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1.
BMJ Paediatr Open ; 8(1)2024 Jun 18.
Artigo em Inglês | MEDLINE | ID: mdl-38897620

RESUMO

BACKGROUND: The UK National Health Service (NHS) Long Term Plan aims to reduce waiting times for childhood autism diagnostic assessment and improve parent and child satisfaction. This empirical research investigated current childhood diagnostic practice provision, and changes made by teams to address challenges faced. METHODS: Data were collected using an online semi-structured research questionnaire. UK childhood autism diagnostic assessment services (for children aged 1-18 years) were invited to participate through multidisciplinary clinical networks, special interest groups and professionals mailing lists. The study was on the National Institute for Health Research Clinical Research Network portfolio. RESULTS: 128 clinicians from diverse NHS services responded including: 10 (8%) integrated services, 46 (36%) Child and Adolescent Mental Health Services (CAMHS) and 72 (56%) paediatric services. A minority of services (23, 17.9%) reported always meeting the National Institute for Health and Care Excellence guidance for assessment. Referrals rose 115% between 2015 and 2019. Clinicians described increased child and family complexity compared with previously; children had more co-occurring physical, mental health and neurodevelopmental conditions and there were more frequent family health problems and safeguarding concerns. Most services (97, 75.8%) reported recent funding stayed constant/decreased. Incomplete multidisciplinary teams (MDTs) were frequently reported; a minority of services reported increased availability of professionals, and some experienced reductions in key professionals. Many teams were unable to undertake assessments or make recommendations for associated neurodevelopmental and co-existing conditions. Teams described improvement strategies implemented (eg, adapting professionals' roles, supporting parents). CONCLUSIONS: Most UK autism paediatric and CAMHS diagnostic teams experience significant challenges affecting the assessment of children with possible autism, and recommendations regarding treatment/intervention. Where CAMHS or paediatric services work in isolation, there are often competency gaps in MDTs and ability to deliver full neurodevelopmental and mental health assessments. Teams identified service improvement strategies; however, investment in MDT expertise is required to enable services to implement changes to meet the needs of children and families.


Assuntos
Transtorno Autístico , Humanos , Reino Unido/epidemiologia , Criança , Pré-Escolar , Adolescente , Transtorno Autístico/diagnóstico , Transtorno Autístico/terapia , Transtorno Autístico/epidemiologia , Lactente , Masculino , Feminino , Inquéritos e Questionários , Serviços de Saúde da Criança , Medicina Estatal , Encaminhamento e Consulta , Pesquisas sobre Atenção à Saúde
2.
Autism Res ; 17(6): 1072-1082, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38804591

RESUMO

Recent findings from the Centers for Disease Control and Prevention's (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network's 2020 prevalence report indicate that disparities in autism diagnoses between Black and White youth have narrowed, reflecting improved screening, awareness, and access to services (Maenner et al., 2023. Morbidity and Mortality Weekly Report. Surveillance Summaries (Washington, D.C.: 2002), 72, 1-14.). Claims of reducing disparities beyond prevalence rates, however, are not fully supported, as indicated by the reality that Black youth whose screenings indicate autistic traits are still not being referred for full evaluation or early intervention services at the same rate as their White peers (Major et al., 2020. Autism, 24, 1629-1638; Smith et al., 2020. Pediatrics, 145, S35-S46.). Black 8-year-olds identified as autistic still experience disparate educational placements (Waitoller et al., 2010. The Journal of Special Education. 44, 29-49.) where services may not be autism-specific or have Individual Education Plan goals only focused on "behavior problems" (Severini et al., 2018. Journal of Autism and Developmental Disorders, 48, 3261-3272.), are served in the most restrictive environments (Skiba et al., 2006. Exceptional Children, 72, 411-424.) and lack consistent augmentative and alternative communication support (Pope et al., 2022. American Journal of Speech-Language Pathology, 31, 2159-2174.). Additionally, ADMM researchers report consistent disparities in the identification of co-occurring intellectual disability where Black autistic children have significantly more co-occurrences than White autistic children. The purpose of this commentary is to first examine the assertion that the narrowed gap indicates, "…improved…access to services among historically underserved groups," (p. 9) (Maenner et al., 2023. Morbidity and Mortality Weekly Report. Surveillance Summaries (Washington, D.C.: 2002), 72, 1-14.). We will then recommend strategies to address the ongoing disparities.


Assuntos
Transtorno Autístico , Negro ou Afro-Americano , Humanos , Prevalência , Criança , Negro ou Afro-Americano/estatística & dados numéricos , Estados Unidos/epidemiologia , Transtorno Autístico/epidemiologia , Adolescente , Disparidades em Assistência à Saúde/estatística & dados numéricos , Masculino , Transtorno do Espectro Autista/epidemiologia , Feminino , Disparidades nos Níveis de Saúde
3.
PLoS One ; 19(5): e0303873, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38809913

RESUMO

BACKGROUND: Autistic people are more likely to experience stigma, communication barriers and anxiety during healthcare. Autism Health Passports (AHPs) are a communication tool that aim to provide information about healthcare needs in a standardised way. They are recommended in research and policy to improve healthcare quality. AIM: To explore views and experiences of AHPs among Autistic people from the UK who have been pregnant. METHODS: We developed an online survey using a combination of open and closed questions focused on healthcare impairments and views and experiences of AHPs. Data were anlaysed using descriptive statistics, Kruskal-Wallis tests, and content analysis. FINDINGS: Of 193 Autistic respondents (54% diagnosed, 22% undergoing diagnosis and 24% self-identifying), over 80% reported anxiety and masking during healthcare always or most of the time. Some significant differences were identified in healthcare (in)accessibility by diagnostic status. Only 4% of participants knew a lot about AHPs, with 1.5% of participants using one at least half of the time. Almost three quarters of respondents had not previously seen an AHP. Open text responses indicated that the biggest barrier to using an AHP was a belief that health professionals would discriminate against Autistic patients. Additional barriers included staff lack of familiarity with AHPs and respondents expecting a negative response to producing an AHP. CONCLUSIONS: Our findings suggest that AHPs are not reducing health inequalities for Autistic adults who have been pregnant. Alternative solutions are needed to reduce health inequalities for Autistic people.


Assuntos
Transtorno Autístico , Acessibilidade aos Serviços de Saúde , Humanos , Feminino , Transtorno Autístico/psicologia , Transtorno Autístico/epidemiologia , Adulto , Reino Unido/epidemiologia , Estudos Transversais , Masculino , Gravidez , Inquéritos e Questionários , Adulto Jovem , Pessoa de Meia-Idade , Ansiedade/epidemiologia , Barreiras de Comunicação , Estigma Social , Adolescente
4.
Autism ; 28(3): 580-586, 2024 03.
Artigo em Inglês | MEDLINE | ID: mdl-37243353

RESUMO

ABSTRACT: TThe COVID-19 pandemic disrupted a range of health services for children across the United States. Autistic children have well-documented deficits in health-related services compared to nonautistic children. Parents of autistic children reported an increase in mental health and behavior problems with the onset of the pandemic, increasing the need for supportive services. The current study used data from the National Survey of Children's Health from 2019 and 2020 to conduct logistic regressions predicting the likelihood of having unmet service needs before and after the onset of the pandemic. Results suggested that autistic children were more likely to have unmet medical, dental, and mental health service needs across years compared to nonautistic children, but there were no interactions by year. All children experienced an increased likelihood of having unmet needs from pre- to post-pandemic. Results suggest that although the pandemic disrupted services across the board, autistic children lacked health services regardless of the pandemic, pointing to persisting disparities in service receipt. A discussion of ongoing barriers to services and issues related to virtual services is included. Future research should further investigate the feasibility of virtual services as well as ways of reducing barriers to all services for autistic children.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , COVID-19 , Criança , Humanos , Estados Unidos/epidemiologia , Transtorno Autístico/terapia , Transtorno Autístico/epidemiologia , Pandemias , Acessibilidade aos Serviços de Saúde , Transtorno do Espectro Autista/terapia , Serviços de Saúde
5.
Acad Pediatr ; 24(2): 258-266, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37931804

RESUMO

OBJECTIVE: This paper examines the distribution, parameters, and determinants of safety net program use among a nationally representative sample of low-income children with autism spectrum disorder (ASD). METHODS: We used data from the 2021 National Survey of Children's Health to produce population estimates of material hardship and safety net program use among 554 low-income households of children with ASD, ages 3 to 17 years, relative to 2831 children with other special health care needs (SHCN) and 8758 children with no SHCN of the same age. Design-adjusted multivariate logistic regression models identified predictors of cash assistance, Supplemental Nutrition Assistance Program, and disconnection from both. RESULTS: There were few significant differences in material hardship between children with ASD and those with other SHCN, although children with ASD experienced significantly higher levels of hardships compared to children with no SHCN. Having a child with ASD did not significantly increase the odds of safety net use. Health insurance and household income were stronger predictors of use than disability. Nine percent of disconnected children lived in households under 100% federal poverty level and experienced some type of material hardship. CONCLUSIONS: Future research about the economic security of children with ASD and their families could focus on the following 3 areas of inquiry: assess how race, ethnicity, or socioeconomic position interact with disability to influence safety net program use; examine the intersection between Medicaid and safety net programs at the state and national levels; and identify specific subgroups of children at risk for disconnection and understand why they are not accessing benefits.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Criança , Estados Unidos , Humanos , Transtorno Autístico/epidemiologia , Transtorno do Espectro Autista/epidemiologia , Pobreza , Seguro Saúde , Medicaid
6.
JAMA Psychiatry ; 80(12): 1284-1287, 2023 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-37792361

RESUMO

Importance: The reported prevalence of autism in children has consistently risen over the past 20 years. The concurrent implications for the adult Medicaid system, which insures autistic adults due to low income or disability, have not been studied. Objective: To estimate the prevalence of adults identified as autistic in Medicaid claims data and to examine the prevalence by year, age, and race and ethnicity to understand enrollment patterns. Design, Setting, and Participants: This cohort study used data from a longitudinal Medicaid claims cohort of enrollees aged 18 years or older with a claim for autism at any point from January 1, 2011, to December 31, 2019, and an approximately 1% random sample of all adult Medicaid enrollees. The data were analyzed between February 22 and June 22, 2023. Exposure: Adults enrolled in Medicaid with a claim for autism. Main Outcome and Measures: Prevalence of autism per 1000 Medicaid enrollees for each year was calculated using denominator data from the Centers for Medicare & Medicaid Services weighted to nondisabled population demographic characteristics. Prevalence by race and ethnicity were calculated for study year 2019. Results: Across 9 years, 403 028 unique adults had autism claims in their Medicaid records (25.7% female, 74.2% male, 3.3% Asian, 16.8% Black, 12.2% Hispanic, 0.8% Native American, 0.8% Pacific Islander, 74.3% White, and 4.2% of multiple races). Across all ages, autism prevalence increased from 4.2 per 1000 enrollees in 2011 to 9.5 per 1000 enrollees in 2019. The largest increase over the 9 years was in the 25- to 34-year age group (195%), and the smallest increase was in the 55- to 64-year age group (45%). The prevalence of White enrollees was at least 2 times that of the prevalence of every other racial group in all age categories. Conclusions and Relevance: The study findings suggest that despite difficulties in identifying autism in adults, there is a considerable and growing population of autistic adults enrolled in Medicaid. As children on the autism spectrum become autistic adults, Medicaid is an important insurance provider for an increasing number of autistic adults and can be a valuable resource for understanding the health of the autistic population.


Assuntos
Transtorno Autístico , Medicaid , Criança , Adulto , Humanos , Masculino , Idoso , Estados Unidos/epidemiologia , Feminino , Transtorno Autístico/diagnóstico , Transtorno Autístico/epidemiologia , Estudos de Coortes , Prevalência , Medicare
7.
BMC Prim Care ; 24(1): 159, 2023 08 10.
Artigo em Inglês | MEDLINE | ID: mdl-37563549

RESUMO

BACKGROUND: Significant challenges remain in the early identification of child developmental disabilities in the community. Implementing supports and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental disabilities, including autism. As part of a cluster randomised controlled trial, this study seeks to examine and compare the perspectives and experiences of Australian general practitioners (GPs) in relation to a digital developmental surveillance program for autism and usual care pathway, in general practice clinics. METHODS: A qualitative research methodology with semi-structured interviews and thematic inductive analysis underpinned by grounded theory was utilised. All GPs from South Western Sydney (NSW) and Melbourne (Victoria) who participated in the main program ("GP Surveillance for Autism") were invited to the interview. GPs who provided consent were interviewed either over online or in-person meeting. Interviews were audio-recorded, transcribed, and coded using NVivo12 software. Inductive interpretive approach was adopted and data were analysed thematically. RESULTS: Twenty-three GPs across the two sites (NSW: n = 11; Victoria: n = 12) agreed to be interviewed; data saturation had reached following this number of participants. Inductive thematic coding and analysis yielded eight major themes and highlighted common enablers such as the role of GPs in early identification and subsequent supports, enhanced communication between clinicians/professionals, relationship-building with patients, and having standardised screening tools. Specific facilitators to the feasibility and acceptability of a digital screening program for the early identification of developmental disabilities, including the early signs of autism, and encouraging research and education for GPs. However, several practical and socioeconomic barriers were identified, in addition to limited knowledge and uptake of child developmental screening tools as well as COVID-19 lockdown impacts. Common and specific recommendations involve supporting GPs in developmental/paediatrics training, streamlined screening process, and funding and resources in the primary healthcare services. CONCLUSIONS: The study highlighted the need for practice and policy changes, including further training of GPs alongside sufficient time to complete developmental checks and appropriate financial remuneration through a Medicare billing item. Further research is needed on implementation and scale up of a national surveillance program for early identification of developmental disabilities, including autism.


Assuntos
Transtorno Autístico , COVID-19 , Clínicos Gerais , Idoso , Humanos , Criança , Estados Unidos , Transtorno Autístico/diagnóstico , Transtorno Autístico/epidemiologia , Austrália/epidemiologia , Atitude do Pessoal de Saúde , Controle de Doenças Transmissíveis , Medicare , Pesquisa Qualitativa , Atenção Primária à Saúde
8.
JAMA Netw Open ; 6(2): e2254303, 2023 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-36729455

RESUMO

Importance: Autism detection early in childhood is critical to ensure that autistic children and their families have access to early behavioral support. Early correlates of autism documented in electronic health records (EHRs) during routine care could allow passive, predictive model-based monitoring to improve the accuracy of early detection. Objective: To quantify the predictive value of early autism detection models based on EHR data collected before age 1 year. Design, Setting, and Participants: This retrospective diagnostic study used EHR data from children seen within the Duke University Health System before age 30 days between January 2006 and December 2020. These data were used to train and evaluate L2-regularized Cox proportional hazards models predicting later autism diagnosis based on data collected from birth up to the time of prediction (ages 30-360 days). Statistical analyses were performed between August 1, 2020, and April 1, 2022. Main Outcomes and Measures: Prediction performance was quantified in terms of sensitivity, specificity, and positive predictive value (PPV) at clinically relevant model operating thresholds. Results: Data from 45 080 children, including 924 (1.5%) meeting autism criteria, were included in this study. Model-based autism detection at age 30 days achieved 45.5% sensitivity and 23.0% PPV at 90.0% specificity. Detection by age 360 days achieved 59.8% sensitivity and 17.6% PPV at 81.5% specificity and 38.8% sensitivity and 31.0% PPV at 94.3% specificity. Conclusions and Relevance: In this diagnostic study of an autism screening test, EHR-based autism detection achieved clinically meaningful accuracy by age 30 days, improving by age 1 year. This automated approach could be integrated with caregiver surveys to improve the accuracy of early autism screening.


Assuntos
Transtorno Autístico , Criança , Humanos , Adulto , Lactente , Transtorno Autístico/diagnóstico , Transtorno Autístico/epidemiologia , Registros Eletrônicos de Saúde , Estudos Retrospectivos , Valor Preditivo dos Testes , Inquéritos e Questionários
9.
Autism ; 27(7): 2145-2157, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-36799305

RESUMO

LAY ABSTRACT: Children are at risk of varying severity of illness and even death from COVID-19. We aim to determine whether autistic children or children with mental health conditions have more underlying health conditions that put people at risk of severe illness from COVID-19. We use data from a national sample of Medicaid-enrolled children for the years 2008-2016. These data include children across the 50 states and the District of Columbia. We compare the prevalence of underlying conditions among autistic children and children with mental health condition to that of other children in Medicaid. This study included 888,487 autistic children, 423,397 with any mental health condition (but not autism), and 932,625 children without any of these diagnoses. We found 29.5% of autistic children and 25.2% of children with mental health conditions had an underlying condition with high risk for severe illness from COVID, compared to 14.1% of children without these diagnoses. Autistic children had over twice the odds of having any underlying conditions, when accounting for age, race, sex, and other characteristics. Children with mental health conditions had 70% higher odds of having these underlying conditions. Mitigation measures in schools and other areas could minimize risk of short- and long-term impacts from COVID for autistic and all children.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , COVID-19 , Humanos , Criança , Estados Unidos/epidemiologia , Transtorno Autístico/epidemiologia , Transtorno do Espectro Autista/epidemiologia , Prevalência , Medicaid , Saúde Mental , COVID-19/epidemiologia
10.
Autism Res ; 16(4): 757-771, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36639914

RESUMO

Poor sleep can have a significant impact on physical health and well-being. Sleep problems are common among autistic children, but less is known about sleep across the autistic adult lifespan. Autistic adults (n = 730, aged 18-78 years) were recruited via Simons Powering Autism Research for Knowledge Research Match. Participants completed online surveys asking about demographics, health problems, social support, symptoms of anxiety and depression, and overall and specific aspects of sleep quality. Regression analyses explored the variables associated with sleep quality. Physical health, assigned female sex at birth and self-reported anxiety symptoms significantly contributed to models for all aspects of sleep. Perceived stress contributed to models of overall and subjective sleep quality, and daytime dysfunction. Depression symptoms did not contribute significantly to any of the models of sleep quality. However, utilizing government support mechanisms (such as social security) contributed to the model of sleep efficiency. Age contributed little to models of sleep quality, whereas perceived stress and psychotropic medication use contributed to some but not all aspects of sleep. Sleep quality is poor for autistic people across the adult lifespan. Given known impacts of poor sleep on health, cognition and quality of life, attention should be paid to sleep and its possible everyday effects for autistic people of all ages.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Distúrbios do Início e da Manutenção do Sono , Adulto , Criança , Recém-Nascido , Humanos , Feminino , Transtorno Autístico/complicações , Transtorno Autístico/epidemiologia , Qualidade do Sono , Qualidade de Vida , Transtorno do Espectro Autista/complicações , Transtornos de Ansiedade/complicações , Distúrbios do Início e da Manutenção do Sono/complicações
11.
Autism ; 27(6): 1764-1776, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36597956

RESUMO

LAY ABSTRACT: Despite long wait times, public paediatric developmental assessment services remain crucial for assessment of children. Assessment is a critical opportunity to guide the placement of supports to improve outcomes. There is little research examining how clinical assessment services conduct their assessments, present results and write reports to families. This study examined 85 reports provided to caregivers at a developmental assessment service. Reports were evaluated for whether they (1) addressed caregiver perceived needs, (2) used available data to provide appropriate information about child needs, (3) provided recommendations that were actionable and specific to needs, (4) had appropriate readability levels and (5) followed existing autism assessment guidelines. Findings showed clinicians were more focused on autism diagnostic needs while caregivers were more focused on non-diagnostic needs. Recommendations related to autism diagnoses were actionable, but they rarely addressed comorbidities such as cognitive impairments or mental health. For instance, only 13% of reports contained recommendations for conditions other than autism spectrum disorder, despite 61% of the population receiving two or more diagnoses. Reports largely followed autism assessment guidelines, but the language used was more complex for families than recommended. Recommendations for future practice are provided so that consideration may be given to how to improve the quality and effectiveness of reports for families attending services.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Criança , Humanos , Transtorno do Espectro Autista/psicologia , Cuidadores/psicologia , Transtorno Autístico/epidemiologia , Saúde Mental , Comorbidade
12.
Intellect Dev Disabil ; 60(6): 484-503, 2022 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-36454617

RESUMO

National estimates of hospitalization diagnoses and costs were determined using the 2016 HCUP Kids' Inpatient Database. Children and youth with autism were hospitalized over 45,000 times at over $560 million in costs and 260,000 inpatient days. The most frequent principal diagnoses for hospitalizations of children and youth with autism were epilepsy, mental health conditions, pneumonia, asthma, and gastrointestinal disorders, which resulted in almost $200 million in costs and 150,000 inpatient days. Mental health diagnoses accounted for 24.8% of hospitalizations, an estimated $82 million in costs, and approximately 94,000 inpatient days. Children and youth with autism were more likely hospitalized for epilepsy, mental health diagnoses, and gastrointestinal disorders, and less likely for pneumonia and asthma compared to other children and youth.


Assuntos
Asma , Transtorno Autístico , Deficiência Intelectual , Criança , Estados Unidos , Adolescente , Humanos , Transtorno Autístico/epidemiologia , Hospitalização , Bases de Dados Factuais
13.
Mol Autism ; 13(1): 23, 2022 05 26.
Artigo em Inglês | MEDLINE | ID: mdl-35619147

RESUMO

BACKGROUND: Recent research suggests that autistic individuals have shorter lifespans and experience worse health (greater health burden) than non-autistic individuals. Small, qualitative studies suggest that autistic adults also experience poor self-reported healthcare quality. METHODS: An anonymized, cross-sectional, self-report questionnaire was administered to n = 4158 individuals. The study assessed prevalence of chronic health conditions, healthcare quality, differences in overall health inequality score, and effects of the coronavirus pandemic on healthcare quality. We used Fisher's exact tests, binomial logistic regression, and predictive machine learning tools, as appropriate. RESULTS: The final sample included n = 2649 participants (n = 1285 autistic) aged 16-96 years. Autistic adults reported lower quality healthcare than non-autistic adults across 50/51 items, including poorer access to healthcare and poorer communication, alongside increased anxiety, sensory sensitivity, system-level problems, shutdowns, and meltdowns. Differences between groups were stark: aggregated health inequality scores predicted autism diagnosis, even after stratifying by sex. Autistic adults were also more likely to have chronic health conditions than non-autistic adults. There were no significant differences in healthcare quality for autistic adults before and during the pandemic, although they received relatively poorer quality healthcare than non-autistic adults across both periods. LIMITATIONS: The study's sampling methods are not likely to capture the perspectives of all autistic individuals, especially those with intellectual disability. Both the autistic and control samples are biased towards UK residents, white individuals, those assigned female at birth, and those who completed an undergraduate degree or higher education. As such, these results may limit their generalizability to other groups. Finally, these results relate to self-reported differences in healthcare quality between autistic and non-autistic adults. The observed group differences may in part reflect differences in perception and communication rather than differences in actual healthcare quality. CONCLUSIONS: Autistic adults are more likely to have chronic health conditions alongside self-reported lower quality healthcare than others. Health inequalities between these groups are widespread and dramatic; unfortunately, they existed before and have persisted after the onset of the coronavirus pandemic.


Assuntos
Transtorno Autístico , Adulto , Transtorno Autístico/diagnóstico , Transtorno Autístico/epidemiologia , Estudos Transversais , Atenção à Saúde , Feminino , Disparidades nos Níveis de Saúde , Humanos , Recém-Nascido , Autorrelato
14.
Pediatrics ; 149(Suppl 4)2022 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-35363287

RESUMO

BACKGROUND: Addressing health care needs is complex in autistic youth for many reasons. Increased inpatient care that has been noted in this population, particularly for ambulatory care sensitive conditions (ACSCs), may be a marker of inadequate primary and outpatient care. METHODS: This study used data from hospital inpatient discharges from the National Inpatient Sample 2017. The prevalence, average length of stay, and the average cost per day of the 10 most common principal diagnoses for index stay were calculated for autistic youth and youth with mental, behavioral, and other neurodevelopmental disabilities (MBND), ages 0 to 17. RESULTS: Of every 1000 inpatient stays, 7.3 were for autistic youth and 65.2 for youth with MBND. The rate varied by US region and zip code-level household income. The most common diagnosis associated with stays in autistic youth was mood disorders, as in youth with MBND. Nearly all top 10 principal diagnoses for autistic youth were for ACSCs. The highest average cost per day for autistic youth was for physical injuries ($4320 per day), and the longest stays were for schizophrenia (14 days). CONCLUSIONS: High occurrence of ACSCs in autistic youth suggests that primary care may not adequately address health and mental health needs. Clinical complexity and autism characteristics may be impacting care received in the hospital. Additional considerations need to explore and examine care complexity, racial and ethnic disparities, and the large portion of Medicaid-covered youth. Strategies for the provision of care to these vulnerable populations are of great concern.


Assuntos
Transtorno Autístico , Adolescente , Transtorno Autístico/diagnóstico , Transtorno Autístico/epidemiologia , Transtorno Autístico/terapia , Criança , Pré-Escolar , Hospitais , Humanos , Lactente , Recém-Nascido , Pacientes Internados , Tempo de Internação , Medicaid , Estados Unidos/epidemiologia
15.
Adm Policy Ment Health ; 49(4): 694-705, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35320442

RESUMO

Timely data on service use and needs across the lifespan are essential to developing an effective and efficient service delivery system that is responsive to developmental issues. This study uses data from one of the largest statewide surveys conducted between 2017 and 2018 to compare service use and unmet needs among individuals on the autism spectrum across the lifespan. A statewide sample of 5792 caregivers of autistic children and adults were included in the study. Logistic regressions were conducted to compare service use and need among six age groups ranging from early childhood (0-5 years) to later adulthood (31+) while adjusting for sociodemographic characteristics. We found that the transition-age adult group (18-21 years) was less likely to receive services, including speech/language therapy, occupational therapy, one-on-one support, and social skill training, than adolescents. However, case management and mental health services increased with age. Young adults (22-30 years) were more likely to report unmet needs than both adolescents and transition-age adult groups. The use of services overall decrease and service needs increased compared to results from an earlier statewide survey that was conducting in 2009-2010. These results can be used to inform developmentally appropriate autism-related healthcare policies and service development and delivery. This study offers a more detailed look at differences between adult age subgroups that are novel. Further research is needed about the prevalence of ASD in adulthood, clinical trajectories, and outcomes in order to support autistic adults in getting the appropriate services and supports.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Serviços de Saúde Mental , Adolescente , Adulto , Transtorno do Espectro Autista/epidemiologia , Transtorno do Espectro Autista/terapia , Transtorno Autístico/epidemiologia , Transtorno Autístico/terapia , Criança , Pré-Escolar , Necessidades e Demandas de Serviços de Saúde , Humanos , Lactente , Recém-Nascido , Longevidade , Adulto Jovem
16.
J Gen Intern Med ; 37(10): 2413-2419, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-34990000

RESUMO

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.


Assuntos
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 Jovem
17.
J Autism Dev Disord ; 52(8): 3547-3559, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-34406587

RESUMO

This paper used Social Security Administration program data from 2005 to 2019 to examine national- and state-level changes in the number of new adult supplemental security income (SSI) awardees on the autism spectrum relative to awardees with intellectual disability and other mental health disorders. We identified three main findings: the number of autistic awards increased between 2005 and 2019 when awards for all other mental health disorders declined; roughly nine out of every 10 autistic adult awardees were between ages 18-25 years; there was variation in the growth of autistic awards across states. These findings support the need to consider geographic and age differences in SSI program participation among autistic adults and determine the underlying causes.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Adolescente , Adulto , Transtorno Autístico/epidemiologia , Humanos , Renda , Previdência Social , Estados Unidos/epidemiologia , United States Social Security Administration , Adulto Jovem
18.
Autism ; 26(4): 975-987, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-34420427

RESUMO

LAY ABSTRACT: Autistic adults, adults with intellectual disability, and adults with other mental health conditions may have higher risk of contracting COVID-19 or experiencing more severe illness from COVID-19 if infected. We used data from Medicaid to look at whether autistic adults and other adults with intellectual disability and other mental health conditions were more likely to have risk factors for COVID-19, such as living in a residential facility, receiving services regularly in the home from outside caregivers, having had a long hospitalization, having had avoidable hospitalizations, and having high-risk health conditions. We found that autistic adults had higher odds of living in a residential facility, receiving in-home services from outside caregivers, having had an avoidable hospitalization, and having a high-risk health condition, compared to neurotypical adults without mental health conditions. Adults with intellectual disability had similar odds of having these conditions. Adults with other mental health conditions were also more likely to live in a residential facility, receive services from outside caregivers, and have had avoidable hospitalizations compared to the neurotypical population without mental health conditions. They had three times higher odds of having a high-risk health condition. High risk of COVID-19 among autistic adults and adults with intellectual disability and mental health conditions should be recognized by clinicians, and these groups should be prioritized for vaccine outreach.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , COVID-19 , Deficiência Intelectual , Adulto , Transtorno do Espectro Autista/epidemiologia , Transtorno Autístico/epidemiologia , COVID-19/epidemiologia , Humanos , Deficiência Intelectual/epidemiologia , Medicaid , Saúde Mental , Estados Unidos/epidemiologia
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