AIR-P Network Activities - April 2019

April 17, 2019

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 active research projects and is working collaboratively with Autism Speaks (AS) on network activities including the Autism Learning Health Network project.

AIR-P RESEARCH ACTIVITIES

ECHO (Extension for Community Healthcare Outcomes) Autism represents an innovative telemedicine-based platform that connects local PCPs with autism specialists across our network medical centers. During ECHO Autism clinics, specialists provide education in best-practice treatment protocols, case-based learning, and co-management. This 10-site study (n=147) builds upon a pilot study that was conducted 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 sites have been rolling-out in a step-wedge fashion since September 2016. To date, all of the 10 study sites have completed their 6-month ECHO Autism clinic cycles. 147 primary care physicians were enrolled in the ECHO Autism study. Data collection for the study was completed in September 2018 with data analysis and manuscript preparation currently underway. Funding from Autism Speaks has allowed sites to continue their ECHO Autism work after the research study completion.

With the success of ECHO Autism, the AIR-P supported a 12-week pilot study aimed at improving healthcare transitions for individuals with ASD. ECHO Autism: Transition to Adulthood connected 16 PCPs (6 Pediatricians, 9 Family Medicine Physicians, and 1 Internal Medicine Physician) with autism experts throughout the US. During the clinics, participants presented case studies and learned best-practices from our expert team on a variety of autism specific and healthcare transition topics. The research team also conducted focus groups with ten of the participants to learn how the program can better address the needs of future participants. Data collection for the study was completed in February 2019 with plans for a final manuscript to be submitted by June 2019.

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. As of December 2018, the study teams at the University of California (Irvine) and Nationwide Children's Hospital have completed enrollment (N= 119) and are working to complete final data collection leading to study close-out by summer 2019.

The AIR-P PETRA Study, "Physical Exercise To Reduce Anxiety" successfully completed its initial 1-year pilot phase and has now expanded 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. To date, 53 families have been enrolled in the PETRA expansion phase.

The one-year pilot study, "Ameliorate Childhood Obesity Risk from Newer Antipsychotics for individuals with Autism Spectrum Disorder (ACORN)" will adapt and test an empirically-validated pediatric weight management program (Healthy Habits for Life; HH4L) for youth with ASD who gain weight on second-generation antipsychotics. The investigative team at the University of Pittsburgh will adapt the HH4L program with 25 patients to examine whether participating in the program is feasible for youth with ASD and their families. This grant will serve as a pilot mechanism to expand upon the findings in multiple ATN sites in a large-scale, randomized control trial while measuring cardiometabolic outcomes. This study period is scheduled to end in December 2019.

AUTISM LEARNING NETWORK

Sinc the start of the current funding cycle, the AIR-P has been transitioning into a Learning Health Network (LHN) in collaboration with Autism Speaks (AS) and the 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 INSAR and PAS, and papers submitted for publication. In 2018, AIR-P network members were represented with 7 posters at INSAR, 1 poster at APA, and 3 posters at PAS. So far in 2019, 11 posters have been accepted to be presented at INSAR and 2 posters have been accepted at PAS.

In January 2019, the Autism Treatment Network (ATN) Medical Registry began the transition to an open-access platform. This will allow de-identified registry data to be readily available for secondary data analysis research. The ATN Medical Registry includes more than 7,000 participants. The Registry includes behavioral and medical data from a subgroup of children seen for care at Network sites. A subset of these children provided longitudinal data as well as biomaterials to the Registry. Data from these participants has yielded important insights regarding the scope, prevalence of and relationships among co-morbidities associated with ASD and have shed light on the neurobehavioral symptoms of ASD, and the use of various therapeutic approaches in this population.

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 [email protected]. 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.