Medical service utilization and costs of autism spectrum disorder: Evidence from hospital records in Beijing, China.

As more and more people are diagnosed with autism spectrum disorder (ASD), it is necessary to better understand their costs. Detailed information on medical service utilization and costs could aid in designing equitable, effective policies to support individuals with ASD and their families. In this retrospective analysis, individuals with a hospital encounter (outpatient visit or inpatient admission) were collected from Beijing Municipal Health Big Data and Policy Research Center (BMHBD), from January 1, 2017 to December 31, 2021. We analyzed the costs, hospital visits/admissions and their changing trends over 5 years. Poisson regression and logit regression were conducted to analyze the influencing factors of visits, admissions and costs. The study population consisted of 26,826 users of medical services (26,583 outpatients and 243 inpatients; mean age: 4.82 ± 3.47 years for outpatients; 11.62 ± 6.74 years for inpatients). 99.1% were outpatients (mean ± standard deviation (SD) costs per year: $422.06 ± $11.89), while 0.9% were inpatients (mean ± SD costs per year: $4411.71 ± $925.81). More than 50% of outpatients received medication and diagnostic testing services. Among those with an inpatient admission, 91% received treatment services. Medication costs were the major contributor to medical costs for adults. Diagnostic test and treatment costs were the major contributors for children and adolescents. The findings demonstrated a significant economic burden for those diagnosed with ASD and highlighted opportunities for improving the care of this vulnerable group. This study adds to the literature by focusing on age differences among health-care utilization in individuals with ASD.

The Association of the Medicaid 1915(c) Home and Community-Based Services Waivers with Emergency Department Utilization among Youth with Autism Spectrum Disorder.

Using the 2008-2013 Medicaid Analytic eXtract files, this retrospective cohort study was to evaluate the effect of Medicaid home and community-based services (HCBS) waiver programs on emergency department (ED) utilizations among youth with autism spectrum disorder (ASD). Our study showed that the annual ED utilization rates were 13.5% and 18.8% for individuals on autism specific and intellectual and developmental disabilities (IDD) waivers respectively, vs. 28.5% for those without a waiver. Multivariable logistic regression showed that, compared to no waiver, autism specific waivers (adjusted odds ratio: 0.62; 95% Confidence Interval: [0.58-0.66]) and IDD waivers (0.65; [0.64-0.66]) were strongly associated with reduced ED. These findings suggest that HCBS waivers are effective in reducing the incidence of ED visits among youth with ASD.

States' use of Medicaid to meet the needs of autistic individuals.

OBJECTIVE: To assess the use of Medicaid programs, including waivers, to address the needs of aging autistic individuals. DATA SOURCES: We gathered data on Medicaid programs in place between 2004 and 2015 for 50 states and the District of Columbia from the Centers for Medicare and Medicaid Services website, by contacting state Medicaid administrators and advocacy groups, and by reviewing the Medicaid Analytic eXtract Waiver Crosswalk. STUDY DESIGN: This retrospective analysis classified each Medicaid program and documented state changes over time in eligibility criteria: those serving autism spectrum disorder only, autism spectrum disorder or intellectual disability, and intellectual disability only. DATA COLLECTION/EXTRACTION METHODS: We captured age and diagnosis eligibility criteria for Medicaid programs serving any of the three target groups. PRINCIPAL FINDINGS: A total of 269 Medicaid programs met our criteria and most programs (51%) were 1915(c) waivers. The number of autism-specific 1915(c) waivers grew more than fivefold during the study period, outpacing increases in waivers serving individuals with intellectual disability. CONCLUSIONS: States varied in their use of Medicaid to address the needs of the aging autism population. Further study of characteristics of states that changed their Medicaid programs, and of the health care use and outcomes associated with these changes, are needed to identify opportunities to replicate effective approaches to meeting the needs of this population.

Medication Use in the Management of Comorbidities Among Individuals With Autism Spectrum Disorder From a Large Nationwide Insurance Database.

Importance: Although there is no pharmacological treatment for autism spectrum disorder (ASD) itself, behavioral and pharmacological therapies have been used to address its symptoms and common comorbidities. A better understanding of the medications used to manage comorbid conditions in this growing population is critical; however, most previous efforts have been limited in size, duration, and lack of broad representation. Objective: To use a nationally representative database to uncover trends in the prevalence of co-occurring conditions and medication use in the management of symptoms and comorbidities over time among US individuals with ASD. Design, Setting, and Participants: This retrospective, population-based cohort study mined a nationwide, managed health plan claims database containing more than 86 million unique members. Data from January 1, 2014, to December 31, 2019, were used to analyze prescription frequency and diagnoses of comorbidities. A total of 26 722 individuals with ASD who had been prescribed at least 1 of 24 medications most commonly prescribed to treat ASD symptoms or comorbidities during the 6-year study period were included in the analysis. Exposures: Diagnosis codes for ASD based on International Classification of Diseases, Ninth Revision, and International Statistical Classification of Diseases and Related Health Problems, Tenth Revision. Main Outcomes and Measures: Quantitative estimates of prescription frequency for the 24 most commonly prescribed medications among the study cohort and the most common comorbidities associated with each medication in this population. Results: Among the 26 722 individuals with ASD included in the analysis (77.7% male; mean [SD] age, 14.45 [9.40] years), polypharmacy was common, ranging from 28.6% to 31.5%. Individuals' prescription regimens changed frequently within medication classes, rather than between classes. The prescription frequency of a specific medication varied considerably, depending on the coexisting diagnosis of a given comorbidity. Of the 24 medications assessed, 15 were associated with at least a 15% prevalence of a mood disorder, and 11 were associated with at least a 15% prevalence of attention-deficit/hyperactivity disorder. For patients taking antipsychotics, the 2 most common comorbidities were combined type attention-deficit/hyperactivity disorder (11.6%-17.8%) and anxiety disorder (13.1%-30.1%). Conclusions and Relevance: This study demonstrated considerable variability and transiency in the use of prescription medications by US clinicians to manage symptoms and comorbidities associated with ASD. These findings support the importance of early and ongoing surveillance of patients with ASD and co-occurring conditions and offer clinicians insight on the targeted therapies most commonly used to manage co-occurring conditions. Future research and policy efforts are critical to assess the extent to which pharmacological management of comorbidities affects quality of life and functioning in patients with ASD while continuing to optimize clinical guidelines, to ensure effective care for this growing population.

Healthcare Costs of Pediatric Autism Spectrum Disorder in the United States, 2003-2015.

Published healthcare cost estimates for children with autism spectrum disorder (ASD) vary widely. One possible contributor is different methods of case ascertainment. In this study, ASD case status was determined using two sources of parent reports among 45,944 children ages 3-17 years in the Medical Expenditure Panel Survey (MEPS) linked to the National Health Interview Survey (NHIS) Sample Child Core questionnaire. In a two-part regression model, the incremental annual per-child cost of ASD relative to no ASD diagnosis was $3930 (2018 US dollars) using ASD case status from the NHIS Child Core and $5621 using current-year ASD case status from MEPS. Both estimates are lower than some published estimates but still represent substantial costs to the US healthcare system.

Trends Over a Decade in NIH Funding for Autism Spectrum Disorder Services Research.

Investments in autism spectrum disorder (ASD) research, guided by the Interagency Autism Coordinating Committee (IACC), have focused disproportionately on etiology over a well-established stakeholder priority area: research to improve accessibility and quality of community-based services. This study analyzed National Institutes of Health ASD services research funding from 2008 to 2018 to examine funding patterns, evaluate the impact of IACC objectives, and identify future directions. Approximately 9% of total funds were allocated to services research. This investment remained relatively stable across time and lacked diversity across domains (e.g., area of focus, ages sampled, implementation strategies used). While advancements were observed, including increased prevalence of projects focused on adult samples and on dissemination/implementation and prevention areas, greater investment in service research is critically needed.

Characterization of Family-Directed Care Coordination and Involvement in Behavioral Treatments in an Autism-Specific Medicaid Waiver.

Services for children with autism spectrum disorder (ASD) and their families have evolved with the advent of the Medicaid waiver, leading to more family-based coordination of care. Evaluating family involvement, the current investigation compared 230 families of children with ASD receiving Medicaid waiver services to a propensity-score matched group of 230 families who were waiting for such services (i.e., registry families). Compared to the registry, waiver families reported more involvement in service planning tasks, but not activities related to future-planning, managing crisis situations, or searching for and securing funding. Additional analyses characterize waiver families as engaging in high levels of coordinating and delivering behavioral interventions for their child. Implications for family burden and future programming for waiver programs are discussed.

Employment Outcomes After a Birth of a Child with a Developmental Disability: A National Nested Case-Control Study.

Using records from the National Insurance Institute of Israel, we recognized all children with autism spectrum disorders (ASD, N = 8072) or hearing loss (HL, N = 2231) born in Israel between 2005 and 2010. Typical developed children were taken from a random 20% sample of children born during the same years (N = 227,492). Analyses were adjusted for year of birth, population group, parental ages, parental education, child birth order and peripherality. Working women, who gave birth to children with either ASD or HL, were at increased risk of not maintaining their working status over the 5 years after birth. There is a decreased ratio between household wage after and before birth, in families with children with either ASD or HL.

Systematic Review of Disparities and Differences in the Access and Use of Allied Health Services Amongst Children with Autism Spectrum Disorders.

Individuals with autism spectrum disorder (ASD) often benefit from allied health services such as occupational therapy, speech and language pathology, and applied behavioral analysis. While there is consistent evidence of disparities in access and use of medical services (e.g. dentistry), no such systematic review has examined disparities and differences in allied health use amongst children with ASD. In this systematic review, we examine disparities and differences in service access and use for children with ASD. Our findings suggest that children who are older, have less severe ASD symptoms, are from minority groups, and those from particular geographic regions are less likely to receive allied health services. Limitations and future directions are discussed.

Brief Report: Socioeconomic Factors Associated with Minimally Verbal Status in Individuals with ASD.

About 30% of adults with autism are minimally verbal. Past research suggested that after age five, few gain verbal fluency, but studies have rarely investigated whether family environmental factors contribute to the acquisition of verbal fluency. The present study utilized data from the Autism Diagnostic Interview-Revised to compare changes in verbal fluency for 404 individuals with autism from childhood to adolescence and adulthood. Socioeconomic factors were examined across fluency groups (i.e., those who did/did not achieve verbal fluency). Findings indicated that fully 60% of those who were minimally verbal in early childhood acquired verbal fluency in adolescence and adulthood. Parent socioeconomic status differed across fluency groups, suggesting the importance of environmental factors for individual development.

Brief Report: Classifying Rates of Students with Autism and Intellectual Disability in North Carolina: Roles of Race and Economic Disadvantage.

We examined special education classifications among students aged 3-21 in North Carolina public schools, highlighting autism spectrum disorder (ASD) and intellectual disability (ID). Results revealed variability by county in ASD and ID prevalence, and in county-level ratios of ID vs. ASD classifications. Sociodemographic characteristics predicted proportion of ASD or ID within a county; correlations showed an association between race and ID, but not ASD. County's median household income predicted proportion of students classified as ASD and ID (opposite directions), controlling for number of students and gender. Variability was unlikely related to biological incidence, and more likely related to district/school practices, or differences in resources. Disparities warrant further examination to ensure that North Carolina's youth with disabilities access necessary, appropriate resources.

Autism Insurance Mandates in the US: Comparison of Mandated Commercial Insurance Benefits Across States.

INTRODUCTION: Autism mandates are laws that require commercial insurers to cover certain evidence-based treatments for Autism Spectrum Disorder (ASD). The purpose of this study was to review state variability in autism insurance mandates and the benefits they cover and to discuss recommendations for research and policy to improve ASD services across states. METHODS: Data were extracted from 2001 to 2020 from all 50 states plus the District of Columbia (N = 51) from policy text. News articles and websites of ASD advocacy organizations were also reviewed to ensure inclusion of the most recent policy changes. Descriptive statistics and heatmaps were used to characterize the autism mandate landscape and visualize variability in benefit parameters across states. RESULTS: Autism mandates vary greatly in benefit parameters across US states, but there is a common set of benefits that most states have adopted. These include coverage of provider-recommended ASD services except for medical equipment, coverage up to an age limit of 18 to 21, an annual dollar limit of $36,000 with no restriction on the number of hours or visits, no lifetime cap on benefits, and requirement of BCBA® certification or its equivalent for providers of ABA. DISCUSSION: There is a need for continued research evaluating the impact of autism mandates and benefit parameters on access to care, service utilization, and clinical outcomes for the ASD population. Stakeholder engagement and understanding the impact of autism mandates on clinical and patient-centered outcomes may provide direction for policy advocacy and public health initiatives.

Primary care of children with autism spectrum disorders: Developing confident healthcare leaders.

This series of articles aims to equip primary care providers (PCPs) with the tools to become healthcare leaders managing patients with pediatric autism spectrum disorder (ASD). Individuals with ASD can experience optimal health outcomes when timely, evidence-based interventions are implemented in the primary care setting. PCPs are uniquely situated to institute changes that redirect the trajectory of ASD.

Prevalence and Economic Burden of Autism Spectrum Disorder in South Korea Using National Health Insurance Data from 2008 to 2015.

The prevalence of autism spectrum disorder (ASD) is increasing worldwide. We investigated the economic burden of ASD in South Korea using a nationally representative data source. The direct medical and non-medical costs, and indirect costs resulting from ASD were estimated. The total prevalence was 5.04 (per 100,000) in 2008, and 10.97 in 2015. The economic cost of ASD was estimated to be $2,700,596 in 2008 and $9,645,503 in 2015. Of the total economic cost in 2015, 72.3% was from direct costs and 27.7% from indirect costs, and 87.5% related to male patients and 12.5% to female patients. The results suggest that the increase in economic costs was greater than the increase in prevalence.

A Comparison of Health Care Expenditures for Medicaid-Insured Children with Autism Spectrum Disorder and Asthma in an Expanding Accountable Care Organization.

As value-based care continues to expand, more children with autism spectrum disorder (ASD) will be treated by accountable care organizations (ACOs), provider organizations seeking to improve population health while reducing costs. To inform ACO strategies for children with ASD, this study compared health care expenditures of children insured by a Medicaid managed care organization, empaneled to a safety net ACO, with ASD, asthma, and neither diagnosis. Compared to other study groups, children with ASD were more costly, had lower rates of acute care, and had higher rates of "leaked" care provided by home- and community-based mental health agencies outside of the ACO. These findings highlight the need for unique value-based strategies for children with ASD in a public sector ACO.

Comparing Neighborhoods of Children With Autism Spectrum Disorder in a Medicaid Waiver Program and a State Population, 2007-2015.

OBJECTIVE: This study investigated equity in enrollment in a Medicaid waiver program for early intensive behavioral intervention for children with autism spectrum disorder (ASD). METHODS: State administrative, Medicaid, and U.S. Census data for children enrolled in the waiver program between 2007 and 2015 (N=2,111) were integrated. Multivariate and bivariate analyses were used to compare enrollees' neighborhood demographic characteristics with those of the state's general population, with controls for enrollees' age, sex, and race-ethnicity. RESULTS: Findings indicate that in general, enrollment was equitable. During the years in which there were inequities, children who lived in neighborhoods of privilege were favored. These neighborhoods had higher median incomes, lower poverty levels, and fewer female-headed households and were located in urban areas. CONCLUSIONS: As states work to provide equitable treatment to children with ASD and their families, it is important to track potential inequities between children who do and do not enroll in services and to use this information to inform outreach efforts. States may turn to South Carolina for insight on how to ensure equity.

Safety, effectiveness, and economic evaluation of an herbal medicine, Ukgansangajinpibanha granule, in children with autism spectrum disorder: a study protocol for a prospective, multicenter, randomized, double-blinded, placebo-controlled, parallel-group clinical trial.

BACKGROUND: Autism spectrum disorder (ASD) is characterized by continuous impairment in communication and social interaction and by limited and repetitive behaviors, interests, or activities. Behavioral, educational, and pharmaceutical interventions have been shown to reduce behavioral disabilities, improve verbal/non-verbal communication, and help patients acquire self-reliance skills. However, there has been a lack of systematic verification and consensus regarding the treatment of the core symptoms of ASD because of its unclear etiology. Ukgansangajinpibanha (UGSJB), a legitimately prescribed herbal medicine for nervousness, insomnia, night crying, and malnutrition in South Korea and Japan, has been used for angry, sensitive, nervous, and unsettled children with ASD. METHODS/DESIGN: This trial is a prospective, multicenter, randomized, double-blinded, placebo-controlled, parallel-group, clinical trial. The 4- to 6-year-old children with ASD will be randomly assigned to following groups: 1. A UGSJB granule with acupuncture, twice daily (n = 120) 2. A placebo group with acupuncture, twice daily (n = 120). The following outcome measures will be used: behavior by the Childhood Autism Rating Scale, Autism Behavior Checklist, and Aberrant Behavior Checklist; social maturity by the Social Maturity Scale; quality of life by the Child Health Questionnaire and EuroQoL Five-dimension Five-level Youth; and parental stress by the Parenting Stress Index at baseline and at 6, 12, and 24 weeks after the beginning of treatment. In addition, to evaluate safety, we will investigate the adverse reactions that may be caused by UGSJB granule. Finally, we will make an economic evaluation of UGSJB for the treatment of ASD. DISCUSSION: We prepared a well-designed clinical trial to investigate the safety and effectiveness of UGSJB on ASD symptoms compared with placebo treatment. The results from this study will provide clinical evidence on the safety, effectiveness, and economic value of UGSJB combined with acupuncture in children with ASD. TRIAL REGISTRATION: Clinical Research Information Service: KCT0003007 (registered on April 5, 2018).

Effect of Outpatient Service Utilization on Hospitalizations and Emergency Visits Among Youths With Autism Spectrum Disorder.

OBJECTIVE: Psychiatric hospitalizations and emergency department (ED) visits occur more frequently for youths with autism spectrum disorder (ASD). One mechanism that may reduce the likelihood of these events is utilization of home and community-based care. Using commercial claims data and a rigorous analytical framework, this retrospective study examined whether spending on outpatient services for ASD, including occupational, physical, and speech therapies and other behavioral interventions, reduced the likelihood of psychiatric hospitalizations and ED visits. METHODS: The study sample was composed of >100,000 children and young adults with ASD and commercial insurance from every state between 2008 and 2012. The authors estimated maximum-likelihood complementary log-log link survival models with robust standard errors. The outcomes of interest were a hospitalization or an ED visit with an associated psychiatric diagnosis code (ICD-9-CM 290 through 319) in a given week. RESULTS: An increase of $125 in weekly spending on ASD-specific outpatient services in the 7 to 14 weeks prior to a given week reduced the likelihood of a psychiatric hospitalization in that week by 2%. ASD-specific outpatient spending during the 6 weeks prior to a psychiatric hospitalization did not decrease risk of hospitalization. Spending on ASD-specific outpatient services did not reduce the likelihood of a psychiatric ED visit. CONCLUSIONS: The financial burden associated with ASD is extensive, and psychiatric hospitalizations remain the most expensive type of care, costing more than $4,000 per week on average. Identifying the mechanisms by which psychiatric hospitalizations occur may reduce the likelihood of these events.

Emergency department utilization and monetary charges in adolescents with autism spectrum disorder, intellectual disability, and a population comparison group.

Adolescents with autism spectrum disorder (ASD) and/or intellectual disability (ID) may utilize the emergency department (ED) more frequently than individuals in the general population. This study compared ED utilization and charges during adolescence among four groups of individuals: ASD-only, ASD + ID, ID-only, and a population comparison (PC) group. ED visits occurring during age 12-17 years were examined to identify non, low, and high utilizers. Logistic regression was used to compare groups on the odds of having at least one ED visit during adolescence. Generalized linear models were used to compare groups on number of ED visits and total charges, stratified by low and high ED utilization. Descriptive examination of presenting diagnoses was performed. Individuals with ID, with or without co-occurring ASD, were significantly more likely to have at least one ED visit during adolescence. Among high ED utilizers, the ID-only group had the most frequent ED visits but had significantly lower charges than the ASD-only group. Individuals with ASD-only and ASD + ID differed from the ID-only and PC groups in presenting diagnoses. No differences between groups in number of ED visits or charges were observed among low utilizers. ID, with or without ASD, increased the odds of visiting the ED during adolescence. Adolescents with ID-only had the most frequent ED visits, but individuals with ASD-only had the highest ED charges and tended to be seen for psychiatric concerns. Further research is warranted to better characterize and meet the healthcare needs of individuals with ASD and/or ID during adolescence. Autism Res 2019, 12: 1129-1138. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Frequent emergency department (ED) visits strain medical resources and are costlier than primary and urgent care. Our findings show that adolescents with intellectual disability (ID) may use the ED frequently for nonurgent conditions. Adolescents with autism spectrum disorder, without ID, use the ED less frequently but incur higher charges. Further research is needed to understand how to meet the unique needs of these populations in primary care to prevent overuse of the ED.

State Mandate Laws for Autism Coverage and High-Deductible Health Plans.

OBJECTIVES: Most states have passed insurance mandates requiring health plans to cover services for children with autism spectrum disorder (ASD). Research reveals that these mandates increased treated prevalence, service use, and spending on ASD-related care. As employer-sponsored insurance shifts toward high-deductible health plans (HDHPs), it is important to understand how mandates affect children with ASD in HDHPs relative to traditional, low-deductible plans. METHODS: Insurance claims for 2008-2012 for children covered by 3 large US insurers (United Healthcare, Aetna, and Humana) available through the Health Care Cost Institute were used to compare the effects of mandates on ASD-related spending for children in HDHPs and traditional health plans. RESULTS: Relative to children in traditional plans, mandates were associated with higher average monthly spending increases for children in HDHPs. Mandate-attributable spending differences between children enrolled in HDHPs relative to traditional plans were $77 for ASD-specific services (95% confidence interval [CI]: $10 to $144), $125 for outpatient health services (95% CI: $26 to $223), and $144 for all health services (95% CI: $36 to $253). These spending differentials were driven by differences in plan spending and not out-of-pocket (OOP) spending. CONCLUSIONS: Spending on ASD-related services attributable to autism mandates was higher among children in HDHPs, but higher spending did not translate into a greater OOP burden. For families with consistently high health care expenditures on ASD-related services, high-deductible products may be worth considering in the context of mandate laws. Families in mandate states with children with ASD enrolled in HDHPs were able to increase service use without paying more OOP.