Improving Care for Children with Autism Spectrum Disorders: Lessons from Collaboration

1. Improving Care for Children with Autism Spectrum Disorders:Lessons from Collaboration James M. Perrin, MD Professor of Pediatrics, Harvard Medical School Director, Division of General Pediatrics MassGeneral Hospital for Children Director, Clinical Coordinating Center, Autism Treatment Network

2. Disclosures Director of the Clinical Coordinating Center for the Autism Treatment Network Principal Investigator, Autism Intervention Research Network on Physical Health Major center support from Autism Speaks Maternal and Child Health Bureau, Health Resources and Services Administration

3. Major Growth in Rates of Chronic Health Conditions in Children and Adolescents

4. Children and Adolescents with Limitation of Activity

5. Autism Spectrum Disorders Complex neurobehavioral disorder(s) with many diverse manifestations Cognition Communication Repetitive behaviors Social interactions Part of larger category of neurodevelopmental disorders Current rates of ASD – 1:88 US children – 8-900,000 total Neurodevelopmental disorders – at least 3 million in US

6. Problems in Care Early identification in pediatric care and community Likely under-diagnosis of medical problems among children with autism Barriers to communicating symptoms Interpreting behaviors as inherent to ASD rather than arising from medical conditions Access to comprehensive, family-centered, ongoing care

7. Current Treatments for Children with ASD Intensive behavioral interventions Good evidence that early intervention improves outcomes Psychopharmacologic Only specific indication: risperidone, aripiprazole Treatment of co-existing conditions (ADHD, anxiety, other) Specialized therapies (e.g., speech, occupational) Numerous interventions with limited study Little information to help families make choices or decisions

8. Service Network for Children with ASD Fragmented Variable (and often limited) access of parents to comprehensive and coordinated services Diagnostic and evaluation services more available than ongoing treatment and follow up Limited experience of many clinicians with ASD Few clinical guidelines Limited training

9. Cystic Fibrosis Foundation Model Standards for participating sites Multidisciplinary staffing Services for adults with CF Peer review Common data collection and patient registry Quality assessment and improvement, with public (parent) disclosure Development of clinical practice guidelines (and supporting evidence) Active clinical research program Results: dramatic improvement in lifespan and in quality of life

10. Treating Acute Leukemia in 1960 Family support Psychopharmacologic Limited use of steroids Treatment of co-existing conditions (infection, bleeding) Numerous interventions with limited study Little information to help families make choices or decisions

11. Pediatric Oncology Collaboratives Changing scientific beliefs Common and carefully designed treatment protocols Rapid enrollment of subjects from many sites Tremendous improvement in survival and well-being Vermont-Oxford Network NICUs collaborating, comparing practices and outcomes

12. Autism Treatment Network Our Vision: To improve the lives of all children with ASD and their families by making a high quality, comprehensive, and multidisciplinary continuum of care accessible within local communities

13. ATN Mission The mission of the Autism Treatment Network (ATN) is to promote a sustainable national system of community accessible programs offering state-of-the-art comprehensive and coordinated medical care for all children and adolescents with autism spectrum disorders (ASD), and to develop evidence and support the improvement of medical care for these children and their families

14. Autism Treatment Network Goals Quality: Improve the quality of medical care for children and adolescents with ASD Access: Increase the availability of a comprehensive, coordinated, longitudinal care model for all children with ASD Research: Advance the evidence base and research on medical issues in order to provide better care for children with ASD Leadership: Become the leading clinical network on medical issues related to ASD

15. ATNAIRP (city_state) 17 sites.jpg

16. Key Network Elements Major infrastructure funding from consumer-driven philanthropy – Autism Speaks Parent involvement in all sites and national parent council

17. Common Care Standards Agreement on initial evaluation of children with ASD Common areas to assess Willingness to collaborate on common care standards

18. Guidelines Development Gastroenterology constipation Sleep insomnia Medication choice for ADHD symptoms

19. Toolkits Dental professionals toolkit Sleep toolkit (parents) Medication decision aid (parents) Blood draw toolkits (professionals and parents) All available via Autism Speaks/ATN website

20. Patient Registry >4,500 children and youth now enrolled Increasing follow up data available Can help to Clarify and quantify current practices Explore differences in practice and associations with outcomes Assess performance characteristics of ATN

21. GI, Sleep, and Behavior Children with sleep problems and/or GI symptoms substantially higher scores on internalizing and subscales of the Child Behavior Checklist significantly increased (daytime) irritability, lethargy, strereotypy (not GI), and hyperactivity on the Aberrant Behavior Checklist

22. Quality of Life Using the Pediatric Quality of Life Questionnaire (PedsQL™) Children with ASD had much lower scores than children in normative sample and children with other chronic conditions, especially in Social and emotional functioning

23. Autism Intervention Research Network on Physical Health Funding from the Health Resources and Services Administration, beginning 2008 Builds on base of the ATN Substantial investment in Clinical research to answer the questions that parents raise Efforts to standardize and improve practices Encouraging younger investigators and clinicians Disseminating findings to parent and clinical communities

25. AIR-P Studies 2008-2011 Diet and Nutrition • Systematic Studies of Under and Overnutrition among Children with ASD • Iron Deficiency and Sleep Disorders in ASD Sleep • Parent-Based Sleep Education Program for Children with Autism Spectrum Disorder • Relation of Sleep Disturbance in Autism Spectrum Disorder to Psychiatric and Behavioral Co-morbidities Metabolism and Biomarkers • Prevalence of Creatine Deficiency Syndromes in Children with ASD • Maternal Cholesterol and Autism Behavioral Outcomes • The Autism Impact Measure

26. AIR-P Renewal 2011-2014 Metformin Study Iron and Sleep Study Functional GI Study GI Stress ER Services

27. Improving Quality of Care Major initiative supported by the National Initiative for Children’s Healthcare Quality Developing skills in continuous quality improvement Adding measures of improvement in clinical status (e.g., sleep) Improving the system of care (wait times, access)

28. Measuring Outcomes in Neurodevelopmental Disorders Health Condition (disorder/disease) Body function & structure (Impairment) Activities (Limitation) Participation (Restriction) Environmental Factors Personal Factors

29. Domains of Assessment Clinical measures/indicators Seizure frequency Others Functioning (in developmentally appropriate ways) (WeeFIM, PEDI, FSIIR) Includes participation Quality of life (PedsQL, CHQ, Disabkids) Measuring views of consumers (or proxies) Generic or specific QoL Parent and child

30. Chronic Care ModelMedical Home

31. Medical Home Systematic Review 33 articles from 30 distinct studies 6 RCTs 1 pre-post with comparison; 4 without 3 cohort 16 cross-sectional Evidence for improved Health status Timeliness of care Family-centeredness Family functioning Homer et al., Pediatrics, October 2008

32. The Medical Home and Community Service System Children and families receive services from many community sources Education Recreation Transportation Others Medical home helps to coordinate key health-related services

33. Family-Centered Community-based System of Services for Children and Youth with Special Health Care Needs (CYSHCN) Perrin JM et al. Arch Pediatr Adolesc Med 2007;161:933-936.

34. Chronic Care Model/Medical Home Components Patient registries, with severity assessment Electronic health records Care coordination Patient information and involvement in decisions Practice standards and decision support Clinical teamwork

35. Organizing and Providing Best Care CF/leukemia models Most care in centers of excellence (little in community primary care) CF ~130 centers in North America About 25,000 children with CF About 900,000 children with ASD Need for a different model of care

36. Vision for the Future Every child with autism and other neurodevelopmental disorders can get comprehensive, coordinated, continuous care from a medical home in the community Backup and (as needed) direct access to comprehensive subspecialty services (e.g., ATN center) Consistent services across all sites New and effective diagnostic and treatment methods – clear evidence for diet, sleep, metabolic, and other components of care Answers to the questions that parents ask

37. What We Need Model(s) that enhance primary care skills and involvement Strong and available backup for (1o) physicians and parents Effective communication Payment to make the system work

38. The Affordable Care Act Helps Enhanced medical home Improved payment for chronic care management Support for team care in medical home Essential benefits Essential that they cover needed services!!

39. Summary Tremendous growth in rates of ASD and other neurodevelopmental disorders Early intervention appears effective Major impact on child lives and outcomes and parent quality of life Need to organize services effectively and improve access Importance of efforts in research, quality, and dissemination

40. We can work together to improve the future! Thank you