EARLY DETECTION OF DEVELOPMENTAL DELAYS- How Do You “Measure-Up”?

1. EARLY DETECTION OF DEVELOPMENTAL DELAYS-How Do You “Measure-Up”? Paul H. Dworkin, MD Pfizer Visiting Professor in Pediatrics Wright State University School of Medicine/ The Children’s Medical Center April, 2001

2. INTRODUCTION • Over 2 decades since identification of developmental, behavioral, psychosocial problems as “new morbidity” of pediatric practice • Profound societal change has influenced pediatric practice • “deinstitutionalization” • mainstreaming

3. INTRODUCTION • High prevalence of problems within pediatric practice setting • specific learning disability • attention-deficit/hyperactivity disorder • speech/language impairment • mental retardation • cerebral palsy • hearing impairment • serious emotional disturbance Dobos et al, J Dev Behav P ediatr 1994;15:348

4. GOALS • Define the role of the child health provider in the early detection of developmental problems • Identify guidelines for successful early detection • Describe specific strategies appropriate and feasible for use in the primary care setting • Emphasize the critical importance of parent-professional collaboration • Describe a community-based approach to enhancing developmental surveillance.

5. DEVELOPMENTAL PROBLEMSRationale for Early Detection • Critical influence of early childhood years on later school success • Less-differentiated brain of younger child amenable to intervention • Opportunity to avert secondary problems: self-esteem; self-confidence • Legal mandate

6. DEVELOPMENTAL PROBLEMSRationale for Early Detection • Documentation of benefits • for physical handicaps, mental retardation • improved family functioning • for environmental risk (e.g., Head Start) • decreased likelihood of grade repetition • less need for special education services • fewer dropping out of school • Clearer delineation of adverse influences • low-level lead exposure • adverse parent-infant interaction

7. DEVELOPMENTAL PROBLEMSChild Health Providers and Early Detection • Access to young children and families • Familiarity with social, familial factors • children at environmental risk • Professional guidelines • AAP Committee on Children with Disabilities • Bright Futures • Favorable attitudes of pediatric providers

8. DEVELOPMENTAL PROBLEMSPediatricians’ Attitudes “Earliest possible identification will increase chances for successful outcomes for children with…” Strongly agree/agree (%) Cerebral palsy 88 Mental retardation 88 Learning disabilities 98 Language impairment 100 Dobos et al, J Dev Behav Pediatr 1994; 15:348

9. DEVELOPMENTAL PROBLEMSOptions for Early Detection • How to best perform such early detection unknown • Variety of techniques currently in use • reviewing developmental milestones • informal collection of age-appropriate tasks • “clinical judgment” based on history, exam • formal screening with standardized test

10. OPTIONS FOR EARLY DETECTIONProfessionally-administered Screening Tests • Limitations of screening tests • too cumbersome and lengthy for routine use • reliability issues • validity issues • lack of well-established norms • Only 30% of pediatricians employ formal screening Dobos et al, J Dev Behav Pediatr 1994;15:348

11. OPTIONS FOR EARLY DETECTIONProfessionally-administered Screening Tests • Denver II • revision, restandardization of DDST • update in norms • increase in speech/language items • subjective behavior rating scale • removal of difficult items • new age scale • sensitive; limited specificity, predictive value • use as a “growth chart”; aid to monitoring

12. OPTIONS FOR EARLY DETECTIONProfessionally-administered Screening Tests • Tests with more favorable properties • Batelle Developmental Inventory Screening Test (Riverside Publishing, Chicago) • 0-96 months of age; 30 minutes to administer • favorable sensitivity, specificity • Bayley Infant Neurodevelopmental Screener (Psychological Corporation, San Antonio) • 3-24 months of age; 15 minutes to administer • high test-retest, inter-rater reliability

13. OPTIONS FOR EARLY DETECTIONProfessionally-administered Screening Tests • Tests with more favorable psychometric properties (continued) • Brigance Screens • 21-90 months of age; 15 minutes to administer • high sensitivity, specificity

14. OPTIONS FOR EARLY DETECTIONDevelopmental Surveillance • “…a flexible, continuous process in which knowledgeable professionals perform skilled observations of children during child health care.” • Components • eliciting/attending to parents’ concerns • obtaining a relevant developmental history • skillfully observing children’s development • sharing opinions with other professionals

15. DEVELOPMENTAL SURVEILLANCEElicit Parents’ Opinions and Concerns • Information available from parents • appraisals (opinions of children’s development) • concerns • estimations • predictions • descriptions • recall • report

16. DEVELOPMENTAL SURVEILLANCEParents’ Appraisals • Concerns • accurate indicators of true problems • speech and language • fine motor • general functioning (“he’s just slow”) • self-help skills, behavior less sensitive • “Please tell me any concerns about the way your child is behaving, learning, and developing” • “Any concerns about how she…”

17. DEVELOPMENTAL SURVEILLANCEParents’ Appraisals • Estimations • “Compared with other children, how old would you say your child now acts?” • correlate well with developmental quotients • cognitive, motor, self-help, academic skills • less accurate for language abilities • Predictions • likely to overestimate future function • if delayed, predict average functioning • if average, “presidential syndrome”

18. DEVELOPMENTAL SURVEILLANCEParents’ Descriptions • Recall of developmental milestones • notoriously unreliable • reflect prior conceptions of children’s development • accuracy improved by records, diaries • even if accurate, age of achievement of limited predictive value

19. DEVELOPMENTAL SURVEILLANCEParents’ Descriptions • Report • accurate contemporaneous descriptions of current skills and achievements • importance of format of questions • recognition:“Does your child use any of the following words…” • identification: “What words does your child say?” • produces higher estimates than assessment • child within a familiar environment • skills inconsistently demonstrated

20. DEVELOPMENTAL SURVEILLANCEParent-Completed Questionnaires • Advantages • ease of administration • do not require child’s cooperation • broad sampling of skills • flexible administration methods • mailed prior to visit • complete in waiting room • waiting room or telephone interview by staff • combination

21. DEVELOPMENTAL SURVEILLANCEParent-Completed Questionnaires • Ages and Stages Questionnaire (ASQ) (Paul H. Brookes, Baltimore) • 4-48 months of age; 15 minutes to complete • 11 age-specific questionnaires, 30 items each • acceptable sensitivity, specificity, reliability • Child Development Inventories (CDI) (Behavior Science Systems, Minneapolis) • 0-72 months of age; 20 minutes to complete • 3 inventories, each with 60-75 items • evidence of reliability and validity

22. DEVELOPMENTAL SURVEILLANCEParent-Completed Questionnaires • Parents’ Evaluation of Developmental Status (PEDS) (Frances P. Glascoe, Vanderbilt University) • 0-84 months of age • 10 questions; 5 minutes to complete • acceptable reliability, validity, sensitivity, and specificity

23. PARENTS’ EVALUATION OF DEVELOPMENTAL STATUS (PEDS) 1. Please list any concerns about your child’s learning, development, and behavior. 2. Do you have any concerns about how your child talks and makes speech sounds? 3. ….understands what you say? 4. ….uses his or her hands and fingers to do things? 5. ….uses his or her arms and legs? 6. …. behaves? 7. ….gets along with others? 8. …. is learning to do things for himself/herself? 9. ….is learning preschool or school skills? 10. Please list any other concerns

24. GUIDELINES FOR SUCCESSFUL DETECTION 1. Children’s developmental competencies are best determined over time • “spurts” and pauses, not linear fashion • variable rate across domains • longitudinal aspect of health supervision

25. GUIDELINES FOR SUCCESSFUL DETECTION 2. Children’s skills and abilities should be considered within the context of overall functioning and circumstance • nurturing environment may help overcome impact of subtle developmental delays • familiarity of pediatric provider with familial, social factors

26. GUIDELINES FOR SUCCESSFUL DETECTION 3. Developmental monitoring must identify children at environmental, as well as biologic risk • “double jeopardy” of poverty • higher exposure to risk factors, e.g., family stress • more serious consequences from such risks • success of interventions for such children • early childhood education, Head Start • home visiting

27. GUIDELINES FOR SUCCESSFUL DETECTION 4. Findings on developmental screening tests must be interpreted with caution • issues with reliability, validity, norms • limited evidence of validity within practice setting

28. GUIDELINES FOR SUCCESSFUL DETECTION 5. Professionals’ subjective impressions of children’s development may be inaccurate and should not be exclusively relied upon • subjective estimates of developmental status proven to often be inaccurate • mild retardation not identified until school age as evidence of delayed identification

29. GUIDELINES FOR SUCCESSFUL DETECTION 6. Parents’ opinions and concerns are important predictors of children’s developmental status • concerns are accurate indicators of delays • speech and language • fine motor • general functioning • contemporaneous descriptions also accurate

30. GUIDELINES FOR SUCCESSFUL DETECTION 7. Incorporating parental data improves the accuracy of clinical impressions of children’s development and can guide clinical practice • eliciting parents’ opinions and concerns an important component of monitoring • helpful in clinical decision-making • referral for further assessment • “watchful waiting”

31. GUIDELINES FOR SUCCESSFUL DETECTION 8. Certain parent-completed questionnaires compare favorably with professional assessment of children’s development • enlist parents as partners in monitoring • facilitate early detection in the busy practice

32. GUIDELINES FOR SUCCESSFUL DETECTION 9. An appropriate response to parents’ behavioral concerns is to seek additional information about children’s development • important indicators of children’s status • need for cautious interpretation

33. GUIDELINES FOR SUCCESSFUL IDENTIFICATION 10. Opinions of other professionals offer valuable information regarding children's developmental functioning • input from preschool teachers, child care providers, visiting nurses • preschool teachers’ predictions of school readiness, kindergarten success

34. DEVELOPMENTAL SURVEILLANCEConclusions • Expert opinion and research evidence support developmental surveillance as “optimal” clinical practice for monitoring children’s development • With proper technique, surveillance is family-focused, accurate, efficient, and can guide clinical decision making

35. DEVELOPMENTAL SURVEILLANCEConclusions (Continued) • Effectiveness is enhanced by incorporating valid measures of parents’ appraisals and descriptions • Successful implementation must be facilitated by changes in clinical practice, enhanced professional training, and further evidence of effectiveness within the practice setting • Caveat:Detection without referral/intervention is ineffective and may be judged unethical (Perrin E. Ethical questions about screening. J Dev Behav Pediatr 1998;19:350-352)

36. DEVELOPMENTAL SURVEILLANCEChildServ • Training of child health providers in effective developmental surveillance • Inventory of community-based programs supporting families and children’s development • Case coordination system to link prenatal, postpartum, and early childhood services and support • Data collection and analyses of developmental status Supported by Hartford Foundation for Public Giving

37. RESOURCE INVENTORY OF SERVICESChildServ • Primary and specialty medical care • Early childhood education (child care) • Developmental disabilities services • assessment • intervention • Mental health • Family and social support (home-, center-based) • Child advocacy/legal services

38. Triage and Referral System ChildServ 1-888-74CHILD

39. ChildServ- The ProcessScenario 1: Clear Concerns, No Obstacles Child Health Provider Language/Behavior/Parenting Concerns ChildServ Referrals: Language Eval; Play and Support Groups Two Week Follow-Up Contact: Enrolled Feedback to Child Health Provider

40. ChildServ- The ProcessScenario 2: Same Family, Limited Access ChildServ MIOP Referral for Outreach Referrals as Above: MIOP Delivers Information Two Week Follow-up by MIOP Feedback to Child Health Provider

41. ChildServ- The ProcessScenario 3: Unclear Problem Child Health Provider Minor Gross and Fine Motor Concerns ChildServ ChildServ Coordinator/Child Development Program Referral to Therapeutic Playgroup and PT/OT Two Week Follow-up: Enrolled in Programs Feedback to Child Health Provider

42. ChildServ- The ProcessScenario 4: Significant Delays Child Health Provider Motor Delays and Hearing Loss with a History of Prematurity and Low Birth Weight Birth to Three Referral

43. ANCILLARY ACTIVITIESChildServ • Project Team monthly meetings • Advisory Committee quarterly meetings • Health Care Provider Site Liaisons semi-annual meetings • Satisfaction surveys • parents • child health care providers • Quarterly newsletter

44. EXPERIENCE TO DATEChildServ • 155 children referred during first year of operation; 305 referrals over 24 months • 80% preschool age or younger • Majority of referrals (63%) for single need • parenting assistance/support • developmental assessment • speech/language assessment/services • 67% of referrals to services at no cost to either family or health plan

45. EXPERIENCE TO DATEChildServ • 41% of referred children receiving services at follow-up • 15% chose not to pursue recommended services • 30% not available for follow-up despite aggressive outreach • 84% of child health providers familiar with ChildServ • 70% made at least 1 referral • 67% satisfied, 29% somewhat satisfied with program activities

46. SUMMARY • Variety of strategies merit consideration by child health providers to detect developmental problems • elicit parents’ opinions and concerns • perform relevant history • skillfully observe parent-child interactions

47. SUMMARY (Continued) • Additional techniques worthy of consideration • structured parent questionnaires • formal professionally-administered test • Successful early detection requires useful techniques, appropriate training of child health providers, resolution of reimbursement issues

48. SUMMARY (Continued) • Children, families at risk for developmental problems require outreach and support • key role of public health programs • Anticipate need for parenting support in planning developmental services • Importance of critical evaluation of effectiveness of new models • developmental outcomes • cost effectiveness

49. REFERENCES • Dobos AE, Dworkin PH, Bernstein B: Pediatricians’ approaches to developmental problems: Has the gap been narrowed? J Dev Behav Pediatr 1994;15:34-38. • Dworkin PH, Glascoe FP: Early detection of developmental delays. Contemp Pediatr 1997;14:158-168. • Dworkin PH: Prevention Health Care and Anticipatory Guidance, in: Shonkoff JP, Meisels, SJ, eds. Handbook of Early Childhood Intervention. Second Edition. Cambridge, Cambridge University Press, 2000. • Frankenburg WK, Dodds J, Archer P, et al: A major revision and restandardization of the Denver Developmental Screening Test. Pediatrics 1992;89:91-97. • Glascoe FP, Dworkin PH: The role of parents in the detection of developmental and behavioral problems. Pediatrics 1995;95:829-836. • Squires J, Nickel RE, Eisert D: Early detection of developmental problems: strategies for monitoring young children in the practice setting. J Dev Behav Pediatr 1996; 17:420-427.