Transcript ACB’s of ADD’s

Screening and Surveillance of
Autism and Related Disabilities
How to Change One’s Clinical Practice
Statewide Autism System of Care
Funded by Florida Developmental
Disabilities Council
Health-Care Task Force
One of the doctors we took Gary to told
us, “Well if he’s autistic he could just
snap out of it , like amnesia.” I thought
to myself, “Don’t hold your breath.”
Powers, M., 2000
Learning Objectives
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Discuss why early screening and
surveillance is important.
Define red flags of autism spectrum
disorders.
Review developmental screening tools.
List barriers preventing change in practice.
Describe model for improving screening
practices.
Create aim statement for changing
practice.
Develop next steps to initiate practice
change.
Part 1:
Autism Spectrum Disorders:
Importance of Early Screening
Autism Spectrum Disorders
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Social-communicative disorder
Triad of impairments
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Socialization
Verbal and nonverbal communication
Restricted and repetitive patterns of
behaviors
Unknown etiology, but with strong
genetic basis
What are the Red Flags?
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Inappropriate gaze
Lack of sharing enjoyment or interest
Little or no response to name when called
Lack of coordinated facial expression, gesture,
and sound
Lack of showing
Unusual intonation and/or pitch of voice
Repetitive movements of posturing of body,
arms, hands, or fingers
Repetitive movements with objects
Wetherby et al., 2004
Weatherby et al., 2004
Absolute Indications for
Immediate Evaluation
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No babbling pointing or other gesture
by 12 months
No single words by 16 months
No 2-word spontaneous (not echolalic)
phrases by 24 months
ANY loss of ANY language or social
skills at ANY age
Are We Missing The Boat?
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Average age for diagnosis in United States is 3 to 4
years (Filipek, 1999).
Average age for screening/referral ranges from 24 to
40 months.
However, recommended age for referral by
18 months.
Most physicians rely on their clinical judgment, yet
clinical judgment detects fewer than 30% of children
who have developmental disabilities (Glascoe, 2000;
Palfrey, 1994).
Research shows that using modified developmental
checklists are not adequate for detecting
developmental delays (Committee on Children with
Disabilities, 1994).
Early Screening:
Why?
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Intensive early intervention before age 3
results in greater impact after age 5
(Wetherby et al., 2004).
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Presence of neurologic plasticity at younger ages
Better school placement outcomes (general
education vs. special education) (Harris &
Handelman, 2000)
Better chance of graduating from high school
Greater developmental gains
Higher likelihood to live independently
Positive economic impact over a life-time with
early intervention
General Developmental Screeners
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Recommended General Screening
Tools
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Ages & Stages Questionnaires (ASQ)
Child Development Inventories (CDI)
Parents’ Evaluations of Developmental
Status (PEDS)
Infant/Toddler Checklist for Communication
and Language Development
Communication and Symbolic Behavior
Developmental Profile (CSBSDP)
Autism Specific Screeners
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The Checklist for Autism in Toddlers
(CHAT) (Baron-Cohen, 1992)
Pervasive Developmental Disorder
Screening Test (PDDST) (Siegel,
1998)
Modified Checklist for Autism in
toddlers (M-CHAT) (Robins, Fein, &
Barton, 1999)
Parent’s Evaluation of
Developmental Status (PEDS):
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Relies on information from parents
Can be used in patients birth to 8 years
Screens for both developmental and
behavioral problems
Consists of 10 questions (4th-5th grade
reading level)
Can be used during well-child visits, while
parents are waiting for appointments- takes
about 2 minutes .
Available in English, Spanish, and
Vietnamese
Standardized scoring procedures
Total cost (including materials and
administration) is $1.19 per patient
Ages and Stages
Questionnaire (ASQ):
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Relies on information from parents
Can be used in patients 4 months to 5
years
Screens for developmental problems;
personal/social
Takes 10-15 minutes to complete
Separate 3-4 page form for each well-child
visit (age-specific)
Available in English, Spanish, French, and
Korean
Standardized scoring procedures
No cost associated with tool – can
photocopy
Easy Road from Screening to Dx
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AAP recommends using a general
developmental screening tool at all
well-child visits
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If pass, re-screen at next well-child
visit
If fail, perform appropriate tests (e.g.,
hearing, lead levels, etc.)
If test results are normal then refer
patient to subspecialist and/or Early
Steps
Perceived Barriers
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What prevents healthcare providers
from changing their practice?
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Lack of information
Lack of time
Lack of sufficient money/resources
Lack of necessary staff
_________________ (fill in the blank)
Concrete Barriers
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Patient waiting time before seeing
physician
Total visit time
Utilization of screening tools/instruments
Concern with emotional impact on family
Tracking patients with behavioral and/or
developmental problems
Knowledge of appropriate referral
resources
Appropriate documentation, billing/coding
Part 2:
Changing Clinical Practices
Content adapted from The Improvement Guide, A Practical Approach to Enhancing
Organizational Performance, by Gerald J. Langley et. al, Jossey-Bass, 1996. Figure copied
from Education in Quality Improvement for Pediatric Practice (www.eqipp.org)
Taken from Education in Quality Improvement for Pediatric Practice (www.eqipp.org)
An Effective Aim Statement is:
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Clear. The statement should be read and
understood, without interpretation. What
is trying to be accomplished?
Numerical. There are quantifiable
measures in place to indicate progress.
Realistically Ambitious. The aim is set
high enough that it will have a significant
impact on the practice, but not so high
that it is unrealistic.
Taken from Education in Quality Improvement for Pediatric Practice (www.eqipp.org)
An Effective Aim statement is:
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Focused. The aim is defined so that
the work is not overwhelming or
discouraging, but simplifies the
demands on one’s attention.
Flexible. The aim should allow room
for refinement where several
different solutions to the
performance gap (rather than just
one) are explored.
Taken from Education in Quality Improvement for Pediatric Practice (www.eqipp.org)
Aim Statement Example:
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To use PEDS or ASQ with 25% of
children up to 18 months of age
within 3 months of initiation
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50% by 6 months
75% by 9 months
100% by 12 months
Group Activity- 5 Minutes
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Develop an “Aim Statement” for
using a general developmental
screening tool in your practice.
PDSA Cycles
Copied from Education in Quality Improvement for Pediatric Practice (www.eqipp.org)
Measurement and Data Collection
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Key principles of measurement and data
collection
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Keep it simple - focus on a few measures
Don't measure everything, only things you
need to know
Seek usefulness, not perfection
Integrate measurement into daily routine
Use existing data when possible
Plot data over time
Taken from Education in Quality Improvement for Pediatric Practice (www.eqipp.org)
Ways to Approach Barriers
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Step One: “Know Your Patient Flow”
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Select sample of 20-30 patients and record
time of visit from arrival to checkout.
Choose day/time when wait is likely to be
longest.
If patient arrives early, start counting at
scheduled appointment time.
Have each “station” record time when
encounter starts.
Review results and determine if there are ways
to cut down on visit time.
Adapted from “Office Visit Cycle Time” (www.ihi.org)
Ways to Approach Barriers
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Step Two: “Choose Screening
Instrument”
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Select desired screening instrument.
Choose small sample size of patients
(5-10) to conduct instrument and
record time taken to complete task.
Analyze results to determine best time
to administer instrument.
Ways to Approach Barriers
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Step Three: “Flagging Charts”
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Consider:
Color-coding charts
 Sticker system
 Electronic medical reporting
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Consider starting an ASD registry
Ways to Approach Barriers
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Step Four: “Improved Documentation”
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Perform chart review on 20-30 randomly
selected patients with known developmental
concerns.
Examine “problem lists” (i.e., Are the problem
lists completed for those with suspected
behavioral and/or developmental concerns?).
Determine whether appropriate screening has
been performed (e.g., by target age).
Review percentages of those that have
received proper referral.
Assess quality of “therapies” (parent survey).
Ways to Approach Barriers
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Step Five: “Finding Support Staff”
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Review roles/responsibilities of support staff.
Consider assigning data collection/surveillance
(e.g., medical assistant, nurse).
Allow same person to track referrals and
appropriate follow-up:
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care coordination as in the
“medical home” concept.
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Involve key staff in important brainstorming/idea forming sessions.
Example of Change in Practice
to Increase Early Screening
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Front desk clerk hands out PEDS to parent
at time of check-in.
Choose nurse/medical assistant who could
best collect and score instrument.
Have parent hand over completed PEDS to
above-MA upon being called back for vitals.
MA will score instrument while patient is
having vitals checked and being placed in
room.
Scored PEDS will be placed with chart on
door to await physician’s arrival.
Example of Change in Practice
to Increase Early Screening
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If score is high/low, then MA will also place
sticker on chart for future follow-up.
Physician can review PEDS with family and
make appropriate recommendations.
Can be done in lieu of modified
developmental screeners conducted by
providers.
If 2 minutes are saved with each patient
over an entire day, there may be enough
time to schedule additional patients. This
would likely cover the cost of the
instrument and/or possibly increase
income.
Activity- 10 Minutes
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Develop action plan step(s) for
changing YOUR practice to increase
the use of general developmental
screener(s):
Tips for Success
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Improvement occurs in small steps.
Repeated attempts are often needed to
refine your strategies or implement new
ideas.
Assess regularly to improve or revise the
plan.
Study failed changes for learning
opportunities.
Plan communication to update participants.
Engage leadership support.
Celebrate success.
Adapted from Education in Quality Improvement for Pediatric Practice (www.eqipp.org)
Resources
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First Signs
 www.firstsigns.org/
Education in Quality Improvement for
Pediatric Practice
 www.eqipp.org
Institute for Healthcare Improvement
 www.ihi.org
National Initiative for Children’s Healthcare
Quality
 www.nichq.org
Agency for Healthcare Research and Quality
 www.ahrq.gov
Resources
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American Academy of Pediatrics (2001). The pediatrician’s role in the
diagnosis and management of autistic spectrum disorder in children.
Pediatrics, 107, 1221-1226.
Committee on Children with Disabilities (1994). Screening infants and
young children for developmental disabilities. Pediatrics, 93, 863-865.
Filipek, P.A. et al., (2000). Practice parameter: Screening and diagnosis of
autism. Report of the Quality Standards Subcommittee of the American
Academy of Neurology and the Child Neurology Society. Neurology, 55,
468-479.
Filipek, P. A., et al., (1999). The screening and diagnosis of autistic
spectrum disorders. Journal of Autism and Developmental Disorders, 29,
439-484.
Glascoe, F. (2000). Pediatrics in Review, 21, 272-280.
Harris, S., & Handleman, J. (2000). Age and IQ at intake as predictors of
placement for young children with autism: A four-to six-year follow up.
Journal of Autism and Developmental Disorders, 30, 137-142.
Palfrey, et al., (1994). J Peds, 111, 651-655.
Powers, M. D. (2000). Children with Autism: A parents’ guide (2nd ed.).
Bethesda: Woodbine House.Wetherby, A. M., Woods, J., Allen, L., Cleary, J., Dickinson, H., & Lord, C.
(2004). Early indicators of autism spectrum disorders in the second year
of life. Journal of Autism and Developmental Disorders, 34, 473-493.
Learning Objectives Addressed:
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Importance of early screening and
surveillance.
Definition of Red Flags of autism spectrum
disorders.
Developmental screening tools.
Barriers preventing change in practice.
A model for improving screening practices.
Creation of an aim statement for changing
practice.
Development of next steps to initiate
practice change.
Closing Thoughts
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“If I could snap my fingers and be nonautistic, I would not. Autism is part of
what I am.”
-Temple Grandin
“Autism is not me. Autism is just an
information-processing problem that
controls who I appear to be. Autism
tries to stop me from being free to be
myself.”
-Donna Williams
Discussion/Questions