University of Pennsylvania School of Medicine
Translating Evidence-based
Developmental Screening into
Pediatric Primary Care
James Guevara, MD, MPH
Center for Pediatric Clinical Effectiveness
Seminar Series
October 3, 2008
The Children’s Hospital of Philadelphia
Educational Aims
1.
To review current knowledge of developmental
problems and interventions in early childhood
2.
To update participants on current screening
recommendations
3.
To understand barriers to implementation of
developmental screening
4.
To disseminate information on TEDS Study
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Declarations
• Current study is funded by a grant from CDC
R18 DD000345
• No conflicts of interest to declare
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Relevant Definitions
• Developmental delay (DD): when a child does not
meet developmental milestones within an expected
period of time in one or more domains (motor,
speech & language, social & behavioral, cognitive)
• Presumptive Condition: health condition that is
strongly associated with DD, presumptive eligibility
for early intervention
• At Risk Condition: health condition that is
associated with DD, may require close monitoring
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High Prevalence of DD
• Prevalence estimated at 16.8% in U.S., @2% have
severe disability
• Strong association with certain medical and genetic
conditions, eg. HIV or Down’s Syndrome
• Greater prevalence among lower SES children
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Risk Factors for Developmental Delay
• Very Low birthweight or prematurity
• Known genetic disorders or syndromes (presumptive
conditions), eg. Down’s Syndrome
• Known chronic medical conditions (presumptive
conditions), eg. HIV
• Family history of DD: eg. Autism in sibling
• Psychosocial factors: eg. poverty, child abuse and
neglect, failure to thrive, maternal depression,
parent substance abuse, plumbism
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Poor Prognosis for DD
1 or more DD
No DD
N=16.8%
N=83.2%
Fair/poor health
6.2%
2.2%
Grade retention
31.3%
12.6%
Special Education
15.3%
0.5%
MD visits
4.1/yr
2.8/yr
9.4/100/yr
4.0/100/yr
Hospitalizations
Boyle et al, Pediatrics 1994; 93:399-403
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Treatment of DD: Parallel Tracks
• Medical Management: ancillary services and
multidisciplinary specialty services (diagnosisspecific)
• Individuals with Disabilities Act (IDEA):
federal mandate for EI (diagnosisindependent)
- Part C (Birth to Three)
- Part B (Early childhood special education)
~ 3-5 years old (in some states, the age is
birth to 5)
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Varying Eligibility for EI
• States must provide services to:
- Children experiencing developmental delays
- Children with established presumptive conditions (eg, HIV,
Down’s Syndrome)
• States may provide services to:
- Children at risk of experiencing a developmental delay (eg
VLBW, prematurity, plumbism, abuse/neglect, parent SA)
• Each state is required to establish a definition of eligibility for
services for 5 developmental domains:
- Motor
- Communication
- Cognitive
- Daily living
- Socio-emotional
(Definitions of eligibility differ significantly from state to state)
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Evidence for Effectiveness for EI?
• EI has beneficial effects on cognitive functioning:
greater school achievement, less grade retention,
less use of special education
• EI has beneficial effects on social functioning:
lower teenage pregnancy, less delinquency
• Only @30% of children with DD are detected
before school entry
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A: WASI (HLBW)
B: PPVT-III (HLBW
C: WJTA-Reading
(HLBW)
D: WJTA-Math
(HLBW)
E: WASI (LLBW)
F: PPVT-III (LLBW)
G: WJTA-Reading
(LLBW)
H: WJTA-Math
(LLBW)
McCormick et al, Pediatrics 2006; 117:771-80
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Surveillance vs. Screening
• Surveillance: ongoing process of recognizing
children who may be at risk of DD
• Screening: use of standardized tools to identify DD
and refine risk
• Evaluation: a complex assessment process of
identifying specific developmental disorders and
needs
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AAP Policy Statement
Pediatrics 2006; 118: 405-20
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Summary of AAP Policy Statements
• Surveillance at all well child visits
• Developmental screening at the 9-, 18-, and 30-month visits
• Autism screening at the 18- or 24-month visits
• Developmental screening at any well child visit in which DD
risk is identified
• Referral for diagnostic evaluation and services for children
who fail screen
• Schedule early return visits for those at risk who pass
screens
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Screening Increases Referrals
No of referrals
80
physician control
year
60
40
physician screening
year
20
ASQ screening
year
0
12 months
24 months
all referrals
screening year
Age (months)
Hix-Small et al, Pediatrics 2007; 120:381-9
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Barriers to Developmental Screening
• Limited time and lack of reimbursement
• Lack of knowledge and training in screening
• Concerns about over-identification
• Difficulty making referrals
Pinto-Martin et al, AJPH 2005; 95:1928
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North Carolina ABCD Project: effort
to overcome screening barriers
Earls et al, Pediatrics 2006; 118:e183-8
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Knowledge Gaps
• Unclear whether feasible to implement
developmental screening in high risk urban
population without statewide support
• Unclear whether urban physicians and families
accept developmental screening
• Unclear whether screening results in increased
identification of DD
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Translating Evidence-based
Developmental Screening (TEDS) Study
• Randomized controlled trial of developmental
screening in four urban pediatric practices
• Assesses implementation of AAP policy statements
on screening
• Funded by CDC (PI Guevara) and Commonwealth
Fund (PI Pati)
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TEDS Study Aims
1. To identify barriers and facilitators to the use of
standardized developmental screening in urban
primary care practice.
2. To assess the feasibility of implementation of the
AAP’s developmental screening policy compared
with usual care
3. To determine the relative effectiveness of the
AAP’s developmental screening policy compared
with usual care
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Framework:Theory of Planned Behavior
Behavioral
Beliefs
Attitude
Toward the
Behavior
Normative
Beliefs
Subjective
Norm
Control
Beliefs
Perceived
Behavioral
Control
Intention
Behavior
Actual
Behavior
Control
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TEDS Study Design
• Mixed methods design combining qualitative and
quantitative components
• Year 1: conduct focus groups with parents, clinicians, and
office staff to identify barriers and facilitators to
screening and map office workflow
• Year 2-3: Randomized intervention with 3 arms:
-Usual care (surveillance)
-Developmental screening by SRS at 9, 18, 24, 30
months
-Developmental screening by PCP at 9, 18, 24, 30 months
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Focus Groups: Parents
• Prioritize development
• Recognition that screening is difficult due to
competing demands
• Preference for developmentally focused visits
• Screening tools would be acceptable:
- serve to stimulate conversation with pediatrician
on development
-identify developmental weaknesses in their child
that could be targeted
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Focus Groups: Pediatricians
• Prioritize time management
• Perception that parents prefer complete well child
exams
• Development important but preference for
maintaining all elements of well child exam
• Mixed receptivity to use of screening tools
-Favorable if other office staff complete screens
-Unfavorable if they have to take additional time
to complete screens
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Study Considerations
• Allow PCPs to prioritize developmental domains and
assist in selection of screening tools
• Conduct provider training in use of screening tools
• Map office flow procedures
• Integrate developmental screening with usual well
child care
• Collaborate with EI provider to acquire referral
outcomes
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Selection of Screening Tools
Visit
General
9 months
ASQ
Language
Socioemotional
Autism
M-CHAT
PEDS
BINS
Denver II
PEDS:DM
18 months
ASQ
CBCS
ASQ:SE
PEDS
LDS
BITSEA
BINS
Denver II
ELM
PEDS:DM
30 months
CLAMS
ASQ
CBCS
ASQ:SE
PEDS
LDS
BITSEA
Batelle
Denver II
PEDS:DM
ELM
CLAMS
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Ages and Stages Questionnaire (ASQ)
Visits:
Accuracy:
Logistics:
9, 18, and 30 month visits
Domains:
Family:
general parent report of milestones
Training:
teaches milestones
Community:
accepted by Childlink, supported by
PA DPW
Sensitivity 0.75, specificity 0.86
10-15 min, 30 questions, age-specific
forms, EHR compatible
family-friendly, concrete, 4-6 grade
literacy
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Modified Checklist for Autism in
Toddlers (M-CHAT)
Visits:
18 and 24 month visits
Accuracy:
sensitivity .85, specificity .93
Logistics:
23 questions yes/no, EHR compatible, 2 minutes
Domains:
autism only
Family:
easy to complete and score, only hard for families
with some concern
Training:
intro to autism
Community:
screener used by Childlink
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Provider Training Materials
• Developed training video and
educational materials for
ASQ and MCHAT
• Allowed for group or
individual training at
provider discretion
• Provided CME credits for
attendings
• Incorporated resident
training into overall
residency curriculum
“After a crumb or cheerio is dropped into a bottle, does
your child purposely turn the bottle over to dump it out?”
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Office Flow Procedures
Mail reminder letters 45 days before the study visit’s tentative due date
Check if the child has an appointment 15 days in advance; mail appropriate questionnaire if child is in PCP arm
Reminder phone call 1 day in advance
Get screening tools ready one day prior to appointment.
Administer/score the screening tools and entering the results in EPIC on the day of the appointment.
PCP interprets scores and provides feedback to family; PCP completes the Well-Child visit, makes the decision
regarding EI referral and faxes the referral forms
SRS/RA enters data in research database; SRS follows up with family (in the SRS arm only); SRS generates a
list of all EI referrals on a monthly basis, faxes to Childlink, and follows up on them.
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Integration of Screening into Well
Child Care
• Facilitate recruitment with electronic prompt
• Place screening tools (or at least scoring grids) into
EHR with automated scoring
• Assist PCPs and schedulers with identifying study
participants and their allocation assignment in EHR
• Dual schedule SRS with PCP
• Generate screening reminder alerts for 9-, 18-, 24-,
and 30-month intervention arm visits
• Use of 96110 CPT code for provider RVUs
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Electronic recruitment prompt
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Collaboration with EI
• Memorandum of agreement to share data and fax
EI health appraisals/prescriptions
• Monthly Tracking spreadsheet generated and
maintained by each PCC and updated by Childlink
• Agreement by Childlink to accept ASQ and MCHAT
results as part of their intake
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Childlink Referral Spreadsheet
ASSES.
REF.
FIRST
DATE
DATE CHILDLINK# NAME
####### #######
S
LAST
NAME
Palin
MRN#
XXXX
DOB
XXXX
SITE
DESCRI
PTION
CCPCC
SPECIAL
TE/THER CONSIDERA
RESPON CHILD
MDE
APIST
TIONS
RESPONSE SE DATE STATUS DATE
Knowitall Spanish
XXX
Enrolled XXX
DISCHAR
GEW/O
MDE
MDE
DATE
OUTCOME EI OUTCOME
Language
Speech
delay
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Study Procedures
• Eligibility: all children ages 0-30 months without DD
or presumptive conditions or prematurity
• 2100 eligible children recruited across all PCC sites
using EPIC prompts at visits or by direct referral
from PCPs to SRS
• Families consented and followed for 18 months by
RA and SRS
• Randomization will occur following consent visit
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Study Outcomes
• % identified with DD
• % with DD referred to EI
• % referred who complete MDE
• Rates of eligibility for EI services (IFSP): eligible
vs. ineligible (discharged or at risk)
• Family satisfaction with screening/surveillance
process
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Conclusions
• Developmental delays are prevalent in urban high risk
populations
• Use of validated screening tools can increase the
identification of developmental delay
• Barriers exist to the implementation of developmental
screening tools
• Decisions regarding developmental screening tools
involve tradeoffs
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Conclusions
• Important to address provider buy-in and facilitate
their participation
• Map office flow to ensure smooth operation of
procedures
• Integrate developmental screening into current
practices
• To be most effective, developmental screening
requires collaboration with early intervention
programs
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TEDS Study Personnel
• Jim Guevara, MD, MPH
• Marsha Gerdes, PhD
• Susmita Pati, MD, MPH
• Jennifer Pinto-Martin, PhD
• Russ Localio, PhD
• 4 SRS--Lynnette DeShields, Lara Kyriakou, Sofia Baglivo,
Casey Morris
• Ankur Rustgi and Jane Cavenaugh, RA
• Trude Haecker, MD
• Beth Rezet, MD
• Nate Blum, MD
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Role of Developmental Screening
• Pediatricians under-identify DD in their patients
• Pediatricians are better at identifying DD in
patients with phenotypic features or certain
domains of development
• Developmental screening tools can enhance the rate
of identification but require additional time to
administer and score
• Only 23% of pediatricians nationwide routinely use
developmental screening instruments
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Philadelphia County EI
• Referrals made to Childlink (PHMC) birth to 34
months or Elwyn Inc 34 months to 60 months
• Initial phone assessment: demographics and ASQ
• In home (alternatively at Childlink) visits:
completion of MDE within 45 days of assessment
• MDE outcome: eligible (25% delay in one or more
areas) with development of IFSP vs. ineligible
• Ineligible: discharged or placed in at risk program
with follow-up Q2 months
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