RESEARCH ON PEDS:Parents’ Evaluation of Developmental Status

Frances Page Glascoe

Adjunct Professor of Pediatrics

Vanderbilt University

www.pedstest.com

www.forepath.org

“Your teacher wishes me to delineate those watershed occasions in your life

that have led you to become,slowly and inexorably,

a loose cannon.”

Developmental/Behavioral Tasks of Health Supervision Visits

developmental promotion

behavioral guidance and patient education

developmental/behavioral screening

observation/monitoring

reassurance

referral

Reasons for limited use of screening tests

at well visits

screening tests take too long many are difficult to administer children may not cooperate reimbursement is limited not all developmental/behavioral issues are addressedlack of familiarity with referral resources

Detection rates without screening tests

70% of children with developmental disabilities not identified

(Palfrey et al. J PEDS. 1994;111:651-655)

80% of children with mental health problems not identified

(Lavigne et al. Pediatr. 1993;91:649=655)

“Looking Good”

Sample questions to parents that don’t work

wellDo you think he has any

problems…..?

Do you have any worries about her development?

Please tell me any concerns about your child’s learning, development, and behavior.

First Question

Additional QuestionsDo you have concerns about how your

child: 2… .is talking or making 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. Do you have any other concerns?

Sample Parent Responses

He can’t talk plain He’s mean She won’t get dressed or do nothing

for herself He’s slow and behind and can’t do what

other kids can She won’t mind me

I used to be worried but I think he’s doing better

Reliability

Test-retest: 88% consistency over time in parents’ concerns

Inter-rater: 88% agreement in categorization of concerns given two different raters.

Coding agreement 83%, weighted kappa = .74

4 cross-validation studieson 971 subjects

nationally representative sample

varied settings: public health, community practices, day care, schools, etc.

Subjects and Sites

Subjects N = 771

ages 0 - 864% white22% African American14% Hispanic/Other26% low SES 4% enrolled in S.E.

80% mothers18% < H.S. education 5% Spanish- speaking

Child Subjects Parent Subjects

Sites

Middle Tennessee N = 363Tampa, FL N = 112Plymouth, MA N = 114Denver, CO N = 68Carson City, NV N = 114

teaching hospitals N = 134private practices N = 123day care centers/public schools N = 289unenrolled N = 229

Procedures

Parents completed PEDS in writing or by interview

Either a second psychological examiner blinded to parents’ concerns, or the same examiner, blinded to the potential significance of parents’ concerns, administered the concurrent battery

Procedures II

771 children were administered a dx battery (IQ, language, academic, motor)

scores categorized into SE eligibility

logistic regression used to identify concernspredictive of developmental status

Initial Results

130 were eligible for special education 24 had been previously identified

641 were not eligible and performed in the broad range of average on all measures

Predictive Concerns by Children’s Ages

0 - 1 1/2 yrs global/cognitive, expressive language, social, medical/other

1 1/2 - 3 yrs above (except social)+ receptive language

3 - 4 1/2 yrs above (except social)+ receptive language+

gross motor

4 1/2 - 8 yrs above (except social)+ receptive language+

gross motor +fine motor +school

ACCURACY:ACROSS AGE RANGES

AGE SENSITIVITY SPECIFICITY

N % N %

0 - 1 1/2 yrs 3/4 75 66/82 80

1 1/2 - 3 yrs 27/34 79 117/149 79

3 - 4 1/2 yrs 26/35 74 118/165 72

4 1/2 - 8 yrs 42/57 74 172/245 70

TOTAL 98/130 75 473/641 74

No differences in accuracy on the basis of parents’ level of education or parenting experience

Almost all parents’ derive concerns by comparing their children to others

Educated parents, especially dads, 21 times as likely to raise concerns spontaneously.

Children whose parents discussed concerns were 40 times more likely to be enrolled in special education

Do Parental Characteristics Affect Their Concerns?

Evidence-Based Decisions

when and where to referwhen to screen and type of screen

neededwhen to offer developmental promotionwhen to provide behavioral guidancewhen to observe vigilantlywhen reassurance and routine monitoring

are sufficient

Single PredictiveConcern 29% 17% OR = 7.6

Multiple Predictive Concerns 52% Disabled OR = 11.4 16% Below Average

No predictive concerns but communication barriers 19% 0R = 4.6 35%

Nonpredictive Concerns 7% 13%OR = 1.3 43%

11%

3%

20% 23%

No Concerns 5% 11%OR = 1.0

Screening in Response to Multiple Predictive Concerns11%

DIAGNOSIS

Multiple concerns (N = 27)but passed Brigance/BDIST, or no significant concerns

435 76

335

47100

29

NO YES

Multiple concerns and failed Brigance/BDIST (N = 36), or single significant concern

Sensitivity 47/76 = 62% 74%Specificity 335/435 = 77% 73%

prior

Referral Accuracy: Multiple Predictive Concerns

79% (19/24) of those needing speech-language evaluations had parents with two or more concerns about receptive language, self-help,

school or social skills

71% (15/21) of those needing psychological/educational testing had parents withone or fewer such concerns

11%

Screening in the Presence of a Single Predictive Concern orCommunication Barrier23%

3% DIAGNOSIS

no concerns or single concernor communication barrier and passed Brigance Screen

352 56

280

4178

15

NO YES

multiple concerns, or single concern/communication barrier but child failed Brigance Screen

Sensitivity 41/56 = 73% 75%Specificity 280/352 = 80% 74%

prior

What of those who fail screening but aren’t eligible for special education?

23%

3% DIAGNOSIS

no concerns or single concernor communication barrier and passed Brigance Screen

280

4178

15

NO YES

multiple concerns, or single concern/communication barrier but child failed Brigance Screen

These children tended to perform below average in IQ, academics, and/or language—the better predictors of school success

Developmental Screening in Response to NonPredictive Concerns or No Concerns

DIAGNOSIS

no concerns or nonsignificant concerns and passed Brigance/BDIST Screens

435 76

246

65189

11

NO YES

multiple concerns, single concern/communication barrier or no/nonsignificant concerns and failed Brigance/BDIST

Sensitivity 65/76 = 85% 74%Specificity 246/435 = 56% 73%

prior

20%

43%

Behavioral Screening in the Presence of No or Nonpredictive Concerns:

NonpredictiveConcerns

20%1 1/2 SDs above mean

137 19

91

1346

6

NO YES

Sensitivity 13/19 = 68%Specificity 91/137 = 66%

NO

YES

43%

98

1326

2

124 15

NO YES

13/15 = 87%98/124 = 79%

>4 1/2 yrs. < 4 1/2 yrs

Evidence-Based Decisions

when and where to referwhen to screen and type of screen

neededwhen to offer developmental promotionwhen to provide behavioral guidancewhen to observe vigilantlywhen reassurance and routine monitoring

are sufficient

Rationale for Electronic PEDS

Empower parentsEnsure consistency in scoring and administrationEnhance test availability in multiple languages and locationsEnable tailoring for local resourcesCreate an electronic database for research and

quality improvementGive immediate access to patient education

information

Electronic PEDS

www.forepath.org

Web accessible PEDS for Licensed PEDS users

Self-selected parents

PEDS scoring Web service for EMR/EHR and other electronic systems

Directions for Future Research

Do parents become more accurate when administered PEDS over time?

Does the addition of professional judgment improve accuracy?

Can PEDS detect school problems in older children, autism, CP, etc. ?

Frances.P.Glascoe@Vanderbilt.edu