Developmental Surveillance and Screening Monitoring to Promote Optimal Development

1. Developmental Surveillance and ScreeningMonitoring to Promote Optimal Development Utah Consortium 5/11/04 Katherine TeKolste, MD Developmental Pediatrician Center on Human Development and Disability University of Washington Seattle, Washington

2. Overview • Purposes of Surveillance and Screening • Overview of Early Intervention - • Physician Developmental Surveillance Practices • Current – National – AAP, Illinois, Sices; Snohomish survey, UPIQ survey • Potential – N Carolina example • Developmental Surveillance and Screening Instruments TeKolste Utah 5-04

3. Developmental monitoring ismore than screening for developmental delay TeKolste Utah 5-04

4. Developmental MonitoringIncludes: • Assessing for risk factors for adverse developmental outcomes • Biologic • Environmental TeKolste Utah 5-04

5. Developmental Monitoring: • Address parental concerns • Reassure - normal variation in development, at-risk child developing normally • Provide developmental activities - minor/mild concerns but not clearly delayed/deviant development • Confirm and/or refer - delayed/deviant development • Identify delayed or deviant development early TeKolste Utah 5-04

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7. Screening • Detection is not perfect, even with good tools • Risk of over/under-referral • Not necessarily bad • Clinical judgment still plays a role • Squishy/Quirky kids, • Preemies, other medical factors • Environmental factors TeKolste Utah 5-04

8. Barriers Limiting the Use of Developmental Screens • Patient barriers • Physician barriers • Personal • Practice barriers • Community barriers • Screening tool barriers • Under- and over-identification • No ‘ideal’ screening tool TeKolste Utah 5-04

9. Problems from Underdetection: • Identification/prevention of co-morbidity not addressed – Child, as well as other family members • Lack of access to interventions to increase function, independence, & community integration, among other outcomes • Lack of access to other services and programs - financial, family support, information, behavior manangement (e.g. SSI, DD services) TeKolste Utah 5-04

10. Over-Identification ? • Borderline kids need help too • Developmental activities • Preschool, Head Start, Early Head Start • Other TeKolste Utah 5-04

11. Early Intervention Works • Windows for learning begin at birth • Greater developmental gains and less chance of secondary problems when EI begins soon after diagnosis • Reduces need for special education and other services later in life – 20% do not need special education services at 3 years of age • Cost effective • Reduces additional stressors on families TeKolste Utah 5-04

12. WHAT TO DO: • Listen to concerns (Parents, Community) • Avoid the ‘Don’t worry, he’ll grow out of it.’ trap • Assess risk factors • Monitor • Give parents activities, ways to monitor and resources • IF UNSURE, REFER TeKolste Utah 5-04

13. Parental Expectations • Parents want and expect support on child development • Commonwealth Fund • Healthy Steps • N. Carolina Access Project • Screening can encourage parental involvement and investment in health care TeKolste Utah 5-04

14. WHAT TO DO: • Listen to parent concerns • Avoid the ‘Don’t worry, he’ll grow out of it.’ trap • Assess risk factors • Monitor Surveillance and Screening • Give parents activities, ways to monitor and resources • IF UNSURE, REFER TeKolste Utah 5-04

15. Biologic Low birth weight, prematurity, SGA Micro/macrocephaly CNS infection Teratogen exposure Environmental Extreme poverty Lack of permanent housing Parental substance abuse Teen parent Risk Factors TeKolste Utah 5-04

16. WHAT TO DO: • Listen to parent concerns • Avoid the ‘Don’t worry, he’ll grow out of it.’ trap • Assess risk factors • Monitor Surveillance and Screening • Give parents activities, ways to monitor and resources • IF UNSURE, REFER TeKolste Utah 5-04

17. Informal, yet structured, monitoring of developmental achievements Interpret in light of environmental, social and medical factors Multiple sources of information, may include screening Periodic, not one point in time Brief assessment utilizing standardized instrument to screen development General Screen Multi-domain Focused Screen Single domain Surveillance & Screening TeKolste Utah 5-04

18. Primary Care Clinicians Few regularly include formal developmental monitoring • Time constraints • Issues of staffing and reimbursement • Uncertainty about how to handle concerns • Tend to rely on clinical impression TeKolste Utah 5-04

19. AAP Physician SurveyScreening Tool Use • 70% of pediatricians never use a screening tool • 15% use one only sometimes • Findings from Periodic Survey of Fellows #53: Pediatricians’ experiences with identification of children (less than) 36 months at risk for developmental problems and referral to early identification programs TeKolste Utah 5-04

20. Accuracy of Clinical Impression • Only about one-half of children with developmental problems identified before school entrance • Only 28.7% of children in elementary school special ed programs were identified before 5 years of age • Lack of screening? • Problems in clinical identification? • Aging into developmental deficit areas? (e.g. LD) TeKolste Utah 5-04

21. Detection Rates TeKolste Utah 5-04

22. Practices for Identification of Developmental Delay TeKolste Utah 5-04 AAP Periodic Survey #53; Sices L, et al.; STEPP Program

23. Snohomish County Physician Survey 2003 • Surveillance – Yes – 97% • General inquiry only – 19% • Checklist – 70% • 141/310 surveys (45.4% return rate) • 59% FP, 26% Ped, 11% NP, 4% PA TeKolste Utah 5-04

24. TeKolste Utah 5-04 Commonwealth Fund; Schor E. Autism Summit, 2003

25. Improving Surveillance and Screening Methods • Surveillance Checklists (?) • Red Flags Lists (Washington State Well Child Charting Form, Kids Get Care) • Screening Tools • Practice-Based Systems • North Carolina – Guilford Health • Community-Based Links • PHN, Head Start/ECEAP • Snohomish Health Department – CHILD Profile Pilot TeKolste Utah 5-04

26. Surveillance – ‘Individualized’ (Child Find) Who? • Developmental checklists • General Milestones • Healthy Steps Quick Check Forms • Bright Futures Professional Encounter Form • ‘Red Flags’ checklists • ICHAP • KGC & WA State Well Child Exam Form • Assessment of parental concerns • Informally or with standardized tool, e.g. PEDS Parents Primary Care Providers Health Promoters TeKolste Utah 5-04

27. Snohomish Physician Survey – 2003 • Standard Tool Use – 51% (71/141) • Denver II &/or PDQ – 66% of Standard tool users (approx. 2/3 Denver II + 1/3 PDQ) • ASQ – 14% • PEDS – 3% • ‘Charting form’ – age specific well child form; GHC form; State WCC form – 17% TeKolste Utah 5-04

28. UPIQ Learning Collaborative Identification - Possible DD • Standardized tool – 4/17 (23%) • DDST/Denver II at selected visits – 3 • Put together by P Freestone, every child, every visit – 1 • Checklist – 4/17 (23%) • ‘Brief DDST’ at selected visits + full Denver if concerns – 1 • Parental concerns and observation – 11/17 (65%) • Denver prn – 1 • Three pointed questions – 1 • No response - 4/17 • Other – Reach out and Read/interaction with books (+) TeKolste Utah 5-04

29. You Know Your Child! Do You Have Any Concerns About Your Child’s Learning, Development or Behavior? If so … Make sure your pediatrician uses an American Academy of Pediatrics-recommended screening tool to check your child for problems – PEDS, Ages & Stages, or the Child Development Inventories[1] Pediatricians who don’t use screening tools miss half of kids with behavioral & developmental problems! And most doctors just “eyeball” kids, rather than use a tool.[2] Don’t let your child be one of these statistics! Insist that your pediatrician screen your child with a good instrument! TeKolste Utah 5-04

30. Who? Formal Screening – Standardized Tool • Tool recommendations: • AAP Committee on Children with Disabilities Policy Statement • Autism Practice Parameter – AAP endorsed, American Academy of Neurology • ABCD Grant Developmental Screening Recs – WA state • (AHRQ report on Screening for Developmental Delay) Parents Primary Care Providers Health Promoters TeKolste Utah 5-04

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33. Review of Screening Tools Parent-Completed

34. Screening Tools • Parent Administered Tools • ASQ (North Carolina, WA, Idaho, ICHAP) • PEDS (Illinois) • CDI (Desch,100% Medicaid population in Residents’ continuity clinics in IL ) • All of these tests have good psychometric properties, including sensitivity (i.e., identifies kids with problems), specificity (i.e., doesn’t over-identify kids without problems), validity and reliability. TeKolste Utah 5-04

35. Accuracy of Parental Report • Poor on RECALL of milestones • Accurate on REPORT of current skills • Parental concerns accurate indicators: • Speech and language • Fine motor • General delay • Parental concerns less accurate: • Self-help skills, behavior TeKolste Utah 5-04 Glascoe FP

36. Optimizing Parental Screening Literacy issues ‘Would you like to complete this on your own or have someone go through it with you?’ TeKolste Utah 5-04

37. Screening Administration • Distributed at WCC visits to bring at next visit • Mailed prior to WCC visit • Completed in waiting or exam room • Completed by interview - phone prior to visit or in office • Electronic options • Download form, complete on line • Scoring coming, ?interactive coming TeKolste Utah 5-04

38. Screening Instruments TeKolste Utah 5-04

39. Screening Tests TeKolste Utah 5-04

40. Parent’s Evaluation of Developmental Status (PEDS) • Birth to 8 years of age • Written at 5th grade reading level • Available in English, Spanish, Vietnamese • Parent completed tool, can be completed by interview • Requires 2-3 minutes to complete, 2 minutes to score • Forms must be ordered from publisher TeKolste Utah 5-04

41. Parent’s Evaluation of Developmental Status (PEDS) • ‘Please list any concerns about your child’s learning, development, and behavior.’ • ‘Do you have any concerns about how your child: • Talks and makes speech sounds? • Understands what you say? • Uses hands and fingers to do things? • Uses arms and legs • Behaves? • Gets along with others? • Is learning to do things for him/herself? • Is learning preschool or school skills? • Other? TeKolste Utah 5-04

42. PEDS - Continued • Sorts children into high, moderate or low risk for developmental problem • Identifies when to screen, refer, counsel or monitor TeKolste Utah 5-04

43. Ages and Stages Questionnaire • AAN and AAP recommended • Good specificity and sensitivity • Parent completed – 10 minutes • 1 -3 minutes to score • Photo-copyable questionnaires for use at 19 ages (4, 6, 8, 10, 12, 14, 16, 18, 20, 22, 24, 27, 30, 33, 36, 42, 48, 54, & 60 mos) • Valid 1 month before and after target age • Activity suggestions included TeKolste Utah 5-04

44. Ages and Stages Questionnaire • 6 items in each of 5 domains • communication, gross motor, fine motor, problem-solving and personal-social • helpful illustrations • 5 open-ended questions TeKolste Utah 5-04

45. Ages and Stages Questionnaire • Parents' responses of yes, sometimes, and not yet • Scored as 10, 5 or 0 points for each question with cutoffs in each domain for each age level • Available in English, Spanish, French and Korean TeKolste Utah 5-04

46. Child Development Inventories • 3 screens for children birth to 6 years of age • Infant Development Inventory – 0-18 mos • Strengths and weaknesses by domain • Early Childhood Development Inventory – 18-36 mos with cutoff score • Preschool Development Inventory – 36-72 mos with cutoff score • Each has 60 items – yes/no responses • 10 minutes for parent to complete; 2 min scoring • Written at 9th Grade level TeKolste Utah 5-04

47. Denver II • Revision, restandardization of DDST • Updated norms • Increased speech and language items • Subjective behavior rating scale • Removed items difficult to interpret • Sensitive; limited specificity, predictive value • Use as ‘growth chart’; aid to monitoring TeKolste Utah 5-04

48. N. Carolina ABCD project TeKolste Utah 5-04

49. Practice-Based ScreeningModel

50. North Carolina Practice-Based Developmental Screening Model • 1999 study indicated between 8-13% of the total 0-3yo population in North Carolina could qualify for and benefit from EI. • (State includes at-risk population in EI programming.) • Only 2.6% were being served TeKolste Utah 5-04