Health Care Transitions Research Network (HCT-RN) Updates
December 22, 2016
The Health Care Transitions Research Network (HCT-RN) for Autism Spectrum Disorder (ASD) and Other Developmental Disabilities was funded to support the creation of an interdisciplinary, multicenter research forum for scientific collaboration and infrastructure-building with a focus on research designed to improve health care transitions and promote an optimal transition to adulthood (including physical, psychosocial, educational, and vocational outcomes) among youth and young adults with autism spectrum disorder (ASD). Since April 2016, our network has been actively engaged in the following research and practice improvement efforts related to the transition to adulthood of youth with ASD.
Building on the first edition of the National Autism Indicators Report (https://shar.es/1DW8Pg) which found that a third of young adults never got work or continued education between high school and their early 20s, Dr. Paul Shattuck and his partners at the A.J. Drexel Autism Institute published the second National Autism Indicators Report (https://shar.es/1DWDnd) exploring the use of vocational rehabilitation (VR) services by individuals on the autism spectrum. This second edition of the National Autism Indicators Report details the characteristics of individuals with autism who used VR services, how VR services were used, employment indicators of individuals with autism who utilized VR services, as well as compared services and outcomes across states and disability type. Dr. Shattuck and several HCT-RN members also attended the 2016 International Meeting for Autism Research (IMFAR) in Baltimore, MD, where they presented in multiple poster and panel sessions and Dr. Shattuck provided a keynote address (http://bit.ly/2h7DpBq) on "moving the needle" to improve outcomes for adults on the autism spectrum by conducting research using a life course perspective.
To promote best practices in health care transitions in national physician professional organizations, Dr. Kuo developed an official positions/statement manuscript on best practices for health care transition for the Society for Adolescent Health and Medicine (SAHM), co-authored a manuscript with learning objectives and curriculum content for medical residents developed by members of the Health Care Transitions Research Consortium, the Transition Committee of the Medicine-Pediatrics Program Directors Association, and the Society for General Internal Medicine's (SGIM) Task Force on Adults with Chronic Conditions Originating in Childhood, and worked with Dr. Debra Lotstein at Children's Hospital Los Angeles to develop a national residency curriculum designed to improve health care transitions among youth and emerging adults with special health care needs (including those with ASD). Dr. Kuo also led the development of standardized forms (available for download and use at http://bit.ly/1XdapaB) to improve transitions for youth with intellectual and developmental disabilities (including ASD) with input from staff at Got Transition and members of an American College of Physicians (ACP) work group and co-authoring and editing a textbook entitled Care of Adults with Chronic Childhood Conditions for primary care physicians, which includes a chapter on care of young adults with ASD which was written by members of the HCT-RN Advisory Board.
Finally, in April 2016, the HCT-RN built upon a scan of the existing literature and the ideas that were discussed during our 2015 launch meeting to launch a two-stage survey of our network members with the goal of identifying research priorities that have the greatest potential to improve the transition experiences and outcomes of individuals on the autism spectrum. Results from this literature scan and network survey were analyzed and will be reported in an official national agenda setting article by the HCT-RN, which we are working to publish together with a series of related papers by HCT-RN network members focused on transitions over the life course of individuals on the autism spectrum. After many months of collaboration and coordination with the members from the HCT-RN, Life Course Research Network (LCRN), and the A.J. Drexel Autism Institute, these articles - including three opinion pieces by self-advocates - are now in the final stages of preparation for review as a packaged journal supplement in Pediatrics. We are hoping to publish this journal supplement in April 2017, to coincide with Autism Awareness month, but short layperson-friendly versions of these articles will be published on the HCT-RN website (http://www.autismtransition.net), beginning in mid-January 2017, in anticipation of the supplement's official publication date. Please stay tuned to our website for further updates.
Paul Shattuck, co-director of HCT-RN, keynotes the International Meeting for Autism Research.
