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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. ?