Screening and Surveillance of Autism and Related Disabilities

1. Screening and Surveillance of Autism and Related Disabilities How to Change One’s Clinical Practice Statewide Autism System of Care Funded by Florida Developmental Disabilities Council Health-Care Task Force

2. One of the doctors we took Gary to told us, “Well if he’s autistic he could just snap out of it , like amnesia.” I thought to myself, “Don’t hold your breath.” Powers, M., 2000

3. Learning Objectives • Discuss why early screening and surveillance is important. • Define red flags of autism spectrum disorders. • Review developmental screening tools. • List barriers preventing change in practice. • Describe model for improving screening practices. • Create aim statement for changing practice. • Develop next steps to initiate practice change.

4. Part 1: Autism Spectrum Disorders:Importance of Early Screening

5. Autism Spectrum Disorders • Social-communicative disorder • Triad of impairments • Socialization • Verbal and nonverbal communication • Restricted and repetitive patterns of behaviors • Unknown etiology, but with strong genetic basis

6. What are the Red Flags? • Inappropriate gaze • Lack of sharing enjoyment or interest • Little or no response to name when called • Lack of coordinated facial expression, gesture, and sound • Lack of showing • Unusual intonation and/or pitch of voice • Repetitive movements of posturing of body, arms, hands, or fingers • Repetitive movements with objects Weatherby et al., 2004 Wetherby et al., 2004

7. Absolute Indications for Immediate Evaluation • No babbling pointing or other gesture by 12 months • No single words by 16 months • No 2-word spontaneous (not echolalic) phrases by 24 months • ANY loss of ANY language or social skills at ANY age

8. Are We Missing The Boat? • Average age for diagnosis in United States is 3 to 4 years (Filipek, 1999). • Average age for screening/referral ranges from 24 to 40 months. • However, recommended age for referral by 18 months. • Most physicians rely on their clinical judgment, yet clinical judgment detects fewer than 30% of children who have developmental disabilities (Glascoe, 2000; Palfrey, 1994). • Research shows that using modified developmental checklists are not adequate for detecting developmental delays (Committee on Children with Disabilities, 1994).

9. Early Screening:Why? Intensive early intervention before age 3 results in greater impact after age 5 (Wetherby et al., 2004). Presence of neurologic plasticity at younger ages Better school placement outcomes (general education vs. special education) (Harris & Handelman, 2000) Better chance of graduating from high school Greater developmental gains Higher likelihood to live independently Positive economic impact over a life-time with early intervention

10. General Developmental Screeners • Recommended General Screening Tools • Ages & Stages Questionnaires (ASQ) • Child Development Inventories (CDI) • Parents’ Evaluations of Developmental Status (PEDS) • Infant/Toddler Checklist for Communication and Language Development • Communication and Symbolic Behavior Developmental Profile (CSBSDP)

11. Autism Specific Screeners • The Checklist for Autism in Toddlers (CHAT) (Baron-Cohen, 1992) • Pervasive Developmental Disorder Screening Test (PDDST) (Siegel, 1998) • Modified Checklist for Autism in toddlers (M-CHAT) (Robins, Fein, & Barton, 1999)

12. Parent’s Evaluation of Developmental Status (PEDS): • Relies on information from parents • Can be used in patients birth to 8 years • Screens for both developmental and behavioral problems • Consists of 10 questions (4th-5th grade reading level) • Can be used during well-child visits, while parents are waiting for appointments- takes about 2 minutes . • Available in English, Spanish, and Vietnamese • Standardized scoring procedures • Total cost (including materials and administration) is $1.19 per patient

13. Ages and Stages Questionnaire (ASQ): • Relies on information from parents • Can be used in patients 4 months to 5 years • Screens for developmental problems; personal/social • Takes 10-15 minutes to complete • Separate 3-4 page form for each well-child visit (age-specific) • Available in English, Spanish, French, and Korean • Standardized scoring procedures • No cost associated with tool – can photocopy

14. Easy Road from Screening to Dx • AAP recommends using a general developmental screening tool at all well-child visits • If pass, re-screen at next well-child visit • If fail, perform appropriate tests (e.g., hearing, lead levels, etc.) • If test results are normal then refer patient to subspecialist and/or Early Steps

15. Perceived Barriers • What prevents healthcare providers from changing their practice? • Lack of information • Lack of time • Lack of sufficient money/resources • Lack of necessary staff • _________________ (fill in the blank)

16. Concrete Barriers • Patient waiting time before seeing physician • Total visit time • Utilization of screening tools/instruments • Concern with emotional impact on family • Tracking patients with behavioral and/or developmental problems • Knowledge of appropriate referral resources • Appropriate documentation, billing/coding

17. Part 2:Changing Clinical Practices

18. Content adapted from The Improvement Guide, A Practical Approach to Enhancing Organizational Performance, by Gerald J. Langley et. al, Jossey-Bass, 1996. Figure copied from Education in Quality Improvement for Pediatric Practice (www.eqipp.org) Taken from Education in Quality Improvement for Pediatric Practice (www.eqipp.org)

19. An Effective Aim Statement is: • Clear. The statement should be read and understood, without interpretation. What is trying to be accomplished? • Numerical. There are quantifiable measures in place to indicate progress. • Realistically Ambitious. The aim is set high enough that it will have a significant impact on the practice, but not so high that it is unrealistic. Taken from Education in Quality Improvement for Pediatric Practice (www.eqipp.org)

20. An Effective Aim statement is: • Focused. The aim is defined so that the work is not overwhelming or discouraging, but simplifies the demands on one’s attention. • Flexible. The aim should allow room for refinement where several different solutions to the performance gap (rather than just one) are explored. Taken from Education in Quality Improvement for Pediatric Practice (www.eqipp.org)

21. Aim Statement Example: • To use PEDS or ASQ with 25% of children up to 18 months of age within 3 months of initiation • 50% by 6 months • 75% by 9 months • 100% by 12 months

22. Group Activity- 5 Minutes • Develop an “Aim Statement” for using a general developmental screening tool in your practice.

23. PDSA Cycles Copied from Education in Quality Improvement for Pediatric Practice (www.eqipp.org)

24. Measurement and Data Collection • Key principles of measurement and data collection • Keep it simple - focus on a few measures • Don't measure everything, only things you need to know • Seek usefulness, not perfection • Integrate measurement into daily routine • Use existing data when possible • Plot data over time Taken from Education in Quality Improvement for Pediatric Practice (www.eqipp.org)

25. Ways to Approach Barriers • Step One: “Know Your Patient Flow” • Select sample of 20-30 patients and record time of visit from arrival to checkout. • Choose day/time when wait is likely to be longest. • If patient arrives early, start counting at scheduled appointment time. • Have each “station” record time when encounter starts. • Review results and determine if there are ways to cut down on visit time. Adapted from “Office Visit Cycle Time” (www.ihi.org)

26. Ways to Approach Barriers • Step Two: “Choose Screening Instrument” • Select desired screening instrument. • Choose small sample size of patients (5-10) to conduct instrument and record time taken to complete task. • Analyze results to determine best time to administer instrument.

27. Ways to Approach Barriers • Step Three: “Flagging Charts” • Consider: • Color-coding charts • Sticker system • Electronic medical reporting • Consider starting an ASD registry

28. Ways to Approach Barriers • Step Four: “Improved Documentation” • Perform chart review on 20-30 randomly selected patients with known developmental concerns. • Examine “problem lists” (i.e., Are the problem lists completed for those with suspected behavioral and/or developmental concerns?). • Determine whether appropriate screening has been performed (e.g., by target age). • Review percentages of those that have received proper referral. • Assess quality of “therapies” (parent survey).

29. Ways to Approach Barriers • Step Five: “Finding Support Staff” • Review roles/responsibilities of support staff. • Consider assigning data collection/surveillance (e.g., medical assistant, nurse). • Allow same person to track referrals and appropriate follow-up: • Think care coordination as in the “medical home” concept. • Involve key staff in important brain-storming/idea forming sessions.

30. Example of Change in Practice to Increase Early Screening • Front desk clerk hands out PEDS to parent at time of check-in. • Choose nurse/medical assistant who could best collect and score instrument. • Have parent hand over completed PEDS to above-MA upon being called back for vitals. • MA will score instrument while patient is having vitals checked and being placed in room. • Scored PEDS will be placed with chart on door to await physician’s arrival.

31. Example of Change in Practice to Increase Early Screening • If score is high/low, then MA will also place sticker on chart for future follow-up. • Physician can review PEDS with family and make appropriate recommendations. • Can be done in lieu of modified developmental screeners conducted by providers. • If 2 minutes are saved with each patient over an entire day, there may be enough time to schedule additional patients. This would likely cover the cost of the instrument and/or possibly increase income.

32. Activity- 10 Minutes • Develop action plan step(s) for changing YOUR practice to increase the use of general developmental screener(s):

33. Tips for Success • Improvement occurs in small steps. • Repeated attempts are often needed to refine your strategies or implement new ideas. • Assess regularly to improve or revise the plan. • Study failed changes for learning opportunities. • Plan communication to update participants. • Engage leadership support. • Celebrate success. Adapted from Education in Quality Improvement for Pediatric Practice (www.eqipp.org)

34. Resources • First Signs • www.firstsigns.org/ • Education in Quality Improvement for Pediatric Practice • www.eqipp.org • Institute for Healthcare Improvement • www.ihi.org • National Initiative for Children’s Healthcare Quality • www.nichq.org • Agency for Healthcare Research and Quality • www.ahrq.gov

35. Resources • American Academy of Pediatrics (2001). The pediatrician’s role in the diagnosis and management of autistic spectrum disorder in children. Pediatrics, 107, 1221-1226. • Committee on Children with Disabilities (1994). Screening infants and young children for developmental disabilities. Pediatrics, 93, 863-865. • Filipek, P.A. et al., (2000). Practice parameter: Screening and diagnosis of autism. Report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society. Neurology, 55, 468-479. • Filipek, P. A., et al., (1999). The screening and diagnosis of autistic spectrum disorders. Journal of Autism and Developmental Disorders, 29, 439-484. • Glascoe, F. (2000). Pediatrics in Review, 21, 272-280. • Harris, S., & Handleman, J. (2000). Age and IQ at intake as predictors of placement for young children with autism: A four-to six-year follow up. Journal of Autism and Developmental Disorders, 30, 137-142. • Palfrey, et al., (1994). J Peds, 111, 651-655. • Powers, M. D. (2000). Children with Autism: A parents’ guide (2nd ed.). Bethesda: Woodbine House.- • Wetherby, A. M., Woods, J., Allen, L., Cleary, J., Dickinson, H., & Lord, C. (2004). Early indicators of autism spectrum disorders in the second year of life. Journal of Autism and Developmental Disorders, 34, 473-493.

36. Learning Objectives Addressed: • Importance of early screening and surveillance. • Definition of Red Flags of autism spectrum disorders. • Developmental screening tools. • Barriers preventing change in practice. • A model for improving screening practices. • Creation of an aim statement for changing practice. • Development of next steps to initiate practice change.

37. Closing Thoughts • “If I could snap my fingers and be non-autistic, I would not. Autism is part of what I am.” -Temple Grandin • “Autism is not me. Autism is just an information-processing problem that controls who I appear to be. Autism tries to stop me from being free to be myself.” -Donna Williams

38. Discussion/Questions