Suicide and non-fatal self-injury-related emergency department visits among individuals with autism spectrum disorder.

LAY ABSTRACT: This study used data for 14.4 million individuals with 43.5 million emergency department visits from all hospitals in the state of New York to explore the association between suicide and non-fatal self-injury-related (self-injury) emergency department visits and autism spectrum disorder. Overall, we found that individuals with autism spectrum disorder had more emergency department visits and admissions through the emergency department, more years of emergency department utilization, and higher prevalence of mental health-related comorbidities. Individuals with autism spectrum disorder were also significantly more likely to have at least one self-injury-related emergency department visit compared to those without autism spectrum disorder. These results emphasize the need to raise awareness across both family caregivers and healthcare providers on the increased suicide and self-injury risks that individuals with autism spectrum disorder face and to improve care delivery practices. In addition, effort to promote and increase timely access to mental health care is an urgent priority for individuals with autism spectrum disorder.

Hospitalizations Among Children and Youth With Autism in the United States: Frequency, Characteristics, and Costs.

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.

Framing the front door: co-creating a home health care assessment of service need for children with disabilities.

This paper details the co-creation of a home health assessment tool for children with disabilities in the context of state-level systems change from traditional Medicaid to Medicaid managed care. A community based, sequential, mixed methods design was used to co-develop the assessment. A process evaluation highlighted community members' experiences with Medicaid managed care. Community members identified issues related to appropriateness of items and loss of services and recommended a dual assessment process to address concerns. Results indicated that 72% of items functioned well. Community members felt that organizational policies and the accuracy of clinical information obtained during assessment processes led directly to loss of services. Co-creating the assessment with caregivers of children with disabilities led to a comprehensive, person-centered, and holistic tool. The process buttressed several concrete systems and policy actions to improve home health care for children with disabilities in Medicaid managed care.

A Provider-Facing eHealth Tool for Transitioning Youth With Special Health Care Needs From Pediatric to Adult Care: Mixed Methods, User-Engaged Usability Study.

BACKGROUND: There is a need for medical education on health care transitions for youth with special health care needs. The Texas Transition Toolkit (the tool) supports providers through a one-stop shop for researching literature on care transitions, a catalog of care transition tools, and guides for developing care transition programs. OBJECTIVE: This study aims to assess the functionality and usability of the tool with providers working with transition-aged children and youth with special health care needs (representative users). METHODS: The tool was evaluated using a triangulated mixed methods case study approach consisting of a concurrent think-aloud phase, a satisfaction survey, and a survey of problem relevance and task performance to operationalize and capture functionality and usability. Our mixed methods deep dive into the functionality and usability of the tool focused on 10 representative users from one medical home in Texas and 5 website design experts. RESULTS: Representative users found the tool to be highly relevant, as demonstrated by the satisfaction score for relevance (138/150, 92%). According to the users, the tool provided comprehensive information related to health care transitions for youth with special health care needs, with a satisfaction score of 87.3% (131/150) for comprehensive. Overall satisfaction with the tool was high at 81.92% (1065/1300) with a cutoff score of 73.33% (953.4/1300) indicating high satisfaction, but users reported relatively lower satisfaction with search (114/150, 76%) and navigation (ease of use: 114/150, 76%; hyperlinks: 163/200, 81.5%; structure: 159/200, 79.5%). They experienced search- and navigation-related problems (total problems detected: 21/31, 68%) and, based on quality checks, had a relatively low task completion rate for tasks involving finding information (60/80, 75%), which required searching and navigation. The problems identified around search and navigation functionality were relevant (relevance scores ranging from 14.5 to 22, with a cutoff score of 11.7 indicating relevance). CONCLUSIONS: The tool may help bridge the gaps in training on health care transitions for youth with special health care needs in US medical education. The tool can be used to create structured protocols to help improve provider knowledge, collaboration across pediatric and adult care providers, and the continuity of care as youth with special health care needs transition from pediatric to adult care. The results provided a road map for optimizing the tool and highlighted the importance of evaluating eHealth technologies with representative users.

Examining frequent emergency department use among children and adolescents with autism spectrum disorder.

LAY ABSTRACT: This study used data for 5.9 million individuals with 9.1 million emergency department visits from all hospitals in the state of New York to explore frequent emergency department use between children and adolescents with autism spectrum disorders and those without autism spectrum disorders. We found that children and adolescents with autism spectrum disorders had larger shares of comorbidities and diagnoses related to attention-deficit/hyperactivity disorder, intellectual disability, and epilepsy. Children and adolescents with autism spectrum disorders were also more likely to utilize emergency departments and to exhibit frequent use. These results emphasize the need for using family-centered care to improve the care experiences of children and youth with autism spectrum disorders and their families. In addition, the education of emergency department staff of processes and practices as it relates to delivery of care and the care experience.