Transcript Developmental Surveillance and Screening

Development of Concern!
What Next ?
Utah Consortium
5/11/04
Katherine TeKolste, MD
Developmental Pediatrician
Center on Human Development and Disability
University of Washington
Seattle, Washington
WHAT TO DO:
• Listen to parent concerns
– 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
Overview
• Talking with parents about concerning results
• Parents as partners – monitoring, referring
• Further evaluation - ‘If unsure, REFER’
– Confirm/refute presence of delays
– Connect with interventions
– Establish etiology, if possible
• Assist parents – information, support
• Coordinate care
Nickel RE, Squires J, 2000.
Basic Screen
Parent Report Measure
No Problem
Suspect Problem
Office screen
or referral for
eligibility
testing
Office Screen (optional)
General or sub domain
Suspect Problem
No problem
Eligibility Testing –Habilitation/Rehab
Diagnostic Testing – Medical w/u
Refer to
services
Problem
No problem
Continue to
monitor
development
Clinical Judgment
• Environmental issues
– Back to sleep immaturity in prone
– Family stressors
• Biologic risks that might be explanatory?
– Residual respiratory problems in preemie with
gross motor immaturities/no pathology
Options
• Minor concerns – no pathology/ ‘immaturity’
– Developmental activities
– Consider referral – HS/EHS, Parenting classes, support
programs, activity programs
– Reassess in near future
• More than minor concerns or pathology
– Further assessment –
• In office
• EI program or school district, PHD, home visit
• Specialty referral
Overview
• Talking with parents about concerning results
• Parents as partners – monitoring, referring
• Further evaluation - ‘If unsure, REFER’
– Confirm/refute presence of delays
– Connect with interventions
– Establish etiology, if possible
• Assist parents – information, support
• Coordinate care
Suggestions for Talking About
Screening Results
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Provide information in a timely manner
Use family’s primary language, clear terms
Avoid judging cultural or linguistic differences
Explain child’s score in relation to cutoff points
Avoid using negative terminology – fail, abnormal
Emphasize results from screening
– may be ‘inaccurate’ and
– do not provide in depth information about a child’s
abilities
ASQ manual
Suggestions for Talking About
Screening Results
• Emphasize child’s current skills
• Emphasize family skills and resources
• Take time to talk about family’s perception
of their child’s strengths and weaknesses
• Talk to the family about additional
resources and community services
ASQ manual
Communication of Screening
Results
• (Reemphasize) focus on positives
• Give activities and actions
• Stress need for further evaluation,
monitoring and follow-up
• Help the parents to inform others
Developmental Delay vs MR
• IQ testing generally not predictive until 8
years of age.
• Under 6 years – generally use term
‘developmental delay’
• Some children will ‘catch up’
developmentally – but many will not
• Monitor progress, inform parents
Overview
• Talking with parents about concerning
results
• Parents as partners – monitoring, referring
• Further evaluation - ‘If unsure, REFER’
– Confirm/refute presence of delays
– Connect with interventions
– Establish etiology, if possible
• Assist parents – information, support
• Coordinate care
Parents as Partners
• Developmental surveillance at home
– Charts, brochures, books, and parentcompleted tools
• Developmental enhancement
– Activities – e.g. Reach out and read, play
groups, preschools, parenting groups, library
and bookstore story times, library card/usage,
literacy programs for parents
Minor Concern about Development
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Provide general developmental
stimulation activities – e.g. ASQ activities
Assess risk factors
Access general community resources
Schedule recheck or refer for further
assessment
http://www.talaris.org/timeline.htm
This research-based timeline is organized by the
child's age. It serves as a general guide to the five
amazing ways a child grows, from birth to 5.
•Social - Emotional - how children feel and how they learn to relate to others
•Cognitive - how children learn and think
•Language - how children learn sounds, words, and sentences
•Sensory - how children hear, see, taste, smell and feel
•Motor Skills - how children learn to skill to sit up, crawl, walk, and run
As you'll see, each milestone shows a range of ages typically seen in children's
development, but a child may not meet every milestone and still be progressing normally.
Don't be surprised if your child's growth is different from what's included on this timeline,
or if your child develops more quickly in some areas than in others. Above all, enjoy
learning about the many fascinating ways children develop. If you have any concerns
about your child's growth and development, please seek a health care professional.
Home Page: There are two ways you can
navigate the home page.
•Navigating by age:
Click on the age groups in the photos or at the
top of the page. To see another age group:
•click on another age group at the top.
•click on the blue arrows near the top to
go up or down by age.
•use the scroll bar under the photo to
move the information left or right.
•Navigating by the five areas of
development:
These five areas are listed in boxes to the
left of the photo. Just click on each box
for more information about the area of
development you want, and then choose
an age group (see above).
•Social/Emotional
•Cognitive
•Language
•Sensory
•Motor
Parent Resources
• AAP Brochures
• Developmental charts
• Websites
– Talaris website – www.talaris.org
– Zero to Three www.zerotothree.org
• ‘The magic of everyday moments’ brochures
– CHILD Profile – www.childprofile.org –
Developmental charts
– First Signs – www.firstsigns.org
– CDC – Natl Center on Birth Defects and DD http://www.cdc.gov/ncbddd/autism/actearly/
AND…
• Listen to parent concerns
– Avoid the ‘Don’t worry, he’ll grow
out of it.’ trap
• Assess risk factors
• Continue to monitor
• Give parents activities, ways to
monitor and resources
• Further workup - IF UNSURE,
REFER
Major Concern
Perform further screening/assessment
– Developmental/functional assessment
• Second level screener by PCP
• Refer for early intervention/school district eligibility
evaluation and services
– Diagnostic/etiologic work-up
• Depending on level and type of concern• PCP and/or
• Refer for subspecialty consultation
Screening Methods
‘Level 2’
Level 2 Screening
• Review comfort and ability to do this
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Time consuming
Us. requires training in the tool used
Need consistent experience in using tool
Often not well reimbursed
• But can be fun!
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Language
Social-emotional/ temperament
Motor
Autism
‘Comfortable’ for PCP
• Language screens
– ELMS II – (0-36 mos)
– MacArthur-Bates Communicative Development Inventory
• Words and Gestures (Infant form; 8-16 mos)
• Words and Sentences (Toddler form; 16-30 mos)
– Wetherby-Prizant – CSBS-DP; Communication & Symbolic
Behavior Scales (6-24 mos)
• Motor screens
– Infant Motor Screen – 4-16 months
– Alberta Infant Motor Scale (AIMS) – birth to 18 months
– Harris Infant Neuromotor Test (HINT)
Other Tests
• Socio-emotional screens, behavior screens
– ASQ-SE – 4m-6y
– Pediatric Symptom Checklist – 4-18yo
– BITSEA (Brief Infant Toddler SocialEmotional Assessment) – 1-4 years;
– see Pediat in Rev, Aug 2002.; www.dbpeds.org
Committee on Children with
Disabilities – Tools Discussed
• Direct examination of child’s skills
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Denver II
Bayley Infant Neurodevelopmental Screener (BINS)
Battelle Developmental Inventory
Brigance Screens CAT-CLAMS –
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designed with PCPs in mind
Cognitive and language skills assessed separately
Parental report and direct testing
However, reported low sensitivity (true negatives), although
very high specificity (true positives)
Committee on Children with
Disabilities (cont)
• Behavior and Psychosocial
– TABS – Temperament and Atypical Behavior
Scale
– Carey Temperament Scales
– Eyberg Child Behavior Inventory
– Pediatric Symptom Checklist
– Family Psychosocial Screening (Kemper)
AAN Autism Parameter
• CHAT –Checklist for Autism in Toddlers
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Developed in England for children at 18 m
Inexpensive, easy to administer, quick
9 Parent and 5 provider items to complete
High specificity (minimizes over-referrals because does not pick
up children without difficulties), relatively low sensitivity (Does
not adequately identify majority of children with difficulties)
– Screening only – child must be referred for further assessment
• M-CHAT – Modified CHAT
– 23 yes/no items
– Initial screening of 1076 children – preliminary sensitivity - .87
(true positives); specificity .99 – true negatives
– Use at 18 and 24 months
Autism (cont.)
• PDDST-II : Pervasive Developmental
Disorders Screening Test II
– Parent completed, 5 minutes
– Helps PCP determine if further screening
needed
– Less is known about sensitivity and specificity
Developmental Screening CPT
Codes
• 96110 – Developmental testing; limited,
with interpretation and report
• 99420 – Administration and interpretation
of health risk assessment instrument
• 96115 – Neurobehavioral status exam with
interpretation and report, per hour
» Every Child Deserves a Medical Home. AAP
Mental Health Screening
• 96115 – Neurobehavioral status exam with
interpretation and report, per hour
• 96117 – Neuropsychological testing battery
with interpretation and report, per hour
• 96420 – Administration and interpretation
of health risk assessment instrument
» Every Child Deserves a Medical Home, AAP.
Refer for Further Assessment and
Services
• Habilitation/rehabilitation and educational services
– Early Intervention Providers
– School District
– Therapy
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Hearing Assessment
Vision Assessment
Subspecialty evaluations
Reproductive Counseling
Overview
• Talking with parents about concerning results
• Parents as partners – monitoring, referring
• Further evaluation - ‘If unsure, REFER’
– Confirm/refute presence of delays
– Connect with interventions
– Establish etiology, if possible
• Evaluate and treat associated medical problems (e.g. sleep
disorders, spasticity, seizures)
• Assist parents – information, support
• Coordinate care
Further Etiologic Assessment
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Handouts - 2 flow sheets for evaluation + Listing of minor dysmorphic
features
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References
– Practice Parameter: Evaluation of the Child with Global Developmental Delay –
AAN. Shevell M et al. Neurology 60:367-380, 2003.
– Critical Elements of Genetic Evaluation and Genetic Counseling: Individual with
global developmental delay/non-specific mental retardation. 1998.
www.gemdatabase.org/GEMDatabase/WA-CE/mrdd98.htm
– Diagnostic Evaluation of Developmental Delay/Mental Retardation. Battaglia A,
Carey JC. Am J Med Genet. 117C:3-14, 2003.
– Developmental Delay and Mental Retardation. Nickel RE. In The Physician’s
Guide to Caring for Children with Disabilities and Chronic Conditions. Nickel RE,
Desch LW. Eds. Paul H. Brookes Publishing Co, 2000.
– Developmental Delay in Children Younger than 6 Years. Davis BE, Bennett FC. In
Pediatric Decision Making, 4th Edition. Berman S, ed:. Mosby, Philadelphia,
2003.
Further Work Up for Etiology –
WHY?
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Estimation of recurrence risk
Accurate prognosis
Need for medical follow-up
On rare occasions – specific therapeutic
interventions
» Shevell MI et al. Brain and Devel. 2001.
AAN – Staged Approach to
Evaluation (2003)
• All children
– Detailed history and PE, including autism/lang
screening
– Vision and audiologic examination
– Check newborn screening results or consider metabolic
screening
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Capillary blood gas
Serum lactate and ammonia levels
Serum amino acids
Urine organic acids
Thyroid function tests (T4, TSH)
AAN – Staged Approach to
Evaluation (2003)
• EEG, if suggestive history for Sz or underlying
epilepsy syndrome
• If history of lead exposure – lead screening
• If family history of specific disorder – screen for
that disorder
• Family history nonspecific –
– If dysmorphic features – karyotype
– If CP, microcephaly, focal findings, focal Sz, or concern
about CNS injury/malformation – MRI/CT scan
AAN – Staged Approach to
Evaluation (2003)
• No clinical features to suggest a specific
diagnosis less likely to find a diagnosis
– Consider MRI, cytogenetic studies and Fragile X
screening. If these are negative, consider metabolic
history and screening, subtelomeric rearrangement
testing and genetic consultation
• Parental consanguinity, history of fetal loss, or
developmental regression 
– Consider metabolic eval, neuroimaging, EEG,
cytogenetic studies, and consultation with genetics and
ophthalmology
Indications for Chromosomal
Analysis
• Two or more major malformations or combination of
major and minor malformations
• DD and 3 or more minor anomalies
• DD and under- or over-growth
• DD and marked hypotonia
• Conotruncal congenital heart defect (r/o 22q11 deletion)
• Ambiguous genitalia
• Maternal history of ≥3 early pregnancy losses
» Nickel RE, Desch LW. Eds. The Physician’s Guide to Caring for
Children with Disabilities and Chronic Conditions. 2000.
Overview
• Talking with parents about concerning results
• Parents as partners – monitoring, referring
• Further evaluation - ‘If unsure, REFER’
– Confirm/refute presence of delays
– Connect with interventions
– Establish etiology, if possible
• Evaluate and treat associated medical problems (e.g. sleep
disorders, spasticity, seizures)
• Assist parents – information, support
• Coordinate care
Delays Confirmed
• Family needs
– Intervention
• Family stress, emotional and behavioral issues
– Resources
• Equipment
• Financial assistance
• Respite care
– Case management
• Referrals and coordination of care
• Transition support
– Information
• Diagnosis Specific – including risks for future offspring
• Support and empowerment
– Parent organizations – e.g. Family Voices, Parent-to-Parent
Top 10 Services Needed
• Parent ranking
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Community resource info
Financial info
Parent support groups
Recreational opportunities
Psychological services
Vocational counseling
Summer camps
Dental treatment
Respite care
Help with behavior
problems
• Physician view of what
families want!
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Respite
Day care
Parent support groups
Help with behavior
problems
Financial information
After school child care
Help with
physical/household changes
Vocational counseling
Psychological services
Liptak G, Revell G Pediatr
Parent – Web Resources
• www.ddhealthinfo.org – excellent information on
specific disorders and general issues related to DD
• www.familyvoices.org
• Transition timelines – chronic disease/DD http://depts.washington.edu/healthtr/Timeline/time
line_instr.htm (English, Spanish, Russian,
Vietnamese, Chinese)
• Others
Focus on strengths and maximal
independence
Overview
• Talking with parents about concerning results
• Parents as partners – monitoring, referring
• Further evaluation - ‘If unsure, REFER’
– Confirm/refute presence of delays
– Connect with interventions
– Establish etiology, if possible
• Evaluate and treat associated medical problems (e.g. sleep
disorders, spasticity, seizures)
• Assist parents – information, support
• Coordinate care
Care Coordination Issues – EI
Programs
• One third (36%) of pediatricians think lack of
feedback from the EI program about child
progress/outcomes is a barrier to EI referral
• About half of pediatricians report:
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Notification of receipt of referral (47%)
Receiving IFSP and progress report (51%)
Informs of reasons for enrollment decisions (53%)
Notifies of child’s discharge from program (46%)
» AAP Periodic Survey of Fellows #53. 2004.
Care Coordination Issues
• Knowledge of resources – panel and handouts
today
• Information transfer
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Communication forms
Referral forms
“Blue Organizer” – patient/family facilitated
?Electronic formats (Whatcom Co. ‘Pursuing
Perfection’ grant)
– Emergency Room forms for CSHCN, and other tools at
www.medicalhomeinfo.org
Summary
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Listen to parent concerns
Assess risk factors
Monitor
Give parents activities and
resources
• IF UNSURE, REFER