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BACKGROUND: We previously found that autistic adults who received care through a primary care embedded specialized clinic, called the Center for Autism Services and Transition (CAST), had higher satisfaction, continuity of care, and preventive care use than national samples of autistic adults. OBJECTIVE: Examine the impact of CAST on healthcare utilization and expenditures. DESIGN: Retrospective study of medical billing data. SAMPLE: CAST patients (N = 490) were propensity score matched to Medicare-enrolled autistic adults (N = 980) and privately insured autistic adults (N = 980) using demographic characteristics. The median age of subjects was 21 years, 79% were male, and the median duration of observation was 2.2 years. MAIN MEASURES: We quantified expenditures and utilization for primary care; emergency department (ED) visits; inpatient hospitalizations; mental health admissions; and outpatient visits. KEY RESULTS: CAST patients had the highest primary care utilization and expenditures. However, CAST patients had significantly lower expenditures than Medicare-enrolled autistic adults for mental health admissions ($1074 vs $1903), outpatient visits ($1671 vs $2979), and total expenditures ($5893 vs $6987), as well as 57% fewer inpatient hospitalizations. Compared to privately insured autistic adults, CAST patients had significantly lower expenditures for mental health admissions ($1074 vs $1362), inpatient hospitalizations ($3851 vs $4513), and outpatient visits ($1671 vs $6070), as well as 16% fewer inpatient hospitalizations, 24% fewer ED visits, and 50% fewer outpatient visits. On average, CAST patients had more ED visits, mental health admissions, and outpatient visits than Medicare-enrolled autistic adults and more mental health admissions than privately insured autistic adults. CONCLUSIONS: Although CAST patients had greater primary care utilization and expenditures, our findings suggest embedding specialized clinics within broader primary care settings could be an alternative to current standards of care and may reduce expenditures and healthcare utilization in other areas, particularly relative to standard care for privately insured autistic adults.
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Transtorno Autístico , Gastos em Saúde , Adulto , Idoso , Transtorno Autístico/epidemiologia , Transtorno Autístico/terapia , Feminino , Hospitalização , Humanos , Masculino , Medicare , Aceitação pelo Paciente de Cuidados de Saúde , Atenção Primária à Saúde , Estudos Retrospectivos , Estados Unidos/epidemiologia , Adulto JovemRESUMO
BACKGROUND: While in some studies, the patient-centered medical home has been linked with increased receipt of preventive services among other populations, there is a paucity of literature testing the effectiveness of medical homes in serving the healthcare needs of autistic adults. OBJECTIVE: To compare the receipt of preventive services by patients at a patient-centered medical home specifically designed for autistic adults (called the Center for Autism Services and Transition "CAST") to US national samples of autistic adults with private insurance or Medicare. DESIGN: Retrospective study of medical billing data. SAMPLE: The study sample included CAST patients (N = 490) who were propensity score matched to Medicare-enrolled autistic adults (N = 980) and privately insured autistic adults (N = 980) using demographic characteristics. The median age of subjects was 21 years old, 79% were male, and the median duration of observation was 2.2 years. MAIN MEASURES: The primary outcome measure was the receipt of any preventive service, as defined by the Medicare Learning Network and AAPC (formerly the American Academy of Professional Coders). Secondary outcome measures included receipt of specific preventive service types (i.e., general health and wellness services, screenings, counseling and therapies, vaccinations, and sexual/reproductive health services). KEY RESULTS: CAST patients had significantly greater odds of receiving any preventive service than Medicare-enrolled (OR = 10.3; 95% CI = 7.6-13.9) and privately insured (OR = 3.1; 95% CI = 2.3-4.2) autistic adults. CAST patients were also significantly more likely to receive screenings and vaccinations than either Medicare beneficiaries (screenings OR = 20.3; 95% CI = 14.7-28.0; vaccinations OR = 5.5; 95% CI = 4.3-7.0) or privately insured beneficiaries (screenings OR = 2.0; 95% CI = 1.6-2.5; vaccinations OR = 3.3; 95% CI = 2.6-4.1). CONCLUSIONS: Autistic adults receiving care through CAST were significantly more likely to recieve preventive care services than national samples of autistic adults. Future comparative effectiveness trials are needed to rigorously assess the impact of primary care-based initiatives to improve care for autistic adults.
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Transtorno Autístico , Adulto , Idoso , Transtorno Autístico/diagnóstico , Transtorno Autístico/epidemiologia , Transtorno Autístico/terapia , Humanos , Masculino , Medicare , Serviços Preventivos de Saúde , Atenção Primária à Saúde , Estudos Retrospectivos , Estados Unidos/epidemiologia , Adulto JovemRESUMO
Background: Children born preterm are at increased risk of autism spectrum disorder (ASD). n-3 (ω-3) Combined with n-6 (ω-6) fatty acids including γ-linolenic acid (GLA) may benefit children born preterm showing early signs of ASD. Previous trials have reported that docosahexaenoic acid (DHA) promotes cognitive development in preterm neonates and n-3 fatty acids combined with GLA improve attention-deficit-hyperactivity disorder. Objectives: The objectives of the pilot Preemie Tots Trial were 1) to confirm the feasibility of a full-scale trial in toddlers born very preterm and exhibiting ASD symptoms and 2) to explore the effects of supplementation on parent-reported ASD symptoms and related behaviors. Methods: This was a 90-d randomized, fully blinded, placebo-controlled trial in 31 children 18-38 mo of age who were born at ≤29 wk of gestation. One group was assigned to daily Omega-3-6-9 Junior (Nordic Naturals, Inc.) treatment (including 338 mg eicosapentaenoic acid, 225 mg DHA, and 83 mg GLA), and the other group received canola oil (124 mg palmitic acid, 39 mg stearic acid, 513 mg linoleic acid, 225 mg α-linolenic acid, and 1346 mg oleic acid). Mixed-effects regression analyses followed intent-to-treat analysis and explored effects on parent-reported ASD symptoms and related behaviors. Results: Of 31 children randomly assigned, 28 had complete outcome data. After accounting for baseline scores, those assigned to treatment exhibited a greater reduction in ASD symptoms per the Brief Infant Toddler Social Emotional Assessment ASD scale than did those assigned to placebo (difference in change = - 2.1 points; 95% CI: - 4.1, - 0.2 points; standardized effect size = - 0.71). No other outcome measure reflected a similar magnitude or a significant effect. Conclusions: This pilot trial confirmed adequate numbers of children enrolled and participated fully in the trial. No safety concerns were noted. It also found clinically-significant improvements in ASD symptoms for children randomly assigned to receive Omega-3-6-9 Junior, but effects were confined to one subscale. A future full-scale trial is warranted given the lack of effective treatments for this population. This trial was registered at www.clinicaltrials.gov as NCT01683565.
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Transtorno do Espectro Autista/prevenção & controle , Ácidos Graxos Ômega-3/administração & dosagem , Ácidos Graxos Ômega-6/administração & dosagem , Comportamento Infantil , Pré-Escolar , Cognição , Suplementos Nutricionais , Ácidos Docosa-Hexaenoicos/administração & dosagem , Ácidos Docosa-Hexaenoicos/sangue , Ácido Eicosapentaenoico/administração & dosagem , Ácido Eicosapentaenoico/sangue , Ácidos Graxos Ômega-3/efeitos adversos , Ácidos Graxos Ômega-6/efeitos adversos , Feminino , Seguimentos , Idade Gestacional , Humanos , Lactente , Recém-Nascido Prematuro , Masculino , Projetos Piloto , Placebos , Fatores de Risco , Resultado do Tratamento , Ácido gama-Linolênico/administração & dosagem , Ácido gama-Linolênico/sangueRESUMO
INTRODUCTION: Amphetamine preparations are one of the two categories of stimulant medications approved for the treatment of attention deficit hyperactivity disorder (ADHD). Optimal treatment of ADHD aims to reduce core symptoms for as much of the waking hours as possible, leading to longer-acting delivery formats. In addition, the pediatric population commonly has difficulty swallowing pills and manufacturers have developed a variety of options to facilitate this concern. These include chewable tablets, capsules that may be sprinkled on soft food, liquids and transdermal patches. AREAS COVERED: This article reviews the once-daily extended-release preparations currently available for amphetamine compounds, their pharmacodynamics, and common adverse effects. EXPERT OPINION: There is an extensive evidence base supporting use of amphetamine preparations in the treatment of ADHD. Rapid onset of action and a favorable side effect profile make these widely used. The availability of once-daily extended-release chewable tablets, capsules that can be opened and sprinkled, and liquid formulations provides clinicians with multiple options to meet the specific needs of patients with difficulty swallowing whole pills.
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Transtorno do Deficit de Atenção com Hiperatividade , Estimulantes do Sistema Nervoso Central , Metilfenidato , Humanos , Criança , Transtorno do Deficit de Atenção com Hiperatividade/tratamento farmacológico , Anfetamina/uso terapêutico , Estimulantes do Sistema Nervoso Central/uso terapêutico , Metilfenidato/uso terapêutico , Preparações de Ação Retardada/uso terapêutico , Comprimidos/uso terapêuticoRESUMO
INTRODUCTION: Attention deficit/hyperactivity disorder (ADHD) is a common behavioral disorder which is best treated through a combination of medication and behavioral therapy, with stimulant medications serving as a first-line treatment approach. Serdexmethylphenidate (SDX), a prodrug of dexmethylphenidate (d-MPH), a commonly utilized stimulant medication, has recently received approval and is marketed in the U.S.A. AREAS COVERED: This review summarizes peer-reviewed literature on SDX published between 2021-2023 and a review of data available from ClinicalTrials.gov. EXPERT OPINION: SDX represents a new option for treatment for ADHD. It is unique in its prodrug design and achieves a relatively extended duration of action in comparison to other stimulant formulations. Although the research is relatively limited thus far, early data suggests it to be a safe medication to consider with side effects being similar to other stimulant medications. Its prodrug design is useful in potentially serving as a deterrent to intentional parenteral abuse and its ability to be opened and sprinkled makes it an option for those individuals with ADHD who might be unable to swallow pills.
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Transtorno do Deficit de Atenção com Hiperatividade , Estimulantes do Sistema Nervoso Central , Cloridrato de Dexmetilfenidato , Metilfenidato , Pró-Fármacos , Humanos , Transtorno do Deficit de Atenção com Hiperatividade/tratamento farmacológico , Estimulantes do Sistema Nervoso Central/efeitos adversos , Cloridrato de Dexmetilfenidato/efeitos adversos , Pró-Fármacos/efeitos adversos , Metilfenidato/efeitos adversosRESUMO
OBJECTIVE: To compare dental utilization and expenditures between children with and without behavioral health (BH) diagnoses in an accountable care organization. METHODS: This retrospective cohort study used enrollment and claims data of Medicaid-enrolled children in Ohio. Children with 7 years of continuous enrollment from 2013 to 2019 were included. We calculated 5 dental utilization outcomes: 1) Diagnostic only visits, 2) Preventive visits, 3) Treatment visits, 4) Treatment visits under general anesthesia (GA), and 5) Orthodontic visits. Total 7-year cumulative expenditures were calculated for each outcome. Multivariable logistic regression models were run for each outcome adjusting for demographics and medical comorbidities. RESULTS: Among 77,962 children, 23% had ≥1 BH diagnosis. No utilization differences were noted between children with and without BH for diagnostic only visits, treatment visits, and orthodontic visits. BH status modified the likelihood of having a preventive visit and dental GA visits based on medical comorbidity. For example, children with BH diagnoses had significantly lower odds of a preventive visit (eg, non-complex chronic comorbidity: odds ratio [OR] = 0.87, 95% confidence interval [CI]: 0.85-0.89), and significantly higher odds of a dental treatment under general anesthesia visit (eg, non-chronic comorbidity: OR = 3.69, 95% CI: 3.26-4.18). The total cumulative dental expenditures were $10.5M greater for children with BH. CONCLUSIONS: Children with BH diagnoses were significantly less likely to have preventive visits and more likely to have dental GA visits, which was expensive. Early identification and intervention could alter treatment approaches, improve care, reduce risk of harm, and achieve cost-savings within a pediatric accountable care organization.
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Gastos em Saúde , Medicaid , Estados Unidos , Criança , Humanos , Estudos Retrospectivos , Medição de Risco , Ohio , Assistência OdontológicaRESUMO
Children with autism spectrum disorder (ASD) report high rates of sleep problems. In 2012, the Autism Treatment Network/ Autism Intervention Research Network on Physical Health (ATN/AIR-P) Sleep Committee developed a pathway to address these concerns. Since its publication, ATN/AIR-P clinicians and parents have identified night wakings as a refractory problem unaddressed by the pathway. We reviewed the existing literature and identified 76 scholarly articles that provided data on night waking in children with ASD. Based on the available literature, we propose an updated practice pathway to identify and treat night wakings in children with ASD.
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PURPOSE: Previous studies in the dental traumatology literature have proposed an association between incidence of dental trauma and attention deficit/hyperactivity disorder (ADHD). The purpose of this study was to evaluate the incidence of comorbid dental trauma and ADHD in children presenting for both trauma-related and routine dental care. METHODS: An Institutional Review Board-approved case group series study examined both populations using the attention deficit hyperactivity disorder rating scale IV (ARS). RESULTS: Data were collected from 161 children. There were no differences in overall ARS score or in the inattentiveness subscale. Children with a confirmed recent history of dental trauma did score higher on the hyperactivity/impulsivity subscale (P<.001). There was no difference in subjects scoring above the 90th percentile on the ARS based on group. CONCLUSION: Children presenting with dental trauma scored a higher baseline level of hyperactivity/impulsivity.
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Transtorno do Deficit de Atenção com Hiperatividade/complicações , Traumatismos Dentários/complicações , Adolescente , Criança , Comorbidade , Humanos , Comportamento Impulsivo/complicações , Estudos Prospectivos , Testes Psicológicos , Fraturas dos Dentes/complicaçõesRESUMO
BACKGROUND: Children born extremely preterm disproportionately experience sequelae of preterm birth compared to those born at later gestational ages, including higher prevalence of autism spectrum disorder (ASD) and associated behaviors. AIM: Explore effects of combined dietary docosahexaenoic acid, eicosapentaenoic acid, gamma-linolenic acid, and oleic acid (omega 3-6-9) on caregiver-reported behavior and sleep in toddlers born at ≤29 weeks' gestation who were exhibiting symptoms commonly seen with ASD. STUDY DESIGN: 90-day randomized (1:1), double blinded, placebo-controlled trial. SUBJECTS: Thirty-one children aged 18-38 months received omega 3-6-9 (n = 15) or canola oil placebo (n = 16). OUTCOME MEASURES: Mixed effects regression analyses followed intent to treat and explored treatment effects on measures of caregiver-reported behavior (Child Behavior Checklist 1.5-5, Toddler Behavior Assessment Questionnaire - Short Form, Vineland Adaptive Behavior Scales, 2nd Edition) and sleep (Children's Sleep Habits Questionnaire, Brief Infant Sleep Questionnaire). RESULTS: Twenty-nine of 31 (94%; ntx = 13, nplacebo = 16) children randomized had data available for at least one outcome measure, 27 (87%; ntx = 12, nplacebo = 15) had complete outcome data. Children randomized to omega 3-6-9 experienced a medium magnitude benefit of supplementation on anxious and depressed behaviors (ΔDifference = -1.27, d = -0.58, p = 0.049) and internalizing behaviors (ΔDifference = -3.41, d = -0.68, p = 0.05); and a large magnitude benefit on interpersonal relationship adaptive behaviors (ΔDifference = 7.50, d = 0.83, p = 0.01), compared to placebo. No effects were observed on other aspects of behavior or sleep. CONCLUSIONS: Findings provide preliminary support for further exploration of omega 3-6-9 during toddlerhood to improve socioemotional outcomes among children born preterm, especially for those showing early symptoms commonly seen with ASD. Results need to be replicated in a larger sample. TRIAL REGISTRATION: Registered with ClinicalTrials.gov: NCT01683565.
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Transtorno do Espectro Autista , Transtorno Autístico , Ácidos Graxos Ômega-3 , Nascimento Prematuro , Transtorno do Espectro Autista/tratamento farmacológico , Pré-Escolar , Suplementos Nutricionais , Ácidos Docosa-Hexaenoicos , Método Duplo-Cego , Ácidos Graxos Ômega-3/uso terapêutico , Feminino , Humanos , Lactente , Recém-Nascido , Recém-Nascido Prematuro , SonoRESUMO
This double-blind, randomized controlled trial, tested fatty acid (FA) supplementation in children (ages 2- < 6 years) recently diagnosed with Autism Spectrum Disorder (ASD). Participants received daily oral FA supplement containing omega-3 and omega-6 FA, or a placebo for 90 days based on participant weight. Erythrocyte FAs and the cytokines, IL-1ß, IL-2, IFNγ, were measured in plasma obtained from serial blood collections. Treatment increased omega-3 and omega-6 FA levels (1.40 mol% for EPA and 1.62 mol% for DHA) and reduced IL-2 levels compared to placebo (- 0.17 pg/mL, 95% CI - 0.31, - 0.02, d = - 0.62). Omega 3-6 treatment was tolerable and adherence was greater than 70%. Future research will assess the effects of Omega 3-6 treatment on ASD symptoms. Registered on 06/08/2018 with ClinicalTrials.gov: NCT03550209.
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Transtorno do Espectro Autista , Ácidos Graxos Ômega-3 , Ácidos Graxos Ômega-6 , Criança , Pré-Escolar , Humanos , Transtorno do Espectro Autista/tratamento farmacológico , Biomarcadores , Suplementos Nutricionais , Método Duplo-Cego , Ácidos Graxos Ômega-3/uso terapêutico , Ácidos Graxos Ômega-6/uso terapêutico , Interleucina-2/metabolismoRESUMO
OBJECTIVE: Children with autism spectrum disorder (ASD) have difficulty participating in dental care and experience significant unmet dental needs. We examined the efficacy of parent training (PT) for improving oral hygiene and oral health in underserved children with ASD. METHOD: Families of Medicaid-eligible children with ASD (ages 3-13 years, 85% boys, 62% with intellectual disability) reporting difficulty with dental care participated in a 6-month randomized controlled trial comparing PT (n = 60) with a psychoeducational dental toolkit (n = 59). Primary outcomes were parent-reported frequency of twice-daily toothbrushing and dentist-rated visible plaque. Secondary outcomes included parent-reported child behavior problems during home oral hygiene and dentist-rated caries. Dentists were blind to intervention assignment. Analyses were intention to treat. RESULTS: Retention was high at posttreatment (3 months, 93%) and 6-month follow-up (90%). Compared with the toolkit intervention, PT was associated with increased twice-daily toothbrushing at 3 (78% vs 55%, respectively; P < .001) and 6 (78% vs 62%; P = .002) months and a reduction in plaque at 3 months (intervention effect, -0.19; 95% confidence interval [CI], -0.36 to -0.02; P = .03) and child problem behaviors at 3 (-0.90; 95% CI, -1.52 to -0.28; P = .005) and 6 (-0.77; 95% CI, -1.39 to -0.14; P = .02) months. Comparatively fewer caries developed in children receiving the PT intervention over 3 months (ratio of rate ratios, 0.73; 95% CI, 0.54 to 0.99; P = .04). CONCLUSIONS: PT represents a promising approach for improving oral hygiene and oral health in underserved children with ASD at risk for dental problems.
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Transtorno do Espectro Autista , Transtorno Autístico , Cárie Dentária , Comportamento Problema , Adolescente , Transtorno do Espectro Autista/terapia , Criança , Pré-Escolar , Assistência Odontológica , Cárie Dentária/terapia , Feminino , Humanos , Masculino , Pais/educaçãoRESUMO
Autism spectrum disorder (ASD) can be reliably diagnosed at 18 months, yet significant diagnostic delays persist in the United States. This double-blinded, multi-site, prospective, active comparator cohort study tested the accuracy of an artificial intelligence-based Software as a Medical Device designed to aid primary care healthcare providers (HCPs) in diagnosing ASD. The Device combines behavioral features from three distinct inputs (a caregiver questionnaire, analysis of two short home videos, and an HCP questionnaire) in a gradient boosted decision tree machine learning algorithm to produce either an ASD positive, ASD negative, or indeterminate output. This study compared Device outputs to diagnostic agreement by two or more independent specialists in a cohort of 18-72-month-olds with developmental delay concerns (425 study completers, 36% female, 29% ASD prevalence). Device output PPV for all study completers was 80.8% (95% confidence intervals (CI), 70.3%-88.8%) and NPV was 98.3% (90.6%-100%). For the 31.8% of participants who received a determinate output (ASD positive or negative) Device sensitivity was 98.4% (91.6%-100%) and specificity was 78.9% (67.6%-87.7%). The Device's indeterminate output acts as a risk control measure when inputs are insufficiently granular to make a determinate recommendation with confidence. If this risk control measure were removed, the sensitivity for all study completers would fall to 51.6% (63/122) (95% CI 42.4%, 60.8%), and specificity would fall to 18.5% (56/303) (95% CI 14.3%, 23.3%). Among participants for whom the Device abstained from providing a result, specialists identified that 91% had one or more complex neurodevelopmental disorders. No significant differences in Device performance were found across participants' sex, race/ethnicity, income, or education level. For nearly a third of this primary care sample, the Device enabled timely diagnostic evaluation with a high degree of accuracy. The Device shows promise to significantly increase the number of children able to be diagnosed with ASD in a primary care setting, potentially facilitating earlier intervention and more efficient use of specialist resources.
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OBJECTIVE: Children born preterm are at increased risk for autism spectrum disorder (ASD). However, early diagnosis of ASD is challenging because conventional screening Level 1 tools are less reliable in this population. We sought to determine whether the Autism Detection in Early Childhood (ADEC) and Child Behavior Checklist (CBCL) could accurately identify children at risk for ASD in a NICU Follow-up setting and thus facilitate referral for formal ASD evaluation. METHOD: Children aged 18-36 months were recruited from a NICU Follow-up program. All children received presumptive diagnoses based on DSM-5 criteria and were screened for ASD risk with the ADEC and CBCL. Children scoring in the "at risk" range on either tool were referred for a full diagnostic ASD evaluation. RESULTS: Sixty-nine patients (median birth weight 1140 g; median gestational age 28 weeks) were included with 18 designated "at risk" for ASD. Nine (13 %) scored "at risk" on the ADEC and 12 (17 %) on the CBCL. Thirteen children underwent diagnostic ASD evaluation with 9 receiving a formal diagnosis of ASD. The ADEC demonstrated the best performance (sensitivity 89 %, specificity 98 %). The CBCL was less sensitive (sensitivity 50 %, specificity 90 %). Requiring elevated scores on both the CBCL and ADEC was specific but not sensitive (sensitivity 33 %, specificity 100 %). CONCLUSION: The ADEC performed well in identifying children at risk for ASD within this high-risk NICU cohort, adding benefit as an autism-specific screening tool over the CBCL alone.
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Transtorno do Espectro Autista , Transtorno Autístico , Transtorno do Espectro Autista/diagnóstico , Criança , Pré-Escolar , Seguimentos , Humanos , Lactente , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Programas de RastreamentoRESUMO
Challenges associated with the current screening and diagnostic process for autism spectrum disorder (ASD) in the US cause a significant delay in the initiation of evidence-based interventions at an early age when treatments are most effective. The present study shows how implementing a second-order diagnostic measure to high risk cases initially flagged positive from screening tools can further inform clinical judgment and substantially improve early identification. We use two example measures for the purposes of this demonstration; a saliva test and eye-tracking technology, both scalable and easy-to-implement biomarkers recently introduced in ASD research. Results of the current cost-savings analysis indicate that lifetime societal cost savings in special education, medical and residential care are estimated to be nearly $580,000 per ASD child, with annual cost savings in education exceeding $13.3 billion, and annual cost savings in medical and residential care exceeding $23.8 billion (of these, nearly $11.2 billion are attributable to Medicaid). These savings total more than $37 billion/year in societal savings in the US. Initiating appropriate interventions faster and reducing the number of unnecessary diagnostic evaluations can decrease the lifetime costs of ASD to society. We demonstrate the value of implementing a scalable highly accurate diagnostic in terms of cost savings to the US. LAY SUMMARY: This paper demonstrates how biomarkers with high accuracy for detecting autism spectrum disorder (ASD) could be used to increase the efficiency of early diagnosis. Results also show that, if more children with ASD are identified early and referred for early intervention services, the system would realize substantial costs savings across the lifespan.
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Transtorno do Espectro Autista , Transtorno Autístico , Transtorno do Espectro Autista/diagnóstico , Biomarcadores , Criança , Diagnóstico Precoce , Humanos , Programas de Rastreamento , Estados UnidosRESUMO
LAY ABSTRACT: There is a nationally recognized need for innovative healthcare delivery models to improve care continuity for autistic adults as they age out of pediatric and into adult healthcare systems. One possible model of care delivery is called the "medical home". The medical home is not a residential home, but a system where a patient's healthcare is coordinated through a primary care physician to ensure necessary care is received when and where the patient needs it. We compared the continuity of care among autistic adult patients at a specialized primary care medical home designed to remove barriers to care for autistic adults, called the CAST, to matched national samples of autistic adults with private insurance or Medicare. Continuity of primary care among CAST patients was significantly better than that of matched national samples of autistic adult Medicare beneficiaries and similar to that of privately insured autistic adults. Our findings suggest that medical homes, like CAST, are a promising solution to improve healthcare delivery for the growing population of autistic adults.
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Transtorno do Espectro Autista , Transtorno Autístico , Adulto , Idoso , Transtorno do Espectro Autista/terapia , Transtorno Autístico/terapia , Criança , Continuidade da Assistência ao Paciente , Humanos , Medicare , Assistência Centrada no Paciente , Atenção Primária à Saúde , Estados UnidosRESUMO
The Autism Treatment Network and Autism Intervention Research Network on Physical Health were established in 2008 with goals of improving understanding of the medical aspects of autism spectrum disorders. Over the past decade, the combined network has conducted >2 dozen clinical studies, established clinical pathways for best practice, developed tool kits for professionals and families to support better care, and disseminated these works through numerous presentations at scientific meetings and publications in medical journals. As the joint network enters its second decade continuing this work, it is undergoing a transformation to increase these activities and accelerate their incorporation into clinical care at the primary care and specialty care levels. In this article, we describe the past accomplishments and present activities. We also outline planned undertakings such as the establishment of the Autism Learning Health Network, the increasing role of family members as co-producers of the work of the network, the growth of clinical trials activities with funding from foundations and industry, and expansion of work with primary care practices and autism specialty centers. We also discuss the challenges of supporting network activities and potential solutions to sustain the network.
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Transtorno do Espectro Autista/terapia , Criança , Serviços de Saúde da Criança/organização & administração , Humanos , Guias de Prática Clínica como AssuntoRESUMO
OBJECTIVES: To summarize baseline data and lessons learned from the Autism Learning Health Network, designed to improve care and outcomes for children with autism spectrum disorder (ASD). We describe challenging behaviors, co-occurring medical conditions, quality of life (QoL), receipt of recommended health services, and next steps. METHODS: A cross-sectional study of children 3 to 12 years old with ASD receiving care at 13 sites. Parent-reported characteristics of children with ASD were collected as outcome measures aligned with our network's aims of reducing rates of challenging behaviors, improving QoL, and ensuring receipt of recommended health services. Parents completed a survey about behavioral challenges, co-occurring conditions, health services, and the Patient-Reported Outcomes Measurement Information System Global Health Measure and the Aberrant Behavior Checklist to assess QoL and behavior symptoms, respectively. RESULTS: Analysis included 530 children. Challenging behaviors were reported by the majority of parents (93%), frequently noting attention-deficit/hyperactivity disorder symptoms, irritability, and anxiety. Mean (SD) scores on the Aberrant Behavior Checklist hyperactivity and irritability subscales were 17.9 (10.5) and 13.5 (9.2), respectively. The Patient-Reported Outcomes Measurement Information System Global Health Measure total score of 23.6 (3.7) was lower than scores reported in a general pediatric population. Most children had received recommended well-child (94%) and dental (85%) care in the past 12 months. CONCLUSIONS: This baseline data (1) affirmed the focus on addressing challenging behaviors; (2) prioritized 3 behavior domains, that of attention-deficit/hyperactivity disorder, irritability, and anxiety; and (3) identified targets for reducing severity of behaviors and strategies to improve data collection.
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Transtorno do Espectro Autista/terapia , Transtornos do Comportamento Infantil/terapia , Qualidade de Vida , Transtorno do Espectro Autista/complicações , Criança , Transtornos do Comportamento Infantil/complicações , Serviços de Saúde da Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , MasculinoRESUMO
BACKGROUND AND OBJECTIVES: Families of children with autism spectrum disorder (ASD) often experience challenges navigating multiple systems to access services. Family navigation (FN) is a model to provide information and support to access appropriate services. Few studies have been used to examine FN's effectiveness for families of children with ASD. This study used mixed methods to (1) characterize FN services received by a sample of families in the Autism Treatment Network; (2) examine change in parent-reported activation, family functioning, and caregiver strain; and (3) explore families' experiences with FN services. METHODS: Family characteristics and parent outcomes including parent activation, family functioning, and caregiver strain were collected from 260 parents in the Autism Treatment Network. Descriptive statistics and linear mixed models were used for aims 1 and 2. A subsample of 27 families were interviewed about their experiences with FN services to address aim 3. RESULTS: Quantitative results for aims 1 and 2 revealed variability in FN services and improvement in parent activation and caregiver strain. Qualitative results revealed variability in family experiences on the basis of FN implementation differences (ie, how families were introduced to FN, service type, intensity, and timing) and whether they perceived improved skills and access to resources. CONCLUSIONS: Findings suggest FN adaptations occur across different health care delivery systems and may result in highly variable initial outcomes and family experiences. Timing of FN services and case management receipt may contribute to this variability for families of children with ASD.
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Transtorno do Espectro Autista/terapia , Família , Navegação de Pacientes , Atitude , Criança , Serviços de Saúde da Criança , Família/psicologia , Feminino , Humanos , MasculinoRESUMO
Background: Little is known about the extent to which patient-centered medical homes meet the needs of autistic adults. Materials & methods: We conducted a cross-sectional survey of autistic adult patients (n = 47) and caregivers of autistic adult patients (n = 66) receiving care through one patient-centered medical home specifically designed to meet the needs of this population. We performed post hoc comparisons of our results to previously published data from a national sample of autistic adults. Results: Participants reported high levels of satisfaction with care, frequent preventive healthcare use and few unmet healthcare needs. Autistic adults in our sample reported significantly higher satisfaction and fewer unmet healthcare needs. Conclusion: A patient-centered medical home tailored to the needs of autistic adults is a promising approach to healthcare delivery for meeting this population's needs.