AIR-P: Spring 2020
April 21, 2020
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:
- 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.
- 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.
RESEARCH ACTIVITIES
As we enter the last few months of the current funding cycle, AIR-P is winding down several of its research activities. In addition, some of our activities have been paused due to restrictions on research activities that have been put in place in response to the Covid-19 outbreak. We look forward to completing these studies as soon as these limitations are lifted.
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 builds upon a pilot study that was conducted at the University of Missouri's Thompson Center for Autism in 2015. Several AIR-P sites are continuing with the ECHO outreach model throughout 2020. This year, Micah Mazurek and colleagues have published two papers on ECHO Autism, "Effectiveness of Extension for Community Health Outcomes Model as Applied to Primary Care for Autism A Partial Stepped-Wedge Randomized Clinical Trial," in the journal JAMA Pediatrics, and "Primary Care Providers' Perceived Barriers and Needs for Support in Caring for Children with Autism," in the journal Pediatrics.
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 has completed enrollment (N= 119) and a manuscript has been published in the Journal of Autism and Developmental Disorders: "Access to Dental Visits and Correlates of Preventive Dental Care in Children with Autism Spectrum Disorder," (Fenning et al, 2020).
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. It will wrap up enrollment in the next couple of months.
The one-year pilot study, "Ameliorate Childhood Obesity Risk from Newer Antipsychotics for individuals with Autism Spectrum Disorder (ACORN)" is adapting and testing an empirically-validated pediatric weight management program (Healthy Habits for Life; HH4L) for youth with ASD who gain weight on second-generation antipsychotics. This study 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.
AUTISM LEARNING NETWORK
The AIR-P continues its transition 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. Most recently the network registry has gone live, with over 700 patients and families enrolled. We have also completed adjustments to registry data collection forms and the data collection app, the Autism PRISM.
AIR-P DISSEMINATION EFFORTS
The AIR-P continues to provide opportunities for researchers from across the network to collaborate with each other as well as other Autism CARES Act 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. We had 12 posters accepted for presentation at INSAR 2020, but sadly the meeting has been cancelled. We also have a presentation coming up at the 9th International Conference on Patient- and Family-Centered Care: Partnerships for Quality, Safety, and Equity in August 2020. The AIR-P has its third supplement to the journal Pediatrics published in April 2020: "Improving Health and Health Care for Children and Youth with Autism Spectrum Disorder." Publication of the supplement through this journal provides dissemination to over 70,000 pediatricians in the US and more internationally, reaching a broad audience of primary care providers serving children and adolescents on the autism spectrum.
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, Autism CARES-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 Lucy Fell, Research Coordinator, at [email protected]. Archived webinars can be viewed by visiting the network's YouTube page: http://www.youtube.com/asatnairpnetwork.
COVID-19 INFORMATION AND RESOURCES FOR THE AUTISM COMMUNITY
Many of our AIR-P network members have collaborated and shared information and resources to support providers and families of individuals with autism during the current COVID-19 pandemic. We have collected these resources and have made them publicly available online. To access these resources, please use the following link, and feel free to share among others in your community: https://app.box.com/s/320kflkqp2ae5cuiicqq4k10wl7k7n3v.
For more information on the AIR-P, please visit our public website: http://www.airpnetwork.org.