality measurement and improvement. Family-provider communication and SDM may reduce the likelihood of unmet health care need the following year among US children., (Copyright © 2016 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Objective: To examine the relationship between ease of access to needed community-based services (ease of access) and educational services receipt, and variation in educational services receipt by sociodemographic and need factors among a nationally representative sample of children with autism spectrum disorder (ASD), developmental delay (DD), and/or intellectual disability (ID)., Methods: Data from the 2009-2010 National Survey of Children with Special Health Care Needs were linked to the 2011 Survey of Pathways to Diagnosis and Services on a sample of 3502 US children aged 6 to 17 years with ASD, DD, and/or ID. Descriptive statistics, chi-square tests, and multivariable logistic regression models were used to determine associations of educational services receipt with ease of access and sociodemographic and need factors., Results: Among children with developmental conditions, nearly half (49.7%) lacked easy access to services, and 16.9% did not have an individualized education program (IEP). Among children with an IEP, those with ease of access were more likely to have an IEP that addressed parent concerns about the child's development and education than those unable to easily access services (adjusted odds ratio 2.77; 95% confidence interval 1.71-4.49). Need factors, including functional limitations status, care coordination need, developmental condition type, and early intervention receipt, were significantly associated with educational services receipt., Conclusions: Cross-systems initiatives facilitating service access remain important to ensuring the developmental needs of children with ASD, DD, and/or ID are met. Increased interprofessional collaboration promoting quality educational services receipt for children diagnosed with developmental conditions may further reduce disparities., (Copyright © 2015 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Objective: To compare health care quality and family employment and financial impacts among children with special health care needs (CSHCN) with autism spectrum disorder (CSHCN + ASD), CSHCN with functional limitations (CSHCN + FL), and CSHCN lacking these conditions (other CSHCN); to test whether high health care quality was associated with reduced family impacts among CSHCN + ASD., Methods: Data from the 2009-2010 National Survey of CSHCN were used to compare 3025 CSHCN + ASD, 6505 CSHCN + FL, and 28,296 other CSHCN. Weighted multivariate logistic regression analyses examined 6 age-relevant, federally defined health care quality indicators and 5 family financial and employment impact indicators. Two composite measures were additionally used: 1) receipt of care that met all age-relevant quality indicators; and 2) had ≥ 2 of the 5 adverse family impacts., Results: Across all health care quality indicators, CSHCN + ASD fared poorly, with only 7.4% meeting all age-relevant indicators. CSHCN + ASD had worse health care quality than other CSHCN, including CSHCN + FL. CSHCN + ASD also had high rates of adverse family impact, with over half experiencing ≥ 2 adverse impacts. Rates of adverse family impact were higher in CSHCN + ASD than other CSHCN, including CSHCN + FL. Among CSHCN + ASD, those whose health care that met federal quality standards were less likely to have multiple adverse family impacts than CSHCN + ASD whose health care did not meet federal quality standards., Conclusions: CSHCN + ASD are more prone to experience poor health care quality and family impacts than other CSHCN, even CSHCN + FL. Receipt of care meeting federal quality standards may potentially lessen adverse family impacts for CSHCN + ASD., (Copyright © 2014 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)