EARLY DETECTION OF DEVELOPMENTAL DELAYS- How Do You “Measure-Up”? Paul H. Dworkin, MD Pfizer Visiting Professor in Pediatrics Wright State University School

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

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

Dobos et al, J Dev Behav P ediatr 1994;15:348

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

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 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 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 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 PROBLEMSPediatricians’ Attitudes

“Earliest possible identification willincrease chances for successful outcomesfor children with…”

Strongly agree/agree (%)Cerebral palsy 88Mental retardation 88Learning disabilities 98Language impairment 100

Dobos et al, J Dev Behav Pediatr 1994; 15:348

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

Dobos et al, J Dev Behav Pediatr 1994;15:348

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


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


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


Tests with more favorable psychometric properties (continued)– Brigance Screens

» 21-90 months of age; 15 minutes to administer

» high sensitivity, specificity

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 SURVEILLANCEElicit Parents’ Opinions and Concerns

Information available from parents– appraisals (opinions of children’s development)

» concerns

» estimations

» predictions

– descriptions» recall

» report

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 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 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 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 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


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


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)

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

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


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


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


4. Findings on developmental screening tests must be interpreted with caution– issues with reliability, validity, norms– limited evidence of validity within practice setting


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


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


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”


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


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

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 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 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 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 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

ChildServ1-888-74CHILD

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 ProcessScenario 2: Same Family, Limited Access

ChildServ

MIOP Referral for Outreach

Referrals as Above: MIOP Delivers Information

Two Week Follow-up by MIOP


ChildServ- The ProcessScenario 3: Unclear Problem


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


ChildServ- The ProcessScenario 4: Significant Delays


Motor Delays and Hearing Loss with a History of Prematurity and Low Birth Weight

Birth to Three Referral

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 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 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

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)

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 (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 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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EARLY DETECTION OF DEVELOPMENTAL DELAYS- How Do You “Measure-Up”? Paul H. Dworkin, MD Pfizer Visiting Professor in Pediatrics Wright State University School