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EARLY DETECTION OF DEVELOPMENTAL
DELAYSHow 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
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
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 parentprofessional collaboration
Describe a community-based approach to enhancing
developmental surveillance.
DEVELOPMENTAL PROBLEMS
Rationale 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: selfesteem; self-confidence
Legal mandate
DEVELOPMENTAL PROBLEMS
Rationale 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
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
“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
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
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 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 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 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
“…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
Information
available from parents
– appraisals (opinions of children’s development)
» concerns
» estimations
» predictions
– descriptions
» recall
» report
DEVELOPMENTAL SURVEILLANCE
Parents’ 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’ 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
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’ 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
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 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 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)
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
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
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
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
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
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
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
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
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
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
Expert
opinion and research evidence support
developmental surveillance as “optimal”
clinical practice for monitoring children’s
development
With proper technique, surveillance is familyfocused, accurate, efficient, and can guide
clinical decision making
DEVELOPMENTAL SURVEILLANCE
Conclusions (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
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
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
ChildServ
1-888-74CHILD
ChildServ- The Process
Scenario 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
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
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
Child Health Provider
Motor Delays and Hearing Loss with a History
of Prematurity and Low Birth Weight
Birth to Three Referral
ANCILLARY ACTIVITIES
ChildServ
Project
Team monthly meetings
Advisory Committee quarterly meetings
Health Care Provider Site Liaisons semiannual meetings
Satisfaction surveys
– parents
– child health care providers
Quarterly
newsletter
EXPERIENCE TO DATE
ChildServ
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
ChildServ
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.