STEPPs

2. STEPPs “A journey of a thousand miles must begin with a single step.” Lao-tzu (604-531 B.C.)

4. STEPPs • Developed by Illinois Chapter, American Academy of Pediatrics (ICAAP) • Investment of Illinois Council on Developmental Disabilities • Jointly sponsored by ICAAP and AAP • Approved by the Illinois Nurses Association

5. STEPPs • 2.75 CME credits - AAP • 3.6 contact hour credits - INA • Please sign in • Complete evaluation form in handout booklet

6. Part I: Overview • Part II: Recommended Tools • Part III: Referral Process • Part IV: Implementation Strategies in the Pediatric Office

7. STEPPs Learning Objectives • Identify the purpose of developmental screening and early intervention • Use tools to screen for developmental delays and autism • Implement referral procedures for children who fail or pass but exhibit potential development concerns • Employ parent/caregiver education materials • Implement efficient office procedures for screening and referrals

8. Needs Assessment • Screening and surveillance practices • Referral procedures • Topics to cover • Miscellaneous issues

9. AAP Policy AAP Committee on Children with Disabilities recommends routine standardized developmental and behavioral screening Pediatrics Vol. 108 No. 1 July 2001

10. Terminology Surveillance vs Screening

11. Missed Opportunities • Practices that do not regularly screen for developmental progress miss opportunities for early referral and treatment. • Typical Story

12. Why Screen and Refer? • Screening works! • Helps young brains develop and advances physical and emotional development • Improves patient/family satisfaction • Federal/legal requirements

13. 20% of mental health problems identified (Lavigne et al. Pediatr. 1993; 91:649-655) 30% of developmental disabilities identified (Palfrey et al. JPEDS. 1994; 111:651-655) 80-90% with mental health problems identified (Sturner, JDBP 1991; 12:51-64) 70-80% with developmental disabilities correctly identified (Squires et al., JDBP 1996; 17:420-427) Detection RatesWithout Tools With Tools

14. Screening “Caveats” • Detection is not perfect, even with good tools • Clinical judgment still plays a role • Risk of over-referrals

15. Early Brain Development

16. Cost Effective • The practice of developmental screening and referrals is not a gimmick. • The cost of treating developmental problems early is substantially lower than treating a patient who is diagnosed late.

17. Good Customer Service • Parents want and expect support on child development • Commonwealth Fund • Healthy Steps • Screening can encourage parent involvement and investment in child’s health care

18. Good Customer Service (cont’d) “I just knew that my child was not normal. And she (the physician) kept telling me ‘you need to relax, you’re tired…you’re stressed, you’re overreacting. Take his binky away, take the bottle away.’ I hear all of that and I just want to scream. None of this applies. He’s not normal.”

19. Good Customer Service (cont’d) “I loved her!” “He is superfantastic, I won’t see another doctor!” “He actually listened to me!” Parents who felt that physicians listened to and acted on their concerns were incredibly grateful.

20. Federal/Legal Requirements • Americans with Disabilities Act (ADA) 1990 • Individuals with Disabilities Education Act (IDEA) 1975 (Amended in 1997) • Healthy People 2000 & 2010 Goals

21. Current Practices in Developmental Screening • 15-20% of pediatricians use screening tests routinely • Developmental checklists • Guidelines for Health Supervision (AAP) • Bright Futures (MCHB/AAP) • trigger questions to promote discussion between families and providers

22. 10th 25th 50th 75th 100th percentile Detection of Disabilities by Physicians Speech Hyperactivity Emotional Problems Other Developmental Learning Disability 0 2 4 6 8 10 Age of First Diagnosis (years) Legend

23. Illinois Unmet Needs Project • 87% reported they provide developmental monitoring (92% of pediatricians) • 64% are not using commercially developed screening tools • 36% do…. • Denver and Denver II (most common) • Ages & Stages Questionnaire • Screen for social-emotional/behavior problems less often Final Report: May 2002 Developmental Screening by Primary Care Physicians

24. Illinois Unmet Needs Project • Barriers to screening: • Lack of time • Lack of staff • Inadequate reimbursement • Lack of training • Lack of parent acceptance of delay Final Report: May 2002 Developmental Screening by Primary Care Physicians

25. General Implementation Issues • Identification of children with delay • Pitfalls and challenges for/with: • Providers • Patients • Parents and caregivers Take Careful STEPPs!

26. Take Careful STEPPs:What to Expect • Developmental or Behavioral Disorders • Speech and language issues • Mental retardation • Learning problems • Attentional disorders • Other behavioral difficulties • only ½ of children with these problems identified prior to school entrance

27. Take Careful STEPPs:What to Expect http://www.pedstest.com/test/peds_intro.html

28. Take Careful STEPPs:Providers • Lack of education on tools and their use • Expectations about children’s development • The “wait and see” approach • Continued reliance on observations • Failure to trust screening tests or results • Reliance on poor quality or homemade tools

29. Take Careful STEPPs:Children • Development exists on a continuum • Children manifest skills variably, inconsistently • Latent period • Developmental problems increase with age • 2-3% of 0-18 month olds • 10% of 24-72 month olds • 16% of 0-21 year olds

30. Take Careful STEPPs:Children (cont’d) • Screen at all well child visits • Consider screening at some sick visits

31. Take Careful STEPPs:Parents/Caregivers • Parents are reservoirs of rich information • Screening structures observations, reports, and communication about child development • Screening becomes a teaching tool for parents and health care professionals • Screening improves relationships • Parent involvement reduces cost

32. Take Careful STEPPs:Parents/Caregivers • Parent recall is often inaccurate • Parent reports rely on current descriptions of child’s behavior and skills • Parents may face personal challenges • Reliable under certain conditions, with well-developed tests

33. Take Careful STEPPs:Preparing Parents/Caregivers • Explain tool and purpose to parents • Discourage assumption of a “problem” • addressing behavioral and developmental issues is an important part of your service • Assess ability to complete tool properly • with assistance? • in office or at home?

34. Take Careful STEPPs:Communicating Results • Focus on positives • Practice your language “Learning too slowly” “Delayed in some areas” “Needs some extra attention and support”

35. Take Careful STEPPs:Communicating Results • Stress the need for further evaluation and follow-up • Offer parents activities they can do right away • Help the parent to inform others

36. Take Careful STEPPs:Encouraging Next Steps • Acknowledge parent’s fear • Avoid judging or scolding parents • Encourage communication, particularly when recommendations are not followed • Provide parent with information on the referral • Set a follow-up appointment

37. Take Careful STEPPs:Encouraging Next Steps • The importance of information to parents: • Must explain situation to others • Language barriers • Logistics • “Demystify” the process

38. Part I Summary Developmental Screening is: • Recommended by AAP • Different than surveillance • Beneficial to children and practices • Underutilized in Illinois • Challenging but rewarding to implement

40. STEPPs • Features of developmental screening tests • Parents’ Evaluation of Developmental Status – PEDS parent report tool • Ages and Stages Questionnaire - ASQ • Checklist for Autism in Toddlers – CHAT • Autism spectrum disorders

41. Screening Test Features • Sensitivity • Specificity • Positive predictive value • Validity • Reliability

42. Screening Test Features • Scoring • Training • Administration

44. Used for children birth through 8 years old • Written at 5th-grade reading level • Available in English, Spanish, Vietnamese • Designed as parent report tool for waiting room • Requires minimal time for parent to complete • Can be performed as interview, requiring 2-3 minutes to complete and score

45. general concerns speech sounds comprehension use of hands and fingers use of arms and legs behavior interaction with others independence preschool/school skills other

46. Score & Interpretation Form • Longitudinal Score • Tally parent’s concerns • Predictive concerns vs. non-predictive concerns • Interpretation Form • Clinical judgments

47. Interpretation Form • when and where to refer • when to screen further • when to offer developmental promotion and recommendations • when to provide behavioral guidance • when to observe vigilantly • when reassurance and routine monitoring are sufficient

48. Interpretation of scores • Path A-referral • Path B-screen with secondary screen • Path C-counsel • Path D- foreign language barrier • Path E-elicit concerns at next visit

49. Challenges in Interpreting Parent Concerns consider language barriers watch for concerns that fall in multiple categories he won’t do it for himself investigate tentative language pursue previous concerns

50. Case Example