MCH Health Care Transitions Research Network (HCT-RN) for Youth and Young Adults with Autism Spectrum Disorders (ASD)
Grantee: UCLA
Principal Investigator: Alice Kuo
Project Number: UA3MC27364
Project Date: 9/1/2014
Final Report
Age group(s)
- Adolescence (12-18 years)
- Young Adulthood (19-25 years)
Abstract
There is a critical lack of research on life course influences at the person, family, community, health system, and policy levels prior to, during, and following the transition of youth and young adults with ASD from pediatric to adult care settings.Goals and Objectives:
The aim of this proposal is 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 among youth and young adults with ASD, including optimal physical, psychosocial, educational, and vocational outcomes. To accomplish this aim, we propose the following goals: 1. Develop a national research agenda designed to improve health care transitions and promote an optimal transition to adulthood among youth and young adults with ASD, including healthy physical, social, and vocational outcomes. 2. Identify cutting edge research priorities and use the national research agenda created by the Network to actively guide the Network's implementation of research studies through both MCHB and external funding sources. 3. Establish transition care guidelines and conduct quality improvement projects to improve transition care. 4. Disseminate critical information and foster continued education activities on its research findings to inform researchers, professionals, policy makers, the public, and other stakeholders, including families with youth and young adults with ASD. 5. Improve the nation's capacity to conduct research on health care transitions among youth and young adults with ASD. PROPOSED ACTIVITIES AND TARGET POPULATION(S): Building upon our success with the MCH Life Course Research Network (www.lcrn.net), we will convene a group of experts and stakeholders to create the HCT-RN research agenda and foster the capacity of HCT-RN members to carry out this agenda. The focus of the HCT-RN research is youth and young adults with ASD.
Coordination:
The HCT-RN will coordinate with Title V agencies, Autism Speaks and other advocacy groups, and professional organizations such as INSAR, MPPDA, SGIM, AAP and APA. PRODUCTS: In addition to an interactive website with extensive social media capacity, we expect to commission 20-30 research papers over the course of the 3 years of the project period.
Evaluation:
Process and outcome measures will determine the success of the HCT-RN, including number of members for the HCT-RN, number of hits to the website, participation in network design meeting, and number of additional research papers in the field on HCT for ASD.
Publications
Listed is descending order by year published.
Anderson C, Lupfer A, Shattuck PT. Barriers to receipt of services for young adults with autism. Pediatrics. 2018;141(suppl 4):S300-S305.
Anderson KA, Roux AM, Kuo A, Shattuck PT. Social-ecological correlates in adult autism outcome studies: a scoping review. Pediatrics. 2018;141(suppl 4):S306-S317.
Anderson KA, Sosnowy C, Kuo AA, Shattuck PT. Transition of individuals with autism to adulthood: a review of qualitative studies. Pediatrics. 2018;141(suppl 4):S318-S327.
Davignon MN, Qian Y, Massolo M, Croen LA. Psychiatric and medical conditions in transition-aged individuals with austism spectrum disorder. Pediatrics. 2018;141(suppl 4):S335-S345.
Demer LL. The autism spectrum: human rights perspectives. Pediatrics. 2018;141(suppl 4):S369-S372.
Hassrick EM, Shattuck P, Carley K. Network measures of collaborative support for young adults with autism. Pediatrics.2018;141(suppl 4):S287-S292.
Kapp SK. Social support, well-being, and quality of life among individuals on the autism spectrum. Pediatrics. 2018;141(suppl 4):S362-S368.
Karp EA, Dudovitz R, Nelson BB, et al. Family characteristics and children’s receipt of autism services in low-resourced families. Pediatrics. 2018;141(suppl 4):S280-S286.
Kuo AA, Anderson KA, Crapnell T, Lau L, Shattuck PT. Introduction to transitions in the life course of autism and other developmental disabilities. Pediatrics.2018;141(suppl 4):S267-S271.
Kuo AA, Ciccarelli MR, Sharma N, Lotstein DS. A health care transition curriculum for primary care residents: identifying goals and objectives. Pediatrics. 2018;141(suppl 4):S346-S354.
Kuo AA, Crapnell T, Lau L, Anderson KA, Shattuck P. Stakeholder perspectives on research and practice in autism and transition. Pediatrics. 2018;141(suppl 4):S293-S299.
Lappé M, Lau L, Dudovitz RN, Nelson BB, Karp EA, Kuo AA. The diagnostic odyssey of autism spectrum disorder. Pediatrics. 2018;141(suppl 4):S272-S279.
Paradiz V, Kelso S, Nelson A, Earl A. Essential self-advocacy and transition. Pediatrics. 2018;141(suppl 4):S373-S377.
Rast JE, Shattuck PT, Roux AM, Anderson KA, Kuo A. The medical home and health care transition for youth with autism. Pediatrics. 2018;141(suppl 4):S328-S334.
Shattuck PT, Lau L, Anderson KA, Kuo AA. A national research agenda for the transition of youth with autism. Pediatrics. 2018;141(suppl 4):S355-S361.
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