AIR-P Transitions to Learning Network model and Engages in Multi-Site Research Projects

April 12, 2017

The Autism Intervention Research Network on Physical Health (AIR-P), led by Karen Kuhlthau, PhD, conducts research on evidence-based interventions to improve the physical health and well-being of children and adolescents with autism spectrum disorders (ASD) and other developmental disabilities, with an emphasis on underserved communities. Two key goals of the AIR-P network are 1) to conduct multi-site research on evidence-based interventions that improve physical health of children and adolescents with ASD and developmental disorders, especially underserved populations and 2) to transform AIR-P into a multi-site Learning Network (LN) which will provide a collaborative laboratory for developing and testing evidence-based interventions and accelerating the adoption of effective interventions and system management approaches into practice.

During the current funding cycle, the AIR-P has two signature research projects in addition to two smaller "pilot to proposal" studies to help accomplish the first network goal. Additionally, the AIR-P is working collaboratively with the James M. Anderson Center for Health Systems Excellence (AC) at Cincinnati Children's Hospital Medical Center on the Autism Learning Network project which accomplishes the second network goal.

Signature Research Projects

ECHO Autism is the first of the AIR-P's signature projects. ECHO (Extension for Community Healthcare Outcomes) represents an innovative telemedicine-based platform that connects local PCPs with specialists at academic medical centers during weekly ECHO Autism clinics. During ECHO Autism clinics, specialists provide education in best-practice treatment protocols, case-based learning, and co-management. This multi-site study builds upon an ECHO Autism pilot study that was done at the University of Missouri's Thompson Center for Autism in 2015.

This study will examine the effectiveness of ECHO Autism in increasing 1) rates of ASD screening during 18-month well-child visits in underserved communities, 2) the proportion of underserved children with ASD who receive screening, appropriate care for sleep problems and constipation, and 3) the monitoring of underserved children with ASD who are also taking psychotropic medications. These outcomes will be achieved by increasing provider knowledge, improving clinical practice/behavior, and enhancing provider self-efficacy in caring for children with ASD across a large multisite sample of PCPs working in underserved communities. This study will have a staggered roll-out with 2 sites launching every 3 months over a 2 year study period. Currently, 6 out of 10 study sites are either recruiting study participants or actively hosting ECHO Autism clinics.

The AIR-P Dental Study, "Improving Participation in Dental Care and Oral Health Outcomes for Underserved Children with ASD", is the network's second signature research project. This study is a randomized controlled trial (RCT) to compare the efficacy of the established AIR-P Dental Toolkit to a combined regimen involving the Dental Toolkit and a parent-mediated behavioral intervention. Study objectives include improving home dental hygiene, oral health, and compliance with dental procedures in underserved populations with ASD. At this time families are being enrolled and randomized to intervention arms of the study.

Other Research Projects

AIR-P recently funded two new research projects under RFA ATN-AIR-16-09: "Pilot to Proposal". This mechanism provides 15 months of support for the development and implementation of a study to show overall feasibility of the proposal and to provide adequate data demonstrating that expansion to a multi-center study will provide a clinically important effect. The pilot studies include: "Two-Phase Study of Probiotics for Quality of Life through GI and Emotional Stability in Youth with ASD and Anxiety: Single-Site Pilot Trial Followed by 3-Site RCT" by L. Eugene Arnold, MD at The Ohio State University and "Physical Exercise to Reduce Anxiety in Underserved Children with ASD" by Jean Gehricke, PhD at the University of California, Irvine.

Autism Learning Network

Since the start of the current funding cycle, the AIR-P has been transitioning into a Learning Network (LN) in collaboration with James M. Anderson Center for Health Systems Excellence (AC) at Cincinnati Children's Hospital Medical Center. LNs use ongoing and transparent outcome measurement, shared learning across practices, and quality improvement methods, to standardize care processes across systems while customizing care to individual patient needs. They provide data for comparative effectiveness research that can lead to new interventions and rapid implementation of these in treatment of physical conditions. All five LNs supported by the AC have improved outcomes and developed new research knowledge.

Since fall 2014, family representatives, network clinicians and researchers, AC faculty, AS representatives, and Network Coordinating Center staff have used a structured design process to establish LN goals, with a main focus on identifying barriers and successful strategies for optimizing physical health for all children with ASD. The initial target population includes children ages 6-12 seen at sites within the last 12 months. The network is using tests of change (PDSAs) at the site level and partner with community services and primary care practices and providers.

Other AIR-P Network Activities

The AIR-P continues to provide opportunities for researchers from across the network to collaborate with each other as well as other CAAI sponsored programs such as LEND and Developmental-Behavioral Pediatrics Training Programs. Successful partnerships with these programs have increased AIR-P presence at various scientific meetings, including abstracts at IMFAR and PAS, and papers submitted for publication. So far for 2017, AIR-P network members will present at IMFAR, 8 posters to be presented, PAS, 3 posters and 1 panel to be presented, and have submitted

Additionally, the AIR-P provides continuous support to investigators interested in mining data from the Autism Treatment Network (ATN) Registry. We have developed a Request for Data (RFD), which allows individuals to submit a formal request to obtain summary data from the ATN Registry, which is supported in collaboration with AIR-P. Past analyses by external investigators have led to dissertations and manuscripts by trainees in pediatrics and psychology as well as other junior faculty members at various institutions. Individuals interested in learning more about the registry data should visit http://asatn.org/request/data.

The AIR-P continues to hold its monthly webinar series titled "Advances in Autism Research & Care (AARC)" which alternates autism research and care themes, and is available to all AIR-P/ATN network members, CAAI-sponsored programs, the entire LEND and DBP Fellowship networks, various other autism and pediatric organizations, collaborators, primary care providers, as well as autism advocates. Research webinars feature AIR-P investigators, often junior investigators, presenting their work in various stages of development while care focused themes cover hot topics in the field of autism and promote idea generation for future research. If you're interested in being added to the distribution list for information on these webinars, please email Audrey Wolfe, Research Coordinator, at awolfe2@mgh.harvard.edu. Archived webinars can be viewed by visiting the network's YouTube page: http://www.youtube.com/asatnairpnetwork.

For more information on the AIR-P, please visit our public website: http://www.airpnetwork.org