The AIR-P Steering Committee, which guides the activities of the Autism Intervention Research Network on Physical Health (AIR-P), an important role served by the Autism Treatment Network (ATN), held its second annual meeting in Washington, D.C. in June. The theme of this year's meeting was Quality Improvement, which has become a guiding principle in the AIR-P, and which featured prominently in discussions throughout the meeting. The AIR-P is focused on research and the development of evidence-based guidelines aimed at improving the physical health of children with ASD and other developmental disorders. The AIR-P's increasing emphasis on quality improvement is intended to drive positive patient health outcomes and enhance ATN sites' responsiveness to family needs through incremental, data-driven improvements in clinical care, administrative practices and increased parental involvement and participation.
The first day opened with a review of the AIR-P's progress to date in research and guideline development. “Our guidelines, which are under development, have focused on the most common parental and clinician concerns,” reported Dan Coury, M.D., ATN's Medical Director. He cited significant progress on guidelines in the following areas: insomnia, constipation, EEG, MRI, behavior, medication monitoring, medication choice, metabolic evaluation and genetic evaluation. Research is currently under way on six AIR-P research projects.
Most of the first day was devoted to workshops on quality improvement, under the guidance of Charles Homer, M.D., President and CEO of NICHQ and Jane Taylor, Ed.D., NICHQ Improvement Advisor. Facilitators discussed the application of quality improvement principles that have framed the current testing of draft guidelines and algorithms on constipation, insomnia and EEGs, showing how the application of the cyclic approach of Plan-Do-Study-Act (this PDSA cycle is also known as the “improvement model”) will allow adequate testing, data collection, adjusting and retesting of the guidelines to ensure they are viable before they are promoted to a wider clinical audience. Participants explored ideas to ensure greater parental involvement in site programmatic activities, studied basic quality improvement principles and learned to devise “aim statements” containing numeric goals and defined deadlines.
The second day focused on discussing the progress and future direction of research activities and guideline development. In particular, the committee discussed ways to improve implementation of these activities to ensure that results are feasible and that they can be translated into effective treatments that meet patient health needs and are responsive and feasible in the context of family needs. Currently ATN draft guidelines in the form of algorithms (process flow diagrams) are being tested and monitored, and evidence is being compiled. Over the next year this testing will be completed, the data will be analyzed and manuscripts will be written and submitted for guidelines on insomnia and constipation, while other guidelines gradually move through their own trial processes. As this is proceeding, the ATN is going to identify best practices through a combination of prospective, hypothesis-testing studies and retrospective studies, with the added aim of developing future guidelines as result of specific intervention research.
Clinic coordinators had a special session to examine how to improve clinic operation and processes including patient intake, referrals, data management and follow-up with families. The coordinator committee set goals for their improvement activity which includes expanding directories of local resources for families including service providers, community resources and organizations and developing tools for families whose children are transitioning into adulthood.
Dr. Coury summarized the gathering “This meeting provided a great opportunity to take stock of the progress we have made in our research initiatives and in developing evidence based guidelines,” he said. “It allowed us to take significant steps forward in continuously improving the care we provide at ATN sites.”
Participants included key individuals from the ATN sites, the committee's parent representative, staff from the ATN's Clinical Coordinating Center and Data Coordinating Center, Autism Speaks, the National Initiative on Children's Healthcare Quality (NICHQ), and the Health Resources and Services Administration (HRSA), which provides funding for the AIR-P.