Screening and Surveillance of Autism and Related Disabilities

How to Change One’s Clinical PracticeHow to Change One’s Clinical Practice

Statewide Autism System of CareFunded by Florida Developmental

Disabilities CouncilHealth-Care Task Force

Powers, M., 2000

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.”

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.

Part 1: Autism Spectrum Disorders:Importance of Early Screening

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

Weatherby et al., 2004

What are the Red Flags?1. Inappropriate gaze2. Lack of sharing enjoyment or interest3. Little or no response to name when called4. Lack of coordinated facial expression, gesture,

and sound5. Lack of showing6. Unusual intonation and/or pitch of voice7. Repetitive movements of posturing of body,

arms, hands, or fingers8. Repetitive movements with objects

Wetherby et al., 2004

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

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).

Early Screening:Why?

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

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)

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)

Parent’s 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

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

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

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)

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

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: 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: 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: 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

Group Activity- 5 Minutes 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 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)

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)

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.

Ways to Approach Barriers Step Three: “Flagging Charts”

Consider: Color-coding charts Sticker system Electronic medical reporting

Consider starting an ASD registry

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).

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.

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 physician’s arrival.

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.

Activity- 10 Minutes Develop action plan step(s) for

changing YOUR practice to increase the use of general developmental screener(s):

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)

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 Children’s Healthcare Quality

www.nichq.org Agency for Healthcare Research and Quality

www.ahrq.gov

Resources 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: 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.

“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

Closing Thoughts

Discussion/Questions