1. Developmental Surveillance and Screening Monitoring 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. TeKolste Utah 5-04 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

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

4. TeKolste Utah 5-04 4 Developmental Monitoring Includes: Assessing for risk factors for adverse developmental outcomes –Biologic –Environmental

5. 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

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7. 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

8. 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

9. 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)

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

11. 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

12. 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

13. 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

14. 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

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

16. 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

17. TeKolste Utah 5-04 17 Surveillance & Screening 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

18. 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

19. TeKolste Utah 5-04 19 AAP Physician Survey Screening 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

20. 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)

21. TeKolste Utah 5-04 21 Detection Rates Without ToolsWith Tools Developmental Disabilities 30% identified Palfrey et al. J Peds. 111:651-655, 1987. 70-80% identified Squires et al. JDBP. 17:420-427, 1996. Mental Health Problems 20% identified Lavigne et al. Pediatr. 91:649-655, 1993. 80-90% identified Sturner. JDBP. 12:51-64, 1991.

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

23. TeKolste Utah 5-04 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

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

25. TeKolste Utah 5-04 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

26. TeKolste Utah 5-04 26 Parents Primary Care Providers Health Promoters Surveillance – ‘Individualized’ (Child Find) 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 Who?

27. 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%

28. 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 (+)

29. 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!

30. TeKolste Utah 5-04 30 Parents Primary Care Providers Health Promoters 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) Who?

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33. Review of Screening Tools Parent-Completed

34. TeKolste Utah 5-04 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.

35. 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 Glascoe FP

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

37. 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

38. TeKolste Utah 5-04 38 Screening Instruments Test:Competencies measured: Ages and Stages Questionnaires (ASQ) Communication, fine motor, gross motor, Personal-social, problem-solving Child Development Inventories (CDI) Language, motor, cognitive, social, behavior Parent Evaluation of Developmental Status (PEDS) Parents’ concerns about learning, development, and behavior

39. TeKolste Utah 5-04 39 Screening Tests Who completes Age of child Time to complete ASQParent4-60 m10-20 m CDIsParent0-72 m10 m PEDSParent0-8 y2 m +

40. TeKolste Utah 5-04 40 Parent’s Evaluation of Developmental Status (PEDS) Birth to 8 years of age Written at 5 th 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

41. 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?

42. 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

43. 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

44. 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

45. 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

46. 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 9 th Grade level

47. 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

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

49. Practice-Based Screening Model

50. TeKolste Utah 5-04 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

51. TeKolste Utah 5-04 51 North Carolina Practice-Based Model Integration of ASQ into selected well-child visits (6, 12, 24, 36, and 48 months of age) Care management, referral and information to parents about their child’s growth and development

52. TeKolste Utah 5-04 52 Guilford Child Health Added early intervention specialist into the practice –Oversees collection of ASQ information’ –Makes referrals to EI providers –Conducts home visits –Assists with parent education –Provides resources and referrals to families with specific needs or concerns

53. TeKolste Utah 5-04 53 Parent completes ASQ while waiting PCP scores ASQ - Discusses issues and results with parents In Examination Room: EI specialist reviews all completed ASQs Possible delay – One or more score Below cutoff No delay but Parental concern No concern Referral to EI consortium Or specific service Child followed by provider Or EI specialist No action required. Recheck at next Well child visit EI specialist determines intervention

54. TeKolste Utah 5-04 54 North Carolina ABCD Results: Increased Percent of Children Screened National Academy for State Health Policy. Dec 2003. ABCD: Lessons from a Four-State Consortium

55. TeKolste Utah 5-04 55 Results Using ASQ Practice-Based North Carolina The use of the ASQ did not disrupt workflow in the office Efficiency of well-child visit was increased since parental concerns were identified at the outset of the visit 7% of children screened were referred for additional services – compared to the statewide average of 2.9% (below target)

56. TeKolste Utah 5-04 56 North Carolina Parent Survey Indicate knowing about child development helps them in raising their children Want information from their provider on child development Read information they are given and find it helpful Need more information on nutrition and discipline

57. TeKolste Utah 5-04 57 Parent Survey Comments Snohomish County ASQ Pilot It was helpful just to reassure me that my child is developing normally...Interesting – I found she has skills I didn’t know she had. It is helpful to see benchmarks in children’s development. We know what to work on now! This is a great service to provide – thanks!

58. TeKolste Utah 5-04 58 Parent Report Measure No Problem Continue to monitor development Office Screen (optional) General or subdomain Basic Screen Office screen or referral for eligibility testing Eligibility Testing Diagnostic Testing No problem Suspect Problem Problem Refer to services No problem Nickel RE, Squires J, 2000.

59. TeKolste Utah 5-04 59 Planning Considerations Prescreen vs full screen –Parent concerns (e.g. PEDS), [red flag checklists] –ASQ, CDI, other Screening schedule –All visits (sick and well), WCC visits, Subset

60. TeKolste Utah 5-04 60 Subset Schedule Examples AAP – every well child visit N. Carolina – 4, 6, 12, 24, 36, 48 months Nickel & Squires – –High Risk – 4, 8, 12, 18, 24, 36, 48 months and whenever concern (parent/PCP) + lang screen between 18-36 mos –Low risk – 6, 12, 18, 24, 36, 48 months with same lang screen and concern recommendation

61. Just because we don’t know what is best doesn’t mean we shouldn’t do better. Tracy Garland Washington Dental Foundation

62. TeKolste Utah 5-04 62 Summary Listen to parent concerns Assess risk factors Monitor Give parents activities and resources IF UNSURE, REFER