Development of the integrated New Jersey Safety and Health Outcomes (NJ-SHO) data warehouse: catalysing advancements in injury prevention research.

OBJECTIVE: Our objective was to describe the development of the New Jersey Safety and Health Outcomes (NJ-SHO) data warehouse-a unique and comprehensive data source that integrates state-wide administrative databases in NJ to enable the field of injury prevention to address critical, high-priority research questions. METHODS: We undertook an iterative process to link data from six state-wide administrative databases from NJ for the period of 2004 through 2018: (1) driver licensing histories, (2) traffic-related citations and suspensions, (3) police-reported crashes, (4) birth certificates, (5) death certificates and (6) hospital discharges (emergency department, inpatient and outpatient). We also linked to electronic health records of all NJ patients of the Children's Hospital of Philadelphia network, census tract-level indicators (using geocoded residential addresses) and state-wide Medicaid/Medicare data. We used several metrics to evaluate the quality of the linkage process. RESULTS: After the linkage process was complete, the NJ-SHO data warehouse included linked records for 22.3 million distinct individuals. Our evaluation of this linkage suggests that the linkage was of high quality: (1) the median match probability-or likelihood of a match being true-among all accepted pairs was 0.9999 (IQR: 0.9999-1.0000); and (2) the false match rate-or proportion of accepted pairs that were false matches-was 0.0063. CONCLUSIONS: The resulting NJ-SHO warehouse is one of the most comprehensive and rich longitudinal sources of injury data to date. The warehouse has already been used to support numerous studies and is primed to support a host of rigorous studies in the field of injury prevention.

Behind the Wheel: Specialized Driving Instructors' Experiences and Strategies for Teaching Autistic Adolescents to Drive.

IMPORTANCE: In the transition to adulthood, driving supports independence. For autistic adolescents, training provided by specialized driving instructors, including occupational therapists, may establish fitness to drive and continued independence. OBJECTIVE: To examine specialized driving instructors' experiences providing behind-the-wheel instruction to autistic adolescents. DESIGN: We recruited participants through purposive and snowball sampling of members of ADED, the Association for Driver Rehabilitation Specialists. Interviews investigated experiences providing instruction, autistic students' strengths and challenges, strategies used, and recommendations to improve the learning-to-drive process. We coded transcripts using a directed content analysis approach. SETTING: Telephone interviews. PARTICIPANTS: Specialized driving instructors (N = 17) trained as occupational therapists, driver rehabilitation specialists, or licensed driving instructors with recent experience providing behind-the-wheel training for autistic adolescents participated. RESULTS: Behind-the-wheel challenges included mental inflexibility, distractibility, and difficulties with social cues and motor coordination. Instructors acknowledged students' strengths, including adherence to rules of the road, limited risk taking, and careful observations. Instructors scaffolded learning to help students develop skills. Although licensure and driving outcomes were sometimes unknown to instructors, students who became licensed frequently drove with supervision or restrictions. CONCLUSIONS AND RELEVANCE: Licensure is possible for autistic adolescents, although developing fitness to drive requires individualization and rigorous specialized instruction, which may culminate in delayed or restricted driving. What This Article Adds: This article highlights challenges and strengths encountered by specialized driving instructors teaching autistic adolescents. Despite requiring prolonged training, autistic adolescents can achieve licensure when supported by specialized instruction that is individualized to their needs and strengths.

Short report on navigating access to care for Medicaid-enrolled autistic youth and young adults: Examining accrual of intellectual disability diagnoses in adolescence.

LAY ABSTRACT: What is known? In most states, Medicaid waivers provide individuals with an intellectual disability diagnosis generous healthcare coverage throughout adulthood. By comparison, fewer Medicaid programs are available for autistic individuals, and they are more likely to experience disruptions, or gaps, in Medicaid coverage and subsequently not re-enroll.What this paper adds? One in five autistic individuals with Medicaid coverage between ages 8 and 25 accrued a new intellectual disability diagnosis. The probability of a new intellectual disability diagnosis was higher among those who had previous disruptions in Medicaid coverage.Implications for research and policy. Expanding Medicaid to cover autistic people of all ages could decrease the need for intellectual disability diagnosis accrual. Input from autistic individuals and their families regarding their health insurance access and healthcare experiences is critically important to understanding next steps for research.

Preparing to "Live a Life of Possibilities": Experiences of Healthcare Providers Readying Autistic Adolescents and Their Families for Independent Driving.

Autistic adolescents and their families may experience barriers to transportation, including independent driving, which is critical to supporting quality of life and engagement in social, educational, and employment opportunities. Healthcare providers may feel unprepared to provide guidance to autistic adolescents, although they are among the professionals families turn to for guidance. This study describes providers' experiences supporting autistic adolescents and families in the decision to pursue licensure and identifies barriers experienced in providing support. We conducted interviews with 15 healthcare providers focused on how they support autistic adolescents and their families in navigating topics related to independence, driving, and transportation. Key themes identified included: importance of understanding adolescents' perspectives and motivations, approaches to readying caregivers for children to pursue driving, and role of providers in fostering agreement between adolescents and caregivers. Results reflect healthcare providers as intermediaries between autistic adolescents and caregivers making the decision to pursue licensure and bring families to consensus. Our findings emphasize the importance of healthcare providers, in collaboration with community-based providers, in supporting autistic adolescents and their families considering licensure. Improving conversations between providers and families provides opportunity to better support quality of life among autistic adolescents and their caregivers navigating the transition to independence.

The association between prenatal oxidative stress levels measured by isoprostanes and offspring neurodevelopmental outcomes at 36 months.

Oxidative stress during pregnancy has been a mechanistic pathway implicated in autism development, yet few studies have examined this association directly. Here, we examined the association of prenatal levels of 8-iso-PGF2α, a widely used measure of oxidative stress, and several neurodevelopmental outcomes related to autism in children. Participants included 169 mother-child pairs from the Early Autism Risk Longitudinal Investigation (EARLI), which enrolled mothers who had an autistic child from a previous pregnancy and followed them through a subsequent pregnancy and until that child reached age 3 years. Maternal urine samples were collected during the second trimester of pregnancy and were later measured for levels of isoprostanes. Child neurodevelopmental assessments included the Mullen Scales of Early Learning (MSEL), the Social Responsiveness Scale (SRS), and the Vineland Adaptive Behavior Scale (VABS), and were conducted around 36 months of age. Primary analyses examined associations between interquartile range (IQR) increases in 8-iso-PGF2α levels, and total composite scores from each assessment using quantile regression. In adjusted analyses, we did not observe statistically significant associations, though estimates suggested modestly lower cognitive scores (ß for MSEL = -3.68, 95% CI: -10.09, 2.70), and minor increases in autism-related trait scores (ß for SRS T score = 1.68, 95% CI: -0.24, 3.60) with increasing 8-iso-PGF2α. These suggestive associations between decreased cognitive scores and increased autism-related traits with increasing prenatal oxidative stress point to the need for continued investigation in larger samples of the role of oxidative stress as a mechanistic pathway in autism and related neurodevelopmental outcomes.

Brief Report: Under-Identification of Symptomatic Menopause in Publicly-Insured Autistic People.

Menopause is a normal part of aging and in the general population is associated with chronic conditions that impact health, mortality, and well-being. Menopause is experienced differently by autistic individuals, although no studies have investigated this topic in a large sample. The purpose of this study was to investigate rates of, and factors associated with symptomatic menopause among autistic individuals and to identify the prevalence of co-occurring conditions in symptomatic individuals. We included autistic females aged 35-70 years enrolled for 10 + months in 2014-2016 Medicare and/or Medicaid (n = 26,904), excluding those with gender dysphoria. Those with symptomatic menopause were compared to a non-symptomatic reference group on demographic, enrollment characteristics, and co-occurring conditions through logistic regression. Approximately 4% of publicly-insured autistic females aged 46-70 years had symptomatic menopause in their medical records. Intellectual disability was associated with a lower likelihood of symptomatic menopause, and being Medicare-enrolled or dual-enrolled was associated with higher likelihood of having symptomatic menopause recorded. In adjusted models, rates of ADHD, anxiety and depressive disorders, headache/migraine, altered sensory experiences, altered sexual function, and sleep disturbance were significantly higher in the symptomatic menopause sample compared to the reference group. More work to better support autistic women in discussing menopausal symptoms and co-occurring conditions with primary care providers is needed, particularly among those for whom self-report of symptoms are more challenging to ascertain. Factors associated with specific types of health care coverage warrant greater investigation to support better identification.

Examining associations between prenatal biomarkers of oxidative stress and ASD-related outcomes using quantile regression.

We examined associations between prenatal oxidative stress (OS) and child autism-related outcomes. Women with an autistic child were followed through a subsequent pregnancy and that younger sibling's childhood. Associations between glutathione (GSH), glutathione disulfide (GSSG), 8-oxo-deoxyguanine (8-OHdG), and nitrotyrosine and younger sibling Social Responsiveness Scale (SRS) scores were examined using quantile regression. Increasing GSH:GSSG (suggesting decreasing OS) was associated with minor increases in SRS scores (50th percentile ß: 1.78, 95% CI: 0.67, 3.06); no other associations were observed. Results from this cohort with increased risk for autism do not support a strong relationship between OS in late pregnancy and autism-related outcomes. Results may be specific to those with enriched autism risk; future work should consider other timepoints and biomarkers.

Brief Report: Healthcare Providers' Discussions Regarding Transportation and Driving with Autistic and Non-autistic Patients.

OBJECTIVE: To characterize healthcare and behavioral service providers' transportation-related discussions with their autistic and non-autistic patients. METHOD: 78 providers completed a cross-sectional survey assessing their transportation discussions with patients. We used Mann-Whitney U tests and chi-square tests to compare differences in provider reports by patient diagnosis. RESULTS: Compared with one in two providers who reported they discuss transportation with non-autistic patients, only one in five have these conversations with their autistic patients. Few (8%) providers felt prepared to assess driving readiness in autistic patients, yet only a quarter refer patients elsewhere. CONCLUSION: There is a critical need to develop resources for use in medical settings to effectively support autistic adolescents' independence and mobility as they transition into adulthood.

Real-World Crash Circumstances Among Newly Licensed Adolescent Drivers With and Without Attention-Deficit/Hyperactivity Disorder.

PURPOSE: Adolescents with attention-deficit/hyperactivity disorder (ADHD) have 30%-40% higher crash rates. However, we still do not understand which factors underlie heightened crash risk and if crash circumstances differ for drivers with ADHD. We compared prevalences of crash responsibility, driver actions, and crash types among adolescent and young adult drivers with and without ADHD who crashed within 48 months of licensure. METHODS: In this exploratory retrospective cohort study, we identified patients of Children's Hospital of Philadelphia's (CHOP) New Jersey (NJ) primary care locations who were born between 1987 and 2000, NJ residents, had their last CHOP visit ≥ age 12 years, and acquired a driver's license. We linked CHOP electronic health records to NJ's licensing and crash databases. ADHD diagnosis was based on International Classification of Diseases, Ninth Revision, Clinical Modification/International Classification of Diseases, Tenth Revision, Clinical Modification codes. Prevalence ratios were estimated using generalized estimating equation log-binomial regression. RESULTS: We identified 934 drivers with ADHD in 1,308 crashes and 5,158 drivers without ADHD in 6,676 crashes. Within 48 months postlicensure, drivers with ADHD were more likely to be at fault for their crash (prevalence ratio: 1.09 [1.05-1.14]) and noted as inattentive (1.15 [1.07-1.23]). With the exception that drivers with ADHD were less likely to crash while making a left/U-turn, we did not find substantial differences in crash types by diagnosis. Analyses also suggest females with ADHD may have a higher risk of colliding with a nonmotor vehicle and crashing due to unsafe speed than females without ADHD. DISCUSSION: The results suggest crash circumstances do not widely differ for drivers with and without ADHD but highlight several factors that may be particularly challenging for young drivers with ADHD.

Comparison of Motor Vehicle Crashes, Traffic Violations, and License Suspensions Between Autistic and Non-Autistic Adolescent and Young Adult Drivers.

OBJECTIVE: One-third of autistic individuals obtain a driver's license by age 21 years; however, prior studies suggest they may be at heightened risk for motor vehicle crashes. We compared objective rates of crashes, traffic violations, and license suspensions for newly licensed autistic and non-autistic adolescents. METHOD: This retrospective cohort study included New Jersey residents born from 1987 through 2000 who were patients of the Children's Hospital of Philadelphia health care network. Electronic health records were linked with statewide driver licensing and crash databases. Autism status was classified via International Classification of Diseases (ICD) diagnostic codes; individuals with intellectual disability were excluded. We compared rates among 486 autistic and 70,990 non-autistic licensed drivers over their first 48 months of driving. Furthermore, we examined the proportion of crashes attributed to specific driver actions and crash types. RESULTS: Compared with non-autistic drivers, autistic drivers were estimated to have lower average monthly rates of crash involvement (adjusted rate ratio (adjRR) = 0.89, 95% CI = 0.75-1.05), moving violations (adjRR = 0.56, 95% CI = 0.48-0.67), and suspensions (adjRR = 0.32, 95% CI = 0.18-0.58). Among drivers involved in a crash, autistic drivers were half as likely to crash because of unsafe speed, but substantially more likely to crash because of their failure to yield to a vehicle/pedestrian and while making left-turns or U-turns. CONCLUSION: Newly licensed autistic adolescent drivers have similar to lower estimated rates of adverse driving outcomes; the extent to which these can be attributed to different driving patterns is a critical point for future investigation. There were several notable differences in the characteristics of these crashes, which directly inform interventions to improve driving safety of autistic adolescent drivers.

Missed opportunities to advance knowledge on traffic safety: Accessibility of driver licensing and crash data for scientific research.

OBJECTIVE: Identifiable individual-level driver licensing and motor vehicle crash data are essential to advancing transportation safety research. However, epidemiologic studies using such data are rare, which may reflect their inaccessibility. We conducted a legal mapping study to evaluate US state laws regulating access to driver licensing and motor vehicle crash data for use in scientific research. METHODS: Legal statutes regulating the release of driver licensing and motor vehicle crash data for all 50 US states and the District of Columbia (D.C.) were retrieved. Legal text was evaluated to determine whether these jurisdictions authorize release of identifiable individual-level licensing and crash data for use in non-governmental research. RESULTS: Thirty-six states and D.C. explicitly authorize release of identifiable individual-level licensing data to researchers. Only five states and D.C. authorize release of identifiable individual-level crash records. No states explicitly prohibit the release of individual-level data about licensing records and only three states prohibit release of individual-level crash record data, meaning that in many states it is ambiguous whether and when releasing such data to researchers is permitted. CONCLUSIONS: It is important to understand why licensing data are not used more frequently in transportation safety research given that many state laws permit access for non-governmental researchers. Reforming state laws to clarify and increase access to identifiable individual-level crash report data is an important priority for transportation safety advocates and researchers.

Chronic Care for Attention-Deficit/Hyperactivity Disorder: Clinical Management from Childhood Through Adolescence.

OBJECTIVE: Impairments generally persist when children diagnosed with attention-deficit/hyperactivity disorder (ADHD) mature into adolescence. To examine changes in ADHD care during the transition from childhood to adolescence, we conducted a retrospective, longitudinal cohort study of patients diagnosed with ADHD before the age of 10 years to assess changes from preadolescence through adolescence in (1) frequency by which primary care providers offer ADHD care to patients, (2) range of concerns assessed during patient encounters, and (3) treatments implemented or recommended. METHODS: We identified patients from 3 practices included in a large primary care network who (1) were born between 1996 and 1997, (2) were diagnosed with ADHD before the age of 10 years, and (3) received primary care continuously from age 9 through late adolescence. Clinical care was compared among patients in preadolescence (age 9-11), early adolescence (age 12-14), and late adolescence (age 15-18). RESULTS: Children diagnosed with ADHD before the age of 10 years were less likely to have a documented visit for ADHD during late adolescence (41% of patients) compared with preadolescence (63%, p < 0.001). Evidence of monitoring for depression, suicide, and substance abuse increased from preadolescence to adolescence (p < 0.001) and occurred in about 90% of adolescent patients. However, monitoring for risky sexual activity occurred in only about 50% of adolescents. Discussions of medication diversion and driver readiness were essentially not documented. CONCLUSION: The findings raise concerns about how primary care providers manage adolescents with a history of ADHD. Improving monitoring of risky sexual behavior and driver readiness and providing patient education about medication diversion are needed.

Catalyzing traffic safety advancements via data linkage: Development of the New Jersey Safety and Health Outcomes (NJ-SHO) data warehouse.

Objective: Our objective is to describe the development of the New Jersey Safety and Health Outcomes (NJ-SHO) data warehouse, a unique and comprehensive data source that integrates various state-level administrative databases in New Jersey to enable the field of traffic safety to address critical, high-priority research questions.Methods: We have obtained full identifiable data from the following statewide administrative databases for the state of New Jersey: (1) driver licensing database; (2) Administration Office of the Courts data on traffic-related citations; (3) police-reported crash database; (4) birth certificate data; (5) death certificate data; and (6) hospital discharge data as well as (7) childhood electronic records from New Jersey residents who were patients of the Children's Hospital of Philadelphia pediatric health care network and (8) census tract-level indicators. We undertook an iterative process to develop a linkage algorithm in LinkSolv 9.0 software using records for individuals born in select birth years (1987 and 1988) and subsequently execute the linkage for the entire study period (2004-2017). Several metrics were used to evaluate the quality of the linkage process.Results: We identified a total of 62,685,619 records and 19,247,363 distinct individuals; 10,352,998 of these individuals had more than one record brought together during the linkage process. Our evaluation of this linkage suggests that the linkage was of high quality.Conclusions: The resulting NJ-SHO data warehouse will be one of the most comprehensive and rich traffic safety data warehouses to date. The warehouse has already been utilized for numerous studies and will be fully primed to support a host of rigorous studies, both in and beyond the field of traffic safety.

Teaching Autistic Adolescents and Young Adults to Drive: Perspectives of Specialized Driving Instructors.

Background: Limited transportation access may curtail education, occupational training, social, and community engagement opportunities for autistic adolescents. Nearly one-third of autistic adolescents obtain a driver's license by age 21 years, which may increase mobility and improve autistic adolescents' transition to independent adulthood. This study examined driving instructors' perspectives and experiences of teaching autistic adolescents to drive to facilitate a safe learning-to-drive process. Methods: We conducted interviews with driving instructors with specialized training to teach autistic adolescents to drive. Participants were recruited through purposive and snowball sampling. Semistructured interviews investigated family engagement; instructor observations; instructors' teaching strategies; and recommendations for improving the learning-to-drive process. A directed content analysis approach informed the development of a coding scheme. Coded transcripts were reviewed to identify themes. Results: We interviewed 17 driving instructors who primarily identified as occupational therapists. Key themes included importance of parent engagement; fostering independence; individualization of instructional strategies; and enhancements to the learning-to-drive process. Parent engagement prepared autistic students to undertake on-road instruction and supported skill development. While some families paradoxically limited adolescents' independence (e.g., heavy supervision while cooking, limiting participation in bicycling or lawn mowing) despite wanting them to pursue licensure, instructors believed that demonstrating independence in such life skills was necessary for safely undertaking on-road instruction. Instructors shared how they individualized assessments and tailored lessons over a prolonged period of time to promote safety and skill acquisition. Specific recommendations for enhancing the learning-to-drive process included standardizing instructional approaches and refining clinical assessment tools to determine driver readiness. Conclusions: Our findings highlight the need for parental engagement to support the learning-to-drive process and to foster the independence necessary to undertake highly individualized driving instruction. Efforts to increase families' access to tools to promote driving readiness and establishing best practices for instructors may enhance the efficiency and standardization of the learning-to-drive process. LAY SUMMARY: Why was this study done? Becoming licensed to drive increases the independence and mobility of adolescents, potentially improving access to educational, occupational training, social, and community engagement opportunities. Driving instructors are a critical resource for families, particularly for autistic adolescents who may receive training from specialized instructors, such as occupational therapists (OTs). However, little is known about the process and experience of teaching autistic adolescents to drive, which limits the ability to provide adolescents and families with guidance to prepare for and support the learning-to-drive process. What was the purpose of this study? The goal of this study was to examine the experiences and perspectives of driving instructors who provide behind-the-wheel training for autistic adolescents and young adults. What did the researchers do? We conducted semistructured interviews with specialized driving instructors who had experience working with autistic youth. Team members transcribed the interviews, coded them, and summarized common themes. What were the results of the study? We interviewed 17 driving instructors who primarily identified as OTs. Key themes included the importance of parents as partners, the need to encourage independence in daily living skills before driving, and the individualized approach used when working with autistic adolescents. Instructors provided suggestions for enhancing the learning-to-drive process and supporting nonspecialized instructors who also provide training to adolescents. Suggestions included enhancing the use of state-level Vocational Rehabilitation Services to provide financial support for instruction, use of a life skills checklist to identify and promote prerequisite driving skills, parent-supervised practice driving (including commentary driving where adolescents narrate driving instructions to a driver), and individualization of instruction tailored to adolescents' particular needs. What do these findings add to what was already known? These results inform efforts to prepare parents, nonspecialized instructors, and autistic adolescents themselves for undertaking on-road instruction and licensure. Instructors recommended that parents help adolescents develop independence, including skills to use alternative forms of transportation and practice predriving skills, such as navigation. Furthermore, these results highlight the need to establish best practices for instruction and refinement of tools and strategies used by both specialized and general driving instructors. What are potential weaknesses in the study? Our recruitment approach may have led instructors with similar training or opinions to participate, so important aspects of teaching autistic drivers may have not been elicited. We did not interview general driving instructors who may have different perspectives and needs that were not discussed. We were unable to determine how characteristics such as work location, race/ethnicity, or years in practice may have influenced participants' responses. How will these findings help autistic adults now or in the future? Results from this study identify tools, such as a life skills checklist, and practice activities, such as commentary driving, that can be used by families to support autistic adolescents who are learning to drive. This study highlights the need to examine experiences with the learning-to-drive process from autistic adolescents and parents themselves to understand their needs and recommendations for enhancing the process of safely learning to drive.

Traffic Crashes, Violations, and Suspensions Among Young Drivers With ADHD.

OBJECTIVES: To compare monthly rates of specific types of crashes, violations, and license suspensions over the first years of licensure for drivers with and without attention-deficit/hyperactivity disorder (ADHD). METHODS: We identified patients of New Jersey primary care locations of the Children's Hospital of Philadelphia who were born in 1987-1997, were New Jersey residents, had their last primary care visit at age ≥12 years, and acquired a driver's license (N = 14 936). Electronic health records were linked to New Jersey's licensing, crash, and violation databases. ADHD diagnosis was based on International Classification of Diseases, Ninth Revision, Clinical Modification diagnostic codes. We calculated monthly per-driver rates of crashes (at fault, alcohol related, nighttime, and with peers), violations, and suspensions. Adjusted rate ratios were estimated by using repeated-measures Poisson regression. RESULTS: Crash rates were higher for drivers with ADHD regardless of licensing age and, in particular, during the first month of licensure (adjusted rate ratio: 1.62 [95% confidence interval: 1.18-2.23]). They also experienced higher rates of specific crash types: their 4-year rate of alcohol-related crashes was 2.1 times that of drivers without ADHD. Finally, drivers with ADHD had higher rates of moving violations (for speeding, seat belt nonuse, and electronic equipment use) and suspensions. In the first year of driving, the rate of alcohol and/or drug violations was 3.6 times higher for adolescents with ADHD. CONCLUSIONS: Adolescents with ADHD are at particularly high crash risk in their initial months of licensure, and engagement in preventable risky driving behaviors may contribute to this elevated risk. Comprehensive preventive approaches that extend beyond current recommendations are critically needed.

Association Between Medicaid Waivers and Medicaid Disenrollment Among Autistic Adolescents During the Transition to Adulthood.

This cohort study examines whether Medicaid waivers were associated with a reduced risk of Medicaid disenrollment among autistic adolescents who are transitioning to adulthood.