Screening%20and%20Surveillance%20of%20Autism%20and%20Related%20Disabilities

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Screening and Surveillance of Autism and Related
Disabilities
How to Change Ones Clinical Practice

Statewide Autism System of Care Funded by Florida
Developmental Disabilities Council Health-Care
Task Force
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• One of the doctors we took Gary to told us, Well
  if hes autistic he could just snap out of it ,
  like amnesia. I thought to myself, Dont hold
  your breath.

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Learning Objectives

• 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.

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Part 1 Autism Spectrum DisordersImportance of
Early Screening
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Autism Spectrum Disorders

• Social-communicative disorder
• Triad of impairments
• Socialization
• Verbal and nonverbal communication
• Restricted and repetitive patterns of behaviors
• Unknown etiology, but with strong genetic basis

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What are the Red Flags?

• 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
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Absolute Indications for Immediate Evaluation

• 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

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Are We Missing The Boat?

• 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).

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Early ScreeningWhy?

• Intensive early intervention before age 3 results
  in greater impact after age 5 (Wetherby et al.,
  2004).
• 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

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General Developmental Screeners

• Recommended General Screening Tools
• 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)

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Autism Specific Screeners

• 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)

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Parents Evaluation of Developmental Status
(PEDS)

• 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

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Ages and Stages Questionnaire (ASQ)

• 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

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Easy Road from Screening to Dx

• AAP recommends using a general developmental
  screening tool at all well-child visits
• 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

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Perceived Barriers

• What prevents healthcare providers from changing
  their practice?
• Lack of information
• Lack of time
• Lack of sufficient money/resources
• Lack of necessary staff
• _________________ (fill in the blank)

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Concrete Barriers

• 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

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Part 2Changing Clinical Practices
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• 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)
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An Effective Aim Statement is

• 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)
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An Effective Aim statement is

• Focused. The aim is defined so that the work is
  not overwhelming or discouraging, but simplifies
  the demands on ones 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)
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Aim Statement Example

• To use PEDS or ASQ with 25 of children up to 18
  months of age within 3 months of initiation
• 50 by 6 months
• 75 by 9 months
• 100 by 12 months

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Group Activity- 5 Minutes

• Develop an Aim Statement for using a general
  developmental screening tool in your practice.

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PDSA Cycles
Copied from Education in Quality Improvement for
Pediatric Practice (www.eqipp.org)
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Measurement and Data Collection

• Key principles of measurement and data collection
• 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)
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Ways to Approach Barriers

• Step One Know Your Patient Flow
• 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)
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Ways to Approach Barriers

• Step Two Choose Screening Instrument
• 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.

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Ways to Approach Barriers

• Step Three Flagging Charts
• Consider
• Color-coding charts
• Sticker system
• Electronic medical reporting
• Consider starting an ASD registry

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Ways to Approach Barriers

• Step Four Improved Documentation
• 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).

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Ways to Approach Barriers

• Step Five Finding Support Staff
• 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
• Think care coordination as in the medical home
  concept.
• Involve key staff in important brain-storming/idea
  forming sessions.

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Example of Change in Practice to Increase Early
Screening

• 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 physicians arrival.

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Example of Change in Practice to Increase Early
Screening

• 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.

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Activity- 10 Minutes

• Develop action plan step(s) for changing YOUR
  practice to increase the use of general
  developmental screener(s)

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Tips for Success

• 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)
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Resources

• 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 Childrens Healthcare
  Quality
• www.nichq.org
• Agency for Healthcare Research and Quality
• www.ahrq.gov

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Resources

• American Academy of Pediatrics (2001). The
  pediatricians 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.

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Learning Objectives Addressed

• 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.

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Closing Thoughts

• If I could snap my fingers and be non-autistic,
  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

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Discussion/Questions