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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. INTRODUCTION.

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Early detection of developmental delays how do you measure up

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


Introduction
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


Introduction1
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


Goals
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.


Developmental problems rationale for early detection
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


Developmental problems rationale for early detection1
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


Developmental problems child health providers and early detection
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


Developmental problems pediatricians attitudes
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


Developmental problems options for early detection
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


Options for early detection professionally administered screening tests
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


Options for early detection professionally administered screening tests1
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


Options for early detection professionally administered screening tests2
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


Options for early detection professionally administered screening tests3
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


Options for early detection developmental surveillance
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


Developmental surveillance elicit parents opinions and concerns
DEVELOPMENTAL SURVEILLANCEElicit Parents’ Opinions and Concerns

  • Information available from parents

    • appraisals (opinions of children’s development)

      • concerns

      • estimations

      • predictions

    • descriptions

      • recall

      • report


Developmental surveillance parents appraisals
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…”


Developmental surveillance parents appraisals1
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”


Developmental surveillance parents descriptions
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


Developmental surveillance parents descriptions1
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


Developmental surveillance parent completed questionnaires
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


Developmental surveillance parent completed questionnaires1
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


Developmental surveillance parent completed questionnaires2
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


Parents evaluation of developmental status peds
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


Guidelines for successful detection
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


Guidelines for successful detection1
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


Guidelines for successful detection2
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


Guidelines for successful detection3
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


Guidelines for successful detection4
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


Guidelines for successful detection5
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


Guidelines for successful detection6
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”


Guidelines for successful detection7
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


Guidelines for successful detection8
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


Guidelines for successful identification
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


Developmental surveillance conclusions
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


Developmental surveillance conclusions continued
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)


Developmental surveillance childserv
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


Resource inventory of services childserv
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


Triage and referral system

Triage and Referral System

ChildServ

1-888-74CHILD


Childserv the process scenario 1 clear concerns no obstacles
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


Childserv the process scenario 2 same family limited access
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


Childserv the process scenario 3 unclear problem
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


Childserv the process scenario 4 significant delays
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


Ancillary activities childserv
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


Experience to date childserv
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


Experience to date childserv1
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


Summary
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


Summary continued
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


Summary continued1
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


References
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.


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