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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. Overview.

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developmental surveillance and screening monitoring to promote optimal development

Developmental Surveillance and ScreeningMonitoring 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

overview
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

TeKolste Utah 5-04

slide3

Developmental monitoring ismore than screening for developmental delay

TeKolste Utah 5-04

developmental monitoring includes
Developmental MonitoringIncludes:
  • Assessing for risk factors for adverse developmental outcomes
    • Biologic
    • Environmental

TeKolste Utah 5-04

developmental monitoring
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

TeKolste Utah 5-04

screening
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

TeKolste Utah 5-04

slide8

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

TeKolste Utah 5-04

slide9

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)

TeKolste Utah 5-04

over identification
Over-Identification ?
  • Borderline kids need help too
  • Developmental activities
  • Preschool, Head Start, Early Head Start
  • Other

TeKolste Utah 5-04

early intervention works
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

TeKolste Utah 5-04

what to do
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

TeKolste Utah 5-04

parental expectations
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

TeKolste Utah 5-04

what to do14
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

TeKolste Utah 5-04

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

Risk Factors

TeKolste Utah 5-04

what to do16
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

TeKolste Utah 5-04

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

Surveillance & Screening

TeKolste Utah 5-04

slide18

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

TeKolste Utah 5-04

aap physician survey screening tool use
AAP Physician SurveyScreening 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

TeKolste Utah 5-04

accuracy of clinical impression
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)

TeKolste Utah 5-04

detection rates
Detection Rates

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practices for identification of developmental delay
Practices for Identification of Developmental Delay

TeKolste Utah 5-04

AAP Periodic Survey #53; Sices L, et al.; STEPP Program

snohomish county physician survey 2003
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

TeKolste Utah 5-04

slide24
TeKolste Utah 5-04

Commonwealth Fund; Schor E. Autism Summit, 2003

improving surveillance and screening methods
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

TeKolste Utah 5-04

slide26

Surveillance – ‘Individualized’ (Child Find)

Who?

  • 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

Parents

Primary Care Providers

Health Promoters

TeKolste Utah 5-04

snohomish physician survey 2003
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%

TeKolste Utah 5-04

upiq learning collaborative identification possible dd
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 (+)

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slide29

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!

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slide30

Who?

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)

Parents

Primary Care Providers

Health Promoters

TeKolste Utah 5-04

screening tools
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.

TeKolste Utah 5-04

accuracy of parental report
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

TeKolste Utah 5-04

Glascoe FP

optimizing parental screening
Optimizing Parental Screening

Literacy issues

‘Would you like to complete this on your own or have someone go through it with you?’

TeKolste Utah 5-04

screening administration
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

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slide38

Screening Instruments

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slide39

Screening Tests

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parent s evaluation of developmental status peds
Parent’s Evaluation of Developmental Status (PEDS)
  • Birth to 8 years of age
  • Written at 5th 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

TeKolste Utah 5-04

parent s evaluation of developmental status peds41
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?

TeKolste Utah 5-04

peds continued
PEDS - Continued
  • Sorts children into high, moderate or low risk for developmental problem
  • Identifies when to screen, refer, counsel or monitor

TeKolste Utah 5-04

ages and stages questionnaire
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

TeKolste Utah 5-04

ages and stages questionnaire44
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

TeKolste Utah 5-04

ages and stages questionnaire45
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

TeKolste Utah 5-04

child development inventories
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 9th Grade level

TeKolste Utah 5-04

denver ii
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

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slide48

N. Carolina ABCD project

TeKolste Utah 5-04

north carolina practice based developmental screening model
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

TeKolste Utah 5-04

north carolina practice based model
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

TeKolste Utah 5-04

guilford child health
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

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slide53

In Examination Room:

Parent completes

ASQ while waiting

EI specialist

reviews all

completed ASQs

PCP scores ASQ -

Discusses

issues and results

with parents

No

concern

Possible delay –

One or more score

Below cutoff

No delay but

Parental

concern

Referral to EI consortium

Or specific service

Child followed by provider

Or EI specialist

EI specialist

determines

intervention

No action required.

Recheck at next

Well child visit

TeKolste Utah 5-04

slide54

North Carolina ABCD Results:

Increased Percent of Children Screened

National Academy for State Health Policy. Dec 2003. ABCD: Lessons from a Four-State Consortium

TeKolste Utah 5-04

results using asq practice based north carolina
Results Using ASQ Practice-BasedNorth 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)

TeKolste Utah 5-04

north carolina parent survey
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

TeKolste Utah 5-04

parent survey comments snohomish county asq pilot
Parent Survey CommentsSnohomish 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!

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slide58

Nickel RE, Squires J, 2000.

Parent Report Measure

Basic Screen

No Problem

Suspect Problem

Office screen or referral for eligibility testing

Office Screen (optional)

General or subdomain

Suspect Problem

No problem

Eligibility Testing

Diagnostic Testing

Continue to monitor development

Refer to

services

Problem

No problem

TeKolste Utah 5-04

planning considerations
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

TeKolste Utah 5-04

subset schedule examples
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

TeKolste Utah 5-04

just because we don t know what is best doesn t mean we shouldn t do better

Just because we don’t know what is best doesn’t mean we shouldn’t do better.

Tracy Garland

Washington Dental Foundation

summary
Summary
  • Listen to parent concerns
  • Assess risk factors
  • Monitor
  • Give parents activities and resources
  • IF UNSURE, REFER

TeKolste Utah 5-04