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

• 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 2

Developmental monitoring

is more than screening for developmental delay

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Developmental Monitoring Includes:

• Assessing for risk factors for adverse developmental outcomes – Biologic – Environmental TeKolste Utah 5-04 4

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 5

Child Development Caveats

• Development exists on a continuum • Children manifest skills variably, inconsistently • Developmental problem prevalence increases with age – 2-3% of 0-18 month olds – 10% of 24-72 month olds – 16% of 0-21 year olds TeKolste Utah 5-04 6

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 7

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 8

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 9

Over-Identification ?

• Borderline kids need help too • Developmental activities • Preschool, Head Start, Early Head Start • Other TeKolste Utah 5-04 10

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 11

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

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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 13

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 14

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 TeKolste Utah 5-04 15

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 16

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 TeKolste Utah 5-04 17

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 18

AAP Physician Survey Screening 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 19

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 20

Detection Rates

Without Tools With Tools

Developmental Disabilities 30% identified Palfrey et al.

J Peds

. 111:651-655, 1987.

70-80% identified Squires et al.

JDBP.

17:420-427, 1996. Mental Health Problems 20% identified Lavigne et al.

Pediatr

.

91:649-655, 1993.

80-90% identified Sturner.

JDBP.

1991.

12:51-64, TeKolste Utah 5-04 21

Practices for Identification of Developmental Delay

90% 80% 70% 60% 50% 40% 30% 20% 10% 0% AAP Sices Illinois Inquiry Checklist Scrn Tool Denver II

Utah 5-04 22 Sices L, et al.; STEPP Program

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 23

Utah 5-04 Autism Summit, 2003 24

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 25

Who?

Health Promoters Parents Surveillance – ‘Individualized’ (Child Find) Primary Care Providers •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

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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 27

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 (+) TeKolste Utah 5-04 28

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 TeKolste with a good instrument!

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Who?

Health Promoters Formal Screening – Standardized Tool Parents Primary Care Providers

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)

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Review of Screening Tools

Parent-Completed

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 34

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 Glascoe FP Utah 5-04 35

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 36

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 TeKolste Utah 5-04 37

Screening Instruments

Test: Competencies measured:

Ages and Stages Questionnaires (ASQ) Communication, fine motor, gross motor, Personal-social, problem-solving Child Development Inventories (CDI) Language, motor, cognitive, social, behavior Parent Evaluation of Developmental Status (PEDS) Parents’ concerns about learning, development, and behavior TeKolste Utah 5-04 38

Screening Tests

ASQ CDIs PEDS Who completes

Parent Parent Parent

Age of child

4-60 m 0-72 m 0-8 y

Time to complete

10-20 m 10 m 2 m + TeKolste Utah 5-04 39

Parent’s Evaluation of Developmental Status (PEDS)

• Birth to 8 years of age • Written at 5 th 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 40

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?

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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 42

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 43

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 44

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 45

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 9 th Grade level TeKolste Utah 5-04 46

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 TeKolste Utah 5-04 47

Utah 5-04 N. Carolina ABCD 48

Practice-Based 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 50

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 51

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 TeKolste Utah 5-04 52

In Examination Room: Parent completes ASQ while waiting PCP scores ASQ Discusses issues and results with parents EI specialist reviews all completed ASQs 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. TeKolste Recheck at next 53 Utah 5-04 Well child visit

North Carolina ABCD Results: Increased Percent of Children Screened

70 60 50 40 30 20 10 0 Baseline 1999 1st Quarter 2nd Quarter 3rd Quarter 4th Quarter ASQ Y2

Utah 5-04 National Academy for State Health Policy. Dec 2003. ABCD: Lessons 54

Results Using ASQ Practice-Based North 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 55

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 56

Parent Survey Comments Snohomish 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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Basic Screen Nickel RE, Squires J, 2000.

Parent Report Measure Suspect Problem No Problem Office screen or referral for eligibility testing Refer to services Office Screen (optional) General or subdomain Suspect Problem No problem Eligibility Testing Diagnostic Testing Problem No problem TeKolste Utah 5-04 Continue to monitor development 58

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 59

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 60

Just because we don’t know what is

best

doesn’t mean we shouldn’t do

better

.

Tracy Garland Washington Dental Foundation

Summary

• Listen to parent concerns • Assess risk factors • Monitor • Give parents activities and resources • IF UNSURE, REFER TeKolste Utah 5-04 62