Autism Treatment Network and Autism Intervention Research Network on Physical Health: Annual Report 2017

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1 Autism Treatment Network and Autism Intervention Research Network on Physical Health: Annual Report 2017

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4 ATN/AIR-P Network 2017 Annual Report The Autism Treatment Network (ATN) funded by Autism Speaks, and the Autism Intervention Research Network on Physical Health (AIR-P), funded by Health Resources and Services Administration (HRSA) Collaborative Agreement UA3 MC to the Massachusetts General Hospital, form an integrated network. In 2017, the Network was comprised of 13 leading children s hospitals and academic institutions across North America. Working together, the ATN and AIR-P combine the highest standards and best practices in clinical care with the latest findings in research to advance medical care for children and adolescents with autism. Vision: Optimal health and quality of Life for individuals with autism spectrum disorders Mission: Create a sustainable system for care delivery, research, and evidence development This report highlights the work conducted in support of the Network s mission to create a sustainable system for care delivery, research and evidence development in ASD. The Network supports familycentered, multidisciplinary team-based care; develops best practices and standardized models of care; publishes expert practice guidelines to overcome barriers to care for children with autism; shares evidence-based best practices for autism screening, diagnostics and treatments; maintains an openaccess behavioral and medical research registry; advances scientific research through studies on major autism-related health concerns; creates and disseminates tool kits to better manage autism-related issues; and provides education and training focused on underserved populations to health professionals and families. By linking the research focus of the AIR-P with the clinical focus of the ATN, the Network has made fundamental improvements in the care of children with ASD and their families. Shared goals Clinical Care All network sites provide family-centered, interdisciplinary team-based care using the ATN care model. In 2017, the Network's 13 Centers of Excellence provided medical care to over 38,000 patients spanning 4

5 diverse communities. In 2017, the Network screened over 23,000 children for ASD. Over 6,000 of these children received a new ASD diagnoses. The Network also provided continuing care for over 17,000 individuals with ASD. Network Clinical Projects ATN Registry Along with providing care to children with ASD, our sites are diligently building a unique medical registry for ASD. Since its inception, our sites have enrolled over 7,000 subjects into the ATN Registry, including more than 80 new patients in The Registry has behavioral and medical data from a subgroup of children seen for care through the sites. A smaller subset of these children have longitudinal data as well as biomaterials in the Registry. The data from these subjects has yielded important insights on the scope and prevalence of co-morbidities associated with ASD, the relationships among co-morbidities and neurobehavioral symptoms of ASD, and the use of various therapeutic approaches in this population. The data has likewise been useful in the development of expert-consensus guidelines for the clinical management of ASD. Secondary data analysis from the ATN Registry has produced 37 published manuscripts, to date, of the 120+ published manuscript from Network research and activities. 6 of these manuscripts were published in These papers have been published in peer-reviewed, scientific journals including the Journal of Autism and Developmental Disorders, Pediatrics, and the Journal of Developmental and Behavioral Pediatrics. The registry has a very rich, well-characterized dataset available for secondary analysis. Researchers interesting in using ATN data can access the query tool or request data by visiting Development of a Care Model Manual To better meet the need for increased capacity of autism-specific medical care, the ATN has developed a technical manual for medical facilities interested in providing the ATN model of care. The manual offers autism providers with a basic structure for delivering the Network's model of autism care to better serve children and teens with ASD and their families. The manual also provides primary-care physicians with one-page summaries on how to support and serve children with ASD and related health conditions. To access the technical manual: Autism Learning Network Over recent years, the Network has measurably improved screening of and development-of-care plans for insomnia and constipation and for monitoring the side effects of atypical antipsychotic medications for children with autism. To build on our past success in quality improvement, the Network has partnered with the Anderson Center to develop an Autism Learning Network. Learning Networks are multicenter collaborations that engage patients, families, clinicians and researchers to improve care and outcomes, use data to conduct research and develop and disseminate innovative, evidence-based interventions to achieve improved health results. The Autism Learning Network will develop and test best practices and strategies for change. In so doing, we expect to improve care for all children and decrease disparities in care and outcomes. 5

6 The target population for the Autism Learning Network recently expanded to include children ages 3 to 12, who will be followed at participating Network sites. The initial aims are to increase the percentage of children who receive routine health services (e.g. dental care, primary care, vision and hearing screenings) as recommended by the American Academy of Pediatrics and to increase the percentage of parents who rate their child s physical health, general health and quality of life as very good or excellent using the NIH Patient-Reported Outcomes Measurement Information System (PROMIS) measures. The parent-reported data are collected with a mobile app that provides easy access to tool kits and careteam contact information. Sites started enrollment in the Learning Network near the end of Family Integration The Network created a Family Advisory Committee (FAC) in 2011, The FAC partners with clinicians in all Network activities to help improve quality and delivery of care; to develop family-centered, familyfriendly service standards for all families and their children with ASD; to build a system that supports family-centered care; and to ensure the relevance of ATN/AIR-P research agenda, and relay policies and strategic clinical priorities to families. The FAC is composed of two parent representatives from each site. The FAC was particularly active in Its parent members participated in strategic planning meetings for the ATN Registry Call-Back Research Study and helped author and review tool kits, blogs, manuscripts and research proposals. The FAC likewise has played an important role in the development of the Learning Network, Family Navigation Study, ATN Care Manual and new AIR-P projects. The FAC parent leaders and their local advisory groups are providing guidance in the development and implementation of family-centered and patient-centered work to improve health outcomes and quality of life for families and children with ASD. The Book of Hope (stories of hope from various FAC members) was printed and distributed to over 13,000 families across North America. The FAC has also been instrumental in providing feedback for different activities in Autism Speaks. In May 2017, the FDA conducted a public meeting on Patient-Focused Drug Development for Autism. The FDA was interested in obtaining patient perspectives on the impact of autism on daily life and patient views on treatment approaches. Autism Speaks solicited information from the FAC in advance to better inform their comments on the topics. The FAC was instrumental in providing feedback. Family Navigator The Network embraces the importance of providing ongoing care and support to families while their children are waiting for appointments or receiving post-diagnosis autism care. The role of the Family Navigator is to support families navigating the complex autism medical system, including community intervention and support resources. In 2017, over 35 personnel fulfilled this role across the Network. The Network is actively examining Family Navigation services to better understand components of successful services and develop best-practices model for family navigation. In 2017, family navigators in the Network supported nearly 14,000 families across the US and Canada. Training, Dissemination and Outreach Broadening the ATN s reach is an important goal for its participating sites. Through its sites, the Network provides autism outreach within and beyond surrounding communities. This includes providing a wide range of awareness, education and training opportunities to families and professional care providers. In 6

7 2017, the Network hosted more than 700 training, dissemination and outreach events around the U.S. and Canada, reaching over 31,000 professionals, students in training and families. Clinical Mentors The Network prides itself on providing clinical mentors in the field of autism. It s important to share the breadth of knowledge with upcoming medical providers. In 2017, the Network trained nearly 900 medical providers from various medical fields. Of these, 658 were students and predocs, 464 residents, 76 fellows, and 37 postdocs. Tool Kits The Network develops educational tools designed to support families and providers caring for children affected by autism. Each tool kit provides information on a focused topic with a specific goal such as supporting a family in making a health-related decision for their child with ASD. In 2017, our network continued its outreach to the autism community around the country and Canada. The network collaborated with AIR-P to create the Autism Speaks ATN/AIR-P tool kit Melatonin and Sleep Problems in ASD: A Guide for Parents. This brought the number of Network tool kits to 23. To reach as many of families and individuals as possible, many of our tool kits have been translated into Spanish, French, Somali, Vietnamese and Arabic. (See table below.) To date, over 350,000 tool kits have been downloaded (free of charge) from the Autism Speaks website by families, teachers, clinicians, and community providers. This is an increase of nearly 50,000 downloads from the previous annual report. In addition, the Network has distributed more than 15,000 flash drives containing all of the tool kits. This distribution is being amplified daily by families and professionals sharing copies with friends, family members, and patients. All 13 sites rely on the tool kits as part of the standard of care they provide to families and individuals with autism. The ATN/AIR-P tool kits are also distributed on the AIR-P website. A subset of the Tool Kits are also available on the Autism Prism app. The table below lists the tool kits developed to date. ATN/AIR-P Tool Kits 1. ABA Guide for Parents a c d e 2. Behavioral Health Treatments b c 3. Blood Draws for Parents 4. Blood Draws for Providers a 5. Constipation Guide for Parents 6. Delivering Feedback - A Professionals' Guide and Videos 7. Dental Provider's Guide 8. EEG Guide for Parents 9. EEG Guide for Providers 10. Feeding Behavior a 11. Medication Decision Aid d e 12. Melatonin and Sleep Problems 13. Pica Guide for Parents a 14. Pica Guide for Providers a 15. Puberty & Adolescence 16. Safe Medication Use 17. Sleep Quick Tips for Parents a d 18. Sleep Strategies for Children with ASD a b d 19. Sleep Strategies for Teens with ASD a b d 20. Toileting Guide for Parents a b c 21. Video: Vision Exam for Individuals 22. Visual Supports d 23. Melatonin and Sleep Problems: A Guide for Parents a Available in Spanish b Available in French c Available in Somali d Available in Vietnamese, e Available in Arabic To download these tool kits, go to: or 7

8 Addressing Healthcare Disparities The Network is committed to improving identification of autism and increasing services to underserved populations throughout the U.S. and Canada. Previously, the Network took a two-pronged approach to respond to related needs. As part of their Network deliverables, all sites designed activities to address local healthcare disparities. Many of these programs continue as on-going training and outreach programs and have led to Network-wide strategies such as ECHO Autism. (See next section.) The Network also created a workgroup to describe and analyze network-wide healthcare disparities in order to better determine potential strategies for closing the gaps in healthcare. Through HRSA funding, the Network is required to focus more than 50 percent of its efforts on underserved populations. In addition to the previously mentioned work, in 2017, our sites targeted their underserved populations with training and outreach activities that reached over 3,800 parents, caregivers and self-advocates professionals, trainees, students and fellows. Current Network Signature Research Projects Research Activities The Network is a rich resource for supporting research that advances medical care for individuals with ASD. In 2017 the Network supported 6 active/completed studies, including the Registry Call Back Assessment (RCBA), Family Navigation study (phase 1 and 2), ECHO Autism, dental health, and a physical exercise intervention, bringing the total to 40 research studies since Study descriptions: ECHO Autism Extension for Community Healthcare Outcomes (ECHO) was originally designed to build local healthcare capacity and improve access to best-practice hepatitis care for underserved minority and rural populations in New Mexico. ECHO represents an innovative telemedicine-based platform that connects local primary care physicians with specialists at academic medical sites during weekly ECHO clinics. During ECHO clinics, specialists provide education in best-practice treatment protocols, case-based learning and co-management. In March 2015, the team at the ATN/AIR-P site at the University of Missouri (UM) piloted the first ECHO Autism clinic. The Network is currently building on the UM s pilot to examine the effectiveness of ECHO Autism in increasing: Rates of ASD screening during 18-month well-child visits in underserved communities; The proportion of underserved children with ASD who receive screening, appropriate care for sleep problems and constipation; and The monitoring of underserved children 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 primary care providers in underserved communities. Ten sites are involved in ECHO Autism and the research phase of this study is rolling out in a step wedge study design with two sites starting ECHO 8

9 Autism activities every three months. The research phase of this study began on September 1, 2017 and will continue until August 31, Since September 1, 2017, all ten sites have implemented ECHO Autism at their institutions. Six sites have completed their study phases, two sites will finish in February 2017, and the last two will finish in the summer of To date, over 130 primary care physicians have been involved in ECHO Autism across the ten study sites. Improving Participation in Dental Care and Oral Health Outcomes for Underserved Children with Autism This study is a randomized, controlled trial to compare the efficacy of the established ATN/AIR-P Dental Tool Kit alone with that of a regimen combining the Dental Tool Kit with a parent-mediated behavioral intervention. Study objectives include improving home dental hygiene, oral health and compliance with dental procedures in underserved autism populations. This AIR-P signature study is funded through August The Dental Tool Kit is currently being used by general dentists to assist in broadening their reach to ASD individuals and their families with a goal of providing services in a more-suitable atmosphere. The study has enrolled 54 subjects. Physical Exercise to Reduce Anxiety in Underserved Children with ASD This research effort examined the feasibility and efficacy of a physical exercise intervention to reduce anxiety in children from underserved families. The results will provide critical insight into the feasibility and efficacy of a physical exercise intervention to reduce anxiety in children from underserved families. 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. Study of Probiotics for Quality of Life through GI and Emotional Stability in Youth with ASD and Anxiety: Single-Site Pilot Trial This pilot research effort explored the microbiome-mental/physical function connection for ASD, GI dysfunction, and anxiety. If altering the gut microbiome results in better GI and emotional function, it could improve quality of life for children with ASD and their parents. Longitudinal Study of ATN registry participants Through Autism Speaks funding, the ATN shifted its focus in 2015 from registry enrollment to the Registry Call Back Assessment (RCBA) study. The study recruited nearly 600 registry participants who completed a battery of assessments over a 2-year period. The study objective is to improve understanding of long-term outcomes associated with ASD and the relationship of medical comorbidities to these outcomes. The study will track the trajectory of major medical co-morbidities (sleep, GI distress, anxiety, hyperactivity and anthropometrics) and describe the longitudinal relationship between medical co-morbidities and behavioral/functional outcomes. This study was funded through August

10 Family Navigation Study Autism Speaks funding of the ATN supported the development of the Family Navigation study to evaluate the current state of family navigation services within the Network and their effect on families. In 2015, a survey and focus-group discussion took place with Family Navigators, site leaders and caregivers. A manuscript is currently being reviewed by the Network s Scientific Review Committee and will be submitted to be published in the spring of These findings informed a prospective study that is currently evaluating the impact of family navigation services on caregiver activation/engagement and stress. This prospective study will serve as a pilot for grant development to examine the broader impact of these services. The study ended in November, A manuscript will be submitted in The Network found that their family engagement increased from participating in the navigation study. One site reported that the study made an impact at their center. They revisited their follow up process for newly diagnosed families and increased the wait time before calling the families from 1 week to 4-6 weeks. The study required the center to contact families 4-6 weeks after diagnosis. The site found that this increased family responsiveness and engagement significantly. This is now the standard of care at that site. Abstracts In 2017, Network members presented a broad range of abstracts, over 15, in addition to other presentations at scientific meetings based on findings from Network research projects as well as the ATN Registry. These meetings included the annual conference of Pediatric Academic Society (PAS) (5 abstracts), the International Meeting for Autism Research (IMFAR) (8 abstracts), International Society of Behavioral Nutrition and Physical Activity (ISBNPA) (1 abstract), APTA (1 abstract), and National Academy of Neuroscience Meeting. To date, the cumulative total of Network abstracts presented at scientific meetings is over 180. Publications Publications are another metric of the Network s success. In 2017, Network investigators published 15 manuscripts in scientific journals. To date, the Network has published over 120 manuscripts on Healthcare related topics in ASD including: autism-related GI issues, nutrition, creatine deficiency, obesity, emergency care, sleep, and ASD health services. Full lists of all Network abstracts and publications can be found on Leveraged funding The Network successfully leveraged Autism Speaks investment to advance its mission. Since 2008, Autism Speaks has provided over $20 million in support. The Network has used this funding to draw additional investments to support initiatives that improve care for people with ASD not only in network centers, but also in surrounding communities and remote locations. For example, from 2008 to 2020, the ATN leveraged an additional $42 million from HRSA to serve as the AIR-P. This has provided supplemental funding to each center for specialized research projects, guideline development and the creation of evidence-based practices as well as quality improvement projects. 10

11 The Network s success in leveraging funds and resources expanded when each center began launching efforts to secure additional funding from their institutions for support of clinical activities and/or from external funders for additional research related to previous pilot work. Institutions in the ATN/AIR-P network have leveraged over a reported $60 million since 2014 in additional resources for research project activities that use registry data, build cross-collaborations with other centers and complement this work to further advance autism research and clinical care. Advances in Autism Research and Care Webinars As part of its dissemination and mentoring activities, the Network holds a webinar series titled Advances in Autism Research & Care (AARC), which alternates between autism research and care themes. The webinar series is available to all Network members, the staff of Combating Autism Act Initiative (CAAI)-sponsored programs, the LEND (Leadership Education in Neurodevelopmental and related Disabilities) and DBP (Developmental-Behavioral Pediatrics) fellowship networks and other autism and pediatric organizations, collaborators, primary care providers and autism advocates. The research-focused webinars feature Network investigators, many of them junior investigators, presenting work in various stages of development. The care-focused webinars cover trending topics in autism and promote idea generation for future research. More specifically, in 2017 the AARC series included 6 webinars on Strategies for Reaching and Engaging Families from Underserved Populations Autism Speaks MSSNG Project Arena Model of Assessment Gender Differences the Female Phenotype Peer Relationships in School Participation generally ranges from 25 to 120 attendees. Topics for the 2018 series include sexuality in adolescents with ASD, barriers to college transition, self-advocacy, and imaging. Planning for the 2018 series is ongoing. To watch previously recorded AARC webinars visit the Network's YouTube page: Network Site Involvement with Autism Speaks All our Network sites continue to be very supportive of the Autism Speaks mission. Light It Up Blue The 13 sites actively participate during the Light It Up Blue campaign season. Every year, Autism Speaks directs an invitation letter to each of the sites with campaign materials to kick off the season. The staff and FAC parents enthusiastically organize internal and community "Go Blue" events that included lighting up over 23 buildings. In addition, all our sites promoted Wear Blue to Work days at their medical centers and clinics in April. Several sites staffed resource information tables at their main children s hospitals. Several sites launched supportive social media campaigns on Facebook and Twitter, and turned their websites blue for the month of April. 11

12 Additionally, several sites worked closely with their affiliated universities, fraternities and sororities to encourage activities such as wrapping trees with blue ribbons and posting of information flyers on campuses and in the surrounding community. Many of our sites also partner with local communitybased organizations and businesses in raising awareness for April s Autism Awareness Month and providing autism friendly activities. Autism Speaks Blogs The Network is actively involved in authoring Autism Speaks blog posts. Most of the Got Questions?, and ATN@Work posts are authored by Network clinicians. Since 2015, the Network authored over 100 blog posts for the autism community. Autism Speaks Walks Network sites across the United States and Canada have long been active and engaged in Autism Speaks signature fundraising Walks. This includes staffing resource booths at their local Autism Speaks Walk or events, with information on research opportunities, tool kits, resources and referrals and information on clinical care. In 2017, 10 sites participated in Autism Speaks walks. CHLA, was a walk sponsor. Another site, Cincinnati Children s Hospital The Kelly O Leary Center (TKOC) ATN walk team was comprised of 70 members and raised over $6,000, making them the highest fundraising team for their walk. UCI had over 200 participants for the Orange County Walk. The Latino FAC made a dedicated effort to invite Latino families to join the Center s walk team by calling over 70 Latino families. UCI will continue to work with their Latino FAC to continue to involve the Latino community. These are just some examples of the Network s involvement in their local walks. Most of the Network sites also participated in walk kickoffs as guest speakers or hosted walk kickoff luncheons. Many Network FAC members and staff members are also members of the walk committees and work closely with AS field staff. Autism Speaks Mission Delivery In addition to the engagement activities described above, Network sites are enthusiastic partners with their local Autism Speaks chapters and the Autism Speaks national leadership with the shared mission of increasing understanding and acceptance of autism. For example, our sites have collaborated with Autism Speaks staff to develop new local chapters notably in Philadelphia, a key market area. Network staff have also assisted in planning Town Hall events on topics of interests in their communities and have applied Autism Speaks Family Services Community Grants to further promote education/training, recreation and community activities, young adult/adult services and technology in their communities and surrounding areas. Additionally, a Network pediatrician sits on the Autism Speaks local chapter Board of Directors. The sites have actively assisted the Autism Speaks Autism Response Team (ART) in identifying resources for families in need regardless of whether a family lives in their community. This collaboration has also included referrals to resources outside their sites. The Network works closely with the Autism Speaks Communications department to identify experts and/or families for local media coverage. 12

13 Thank You! ATN and AIR-P leadership team would like to thank the participating sites for their hard work and dedication. A special thanks to the Network Family Advisory Committee and to all the children and families within the ATN. You motivate us daily to do better and be better Network Sites: 1. Children s Hospital of Los Angeles 2. Children s Hospital of Philadelphia 3. Cincinnati Children s Hospital 4. Lurie Family Autism Center/ Mass General Hospital 5. Nationwide Children s Hospital/The Ohio State University 6. University of Arkansas for Medical Sciences 8. University of Alberta/Glenrose Rehab Hospital 9. University of California Irvine 10. University of Missouri Columbia 11. University of Pittsburgh 12. University of Rochester 13. Vanderbilt University Medical Center 7. Toronto Autism Network (Holland Bloorview Rehab, Surrey Place Centre, and the Hospital for Sick Children) 13