Updates to the Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda.

INTRODUCTION: Autistic individuals, now representing one in 36 individuals in the U.S., experience disproportionate physical health challenges relative to non-autistic individuals. The Health Resources and Services Administration's (HRSA) Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multi-center Research Network that aims to increase the health, well-being, and quality of life of autistic individuals. The current paper builds on the initial AIR-P Research Agenda (proposed in Year 1) and provides an updated vision for the Network. METHODS: Updates to the Research Agenda were made via the administration of a Qualtrics survey, and disseminated widely to all AIR-P entities, including the Research Node Leaders, Steering Committee, Autistic Researcher Review Board, and collaborating academic and non-academic entities. Network members were tasked with evaluating the Year 1 Research Agenda and proposing additional priorities. RESULTS: Within each Research Node, all Year 1 priorities were endorsed as continued priorities for research on autism and physical health. Specific topics, including co-occurring conditions and self-determination, advocacy, and decision-making, were particularly endorsed. Opportunities for exploratory studies and intervention research were identified across Research Nodes. Qualitative responses providing feedback on additional research priorities were collected. CONCLUSION: The updated AIR-P Research Agenda represents an important step toward enacting large-scale health promotion efforts for autistic individuals across the lifespan. This updated agenda builds on efforts to catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health promotion.

The Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda.

OBJECTIVES: In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda. METHODS: Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement. RESULTS: Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities. CONCLUSIONS: The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion.

A Residency Program Curriculum to Improve Health Care Transitions for Autistic Individuals.

OBJECTIVES: Physical and mental health outcomes of autistic individuals deteriorate during transition to adulthood. The study aims to identify opportunities to improve physician knowledge in health-care transitions (HCT) for autistic individuals by understanding perceived versus experienced facilitators and barriers in overall HCT curriculum implementation in graduate medical education. METHODS: Medicine-Pediatrics program directors participated in a Health Care Transition Residency Curriculum Collaborative Improvement Network and used an iterative process to develop and improve HCT curricula. Pre- and postcollaborative semistructured interviews were administered to program directors. The study occurred over 9 months (July 2018-February 2019). Recurring interview themes were analyzed utilizing Dedoose qualitative coding software and presented utilizing percentages and proportions. RESULTS: Most program directors developed curricula in response to a gap in their current transition curricula. All program directors partially or completely met their goals during the collaborative. The most common types of curricular delivery were didactic (65%) and clinical experience-based (53%). Some tested unique delivery platforms, like the electronic medical record system (29%) and online modules (24%). Program directors often involved residents in the curricular development process and overwhelmingly (65%) felt this was a major facilitator. Competing priorities of faculty (71%) and of residents (53%) were the most common barriers. CONCLUSIONS: Gaps in HCT curricula delivery were primarily attributed to suboptimal health care systems where training occurs, though existing clinical experiences and diverse learning modalities were successfully leveraged. Using a quality improvement framework and actively engaging resident trainees in curriculum development were successful strategies programs used in the development of HCT curricula.

Health Needs and College Readiness in Autistic Students: The Freshman Survey Results.

With an increase in the diagnosis of autism spectrum disorder in the United States, many of whom have higher intellectual ability, there is a predicted increase in the number of college-bound students. Affected young adults face a "Services Cliff" as they transition into adulthood. Our study examined a nationally represented sample of freshman students and found that academic achievements in autistic students are comparable to their peers when they first enter college. The students however have more mental health and physical health problems compared to their non-autistic peers. Poor health maybe a major contributing factor to the lower graduation rates among autistic students. College-bound autistic students may continue to require services through college for them to be successful and graduate.

A Multi-Institutional Collaborative To Assess the Knowledge and Skills of Medicine-Pediatrics Residents in Health Care Transition.

Background Pediatric to adult health care transition (HCT) is an essential process in the care of youth with special health care needs (YSHCN). Many internal medicine-pediatrics (med-peds) residency programs have developed curricula to teach transition knowledge and skills for the care of YSHCN. Objective Using a national med-peds program director quality improvement collaborative to improve transition curriculum, we aim to identify curricular content areas of improvement by describing baseline trainee knowledge and skills taught through existing transition curricula in med-peds programs. Methods We analyzed data collected during the 2018-2019 national med-peds program director quality improvement collaborative to improve transition curriculum. Program directors assessed their programs, and trainees assessed themselves on five transition goals by completing a Likert-scale questionnaire. In addition, trainees received an objective assessment of their knowledge through a multiple-choice questionnaire (MCQ). Results All 19 programs in the collaborative, and 193 of 316 trainees from these programs, completed the questionnaires. Most programs were based at academic centers (68%) and provided transition training via didactics (63%) and/or subspecialty rotations (58%). More programs had high confidence (95%) than trainees (58%) in goal 1 (knowledge and skills of the issues around transition), whereas more trainees had high confidence (60%) than programs (47%) in goal 2 (understanding the developmental and psychosocial aspects of transition). Programs and trainees self-assessed lower in goals related to health insurance, educational and vocational needs, and application of health care system knowledge to the practice environment (goals 3, 4, and 5, respectively). Conclusions Using the assessments of the program directors and resident trainees, we identified subject areas for improvement of transition curricula, including health insurance and the application of health care system knowledge to the practice environment.