AIR-P Network Activities

April 19, 2018

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 reaching underserved communities. The key goals for the AIR-P Network are two-fold:

  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.
  2. To transform AIR-P into a multi-site Autism Learning Health Network (ALHN) 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 multiple research projects and 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 Health Network project.

RESEARCH ACTIVITIES

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 examines 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. Participating ATN sites have been rolling out in a step-wedge fashion since September 2016.  To date, 8 out of 10 study sites have completed their 6-month ECHO Autism clinic cycles and the final 2 sites began their 6 month clinic cycle in December 2017. 147 primary care physicians have enrolled in the ECHO Autism study. Final data collection for the study will occur in September 2018 with manuscripts to follow.

The AIR-P Dental Study, "Improving Participation in Dental Care and Oral Health Outcomes for Underserved Children with ASD," is a randomized controlled trial 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.  The study teams at the University of California (Irvine) and Nationwide Children's Hospital have enrolled 60 families into the study to date.

The AIR-P PETRA Study, "Physical Exercise to Reduce Anxiety" has successfully completed its initial 1-year pilot phase and is currently expanding into a 3-year multi-site study to examine the feasibility and efficacy of a physical exercise intervention to reduce anxiety in children from underserved families. The physical exercise program is designed to incorporate the new key guidelines for physical exercise in children from the Centers for Disease Control. Compliance, parent-rated anxiety, and salivary cortisol will be measured before and after completion of the exercise and control group interventions. Such a program will aid in the development of an evidence-based physical exercise intervention toolkit for the treatment of anxiety as well as other behaviors and improvement of physical health in children with ASD from underserved populations.

AUTISM LEARNING NETWORK

Since the start of the current funding cycle, the AIR-P has been transitioning into a Learning Health Network (LHN) in collaboration with James M. Anderson Center for Health Systems Excellence (AC) at Cincinnati Children's Hospital Medical Center. LHNs 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.

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 the Autism Learning Health network (ALHN) goals, with a main focus on identifying barriers and successful strategies for optimizing physical health for all children with ASD. The target population includes children ages 3-12 seen at sites for follow-up visits within the last 12 months. Currently, the network is using small tests of change (PDSAs) at the site level to establish best practice around enrolling families into the ALHN and collecting patient/proxy reported outcome (PRO) data from enrollees. Recently, the ALHN received PCORnet funding to collaborate with the Interactive Autism Network (IAN) to develop best practices for collecting PRO data.

AIR-P EFFORTS

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. In 2017, AIR-P network members were represented with 8 posters at IMFAR and 3 posters and 1 panel at PAS.

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. 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 host a monthly webinar series titled "Advances in Autism Research & Care (AARC)" which 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, and autism advocates. Webinars feature both care providers and investigators presenting to a diverse audience of parents, clinicians, researchers, and students. Investigators, including both seasoned and junior investigators at AIR-P, are invited to present their work on various stages of research and study development. Care focused themes cover hot topics in the field of autism and promote idea generation for future research. Surveys are sent to our network as well as parent partners asking for topic suggestions to ensure we are presenting relevant information that our audience can engage with. If you're interested in being added to the distribution list for information on these webinars, please email Megan Eaves, Research Coordinator, at meaves@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.