Dataset Information

The Transition to the Adult Health Care System Among Youths With Autism Spectrum Disorder.

ABSTRACT: The study examined how health care utilization patterns among youths with autism spectrum disorder (ASD) change as they transition into the adult health care system.Data came from the Clinformatics Data Mart Database, a nationally diverse, clinically rich, private insurance claims database. The analytic sample consisted of youths ages 16 to 23 who were diagnosed as having ASD (N=16,338). Cross-sectional multivariate linear regressions determined whether service usage in home, office or outpatient, inpatient, and emergency department (ED) settings differed by age.The proportion of youths with ASD who received services declined with age in each setting except the ED. A similar reduction existed in number of visits to office or outpatient settings and inpatient settings, while home and ED visits remained stable. Service utilization declined faster among youths with co-occurring intellectual disability.There is a notable decline in service utilization across multiple settings as youths with ASD transition from pediatric to adult health care.

SUBMITTER: Nathenson RA

PROVIDER: S-EPMC5567738 | biostudies-literature | 2017 Jul

REPOSITORIES: biostudies-literature

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The Transition to the Adult Health Care System Among Youths With Autism Spectrum Disorder.

Nathenson Robert A RA Zablotsky Benjamin B

Psychiatric services (Washington, D.C.) 20170315 7

<h4>Objective</h4>The study examined how health care utilization patterns among youths with autism spectrum disorder (ASD) change as they transition into the adult health care system.<h4>Methods</h4>Data came from the Clinformatics Data Mart Database, a nationally diverse, clinically rich, private insurance claims database. The analytic sample consisted of youths ages 16 to 23 who were diagnosed as having ASD (N=16,338). Cross-sectional multivariate linear regressions determined whether service ...[more]

PMID: 28292222

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Project description:BackgroundA strong primary care system is vital to overall health. Research on the primary care of people with autism spectrum disorder (ASD) has mostly focused on children. A synthesis of the existing literature related to the quality of primary care for the adult population with ASD would elucidate what is known about the topic as well as inform future research and clinical practice.ObjectiveThe purpose of our scoping review is to describe what is known about the quality of primary care for adults with ASD and identify knowledge gaps.MethodsPrior to beginning the literature search, we reviewed literature related to defining both primary care and primary care quality to establish the context and concept of the research question. The search strategy was designed and executed by a research librarian. The MEDLINE, CINAHL, EMBASE, PsycINFO, and ProQuest Dissertations and Theses databases were searched for relevant literature. Grey literature will include relevant reports from government websites and associations with a focus on ASD. Two members of the research team will independently screen the academic and grey literature. Quantitative, qualitative, or mixed methods study designs involving the quality of primary care services or patient-centered care for adults with ASD are eligible for inclusion in our scoping review. Studies that make it past the full-text review will undergo data extraction and quality appraisal by 2 independent reviewers. The data extraction results will be presented in a tabular format to clearly present what is known about the quality of primary care for adults with ASD; this table will be accompanied by a narrative synthesis. Literature selected for extraction will be coded for themes, which will form the basis of a thematic synthesis. The scoping review will follow the guidance proposed by the Joanna Briggs Institute.ResultsThe search of electronic databases was conducted in October 2020, and it returned 2820 results. This research is still in progress. The results from our scoping review are expected to be available by fall 2021.ConclusionsThe results from our scoping review will be useful for guiding future research on the quality of primary care for adults with ASD.International registered report identifier (irrid)PRR1-10.2196/28196.

Project description:AimFirst, to understand the barriers to achieving effective transition and the supports required from the perspective of parents and carers, adolescents with intellectual disability and/or autism spectrum disorder and co-existing mental health disorders (often termed 'dual disability'), and those who provide services to this group. Second, to develop an informed model of shared care to improve the transition of adolescents with dual disabilities.MethodCarers and a young adult with a dual disability were surveyed about their experience of transition care. Other key stakeholders including paediatricians, general practitioners, and policy makers were also interviewed. These data informed the model of care.ResultsPaediatricians and general practitioners reported difficulties establishing working relationships to foster smooth transitions, and carers reported lacking a regular general practitioner with adequate expertise to care for people with dual disabilities. A process of shared care between paediatricians and general practitioners was developed and initiated by a dedicated transition manager, who assisted with care coordination and service linkages. Standardized clinical assessment tools were also introduced to determine patient and carer support needs.InterpretationThis study highlights the potential to improve transition outcomes for adolescents with dual disabilities and their carers through early transition planning, consistent methods of assessing patient and carer needs, and shared care.What this paper addsAdolescents with co-occurring disabilities require a collaborative health and disability service interface. Fearless, Tearless Transition is a new approach to transitioning adolescents with dual disabilities from paediatric to adult care. Carers of adolescents with dual disabilities require support navigating and negotiating services. Engaging general practitioners and paediatricians in shared care early during the transition process is essential.

Dataset Information

The Transition to the Adult Health Care System Among Youths With Autism Spectrum Disorder.

Publications

The Transition to the Adult Health Care System Among Youths With Autism Spectrum Disorder.

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