Judith Miller - Can we do more than refer? Increasing community providers’ ability to diagnose...
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Methods Background Objectives Sample Items Next Steps To develop a freely available diagnostic tool that: • Supports the assessment and diagnosis of “classic” or autism by non-specialist providers • Spans the full range of age, verbal ability, and functional skills • May be integrated with clinical decision support tools and the electronic health record • Is designed with implementation in mind at the outset, using stakeholder input from target users, , parents, and community agencies. Over the past 20 years non-specialist providers are more familiar with Autism Spectrum Disorder (ASD). However, few tools exist to move beyond screening, and many providers still refer to an ASD specialist for the final diagnostic call. With the right support, non-specialist providers could make a diagnosis of ASD in children whose presentation is quite apparent, or “classic,“ and specialists would best be used for cases whose presentation is complex. • Validation studies to determine frequency of false positive diagnoses. • Feedback from community providers about the report and whether it would meet the needs for service eligibility. Interdisciplinary input on both clinical and implementation factors was gathered. The team consisted of: ASD specialists (diagnostic and/or intervention): • Developmental and Behavioral Pediatrics (n=2) • Psychology (n=4) • Psychiatry (n=1) • Neurology (n=1) • Speech and Language Pathology (n=1) • Occupational Therapy (n=1) Non-specialists: • General pediatricians (n=3) • Neurology (n=1) • CHOP Autism Family Advisory Board (n=4) Implementation suggestions indicated the tool should: • Fit into 30 minutes (as a follow-up appointment slot in general pediatrics, or for inclusion in a 1-2 hour appointment for neurology, psychiatry, or psychology). • Include concrete scripts for the provider to introduce the tool, ask the questions, and provide the results. • Include next step directions for the family, with local resource information for community services. • Provide an official report with diagnosis that would be recognized by school and community providers. Clinical suggestions indicated the tool should: • Be used after a concern has been raised (through screening, parent concern, or provider concern. • Support either a confident diagnosis or a referral for evaluation, but not to rule out an ASD. • Focus on specificity rather than sensitivity. Can we do more than refer? Increasing community providers’ ability to diagnose “classic” Autism Spectrum Disorder Judith Miller, PhD 1,2 , Maura Powell, MPH 1 , Brenna Maddox, PhD 1 & Susan E Levy, MD, MPH 1,2 . 1 The Children's Hospital of Philadelphia, Philadelphia, PA; 2 Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA Why a New Tool is Needed Limitations of current screening tools (M-CHAT, SCQ, SRS): • Focus is on sensitivity, not specificity • Items on restricted and repetitive behaviors are sparse • Gaps in coverage (particularly age 30-48 month) • Not all are freely available Limitations of current “gold standard” measures (ADOS, ADI-R, CARS): • Not practical for the non-specialist provider • No single tool incorporates both history and observation • Limited coverage of restricted and repetitive behaviors Support for this project came from the Children’s Hospital of Philadelphia Office of Clinical Quality Improvement. Acknowledgements: Leadership Education in Neurodevelopmental Disorders (LEND) Autism faculty and the CHOP Autism Integrated Care Program. References available upon request. Sample of 3-6 year old items (those in bold are highly specific to ASD): Check if observed during visit Does the child… …have impaired eye contact? No/Rarely Sometimes Yes/Often Observed …use gestures? (e.g., pointing, high-5s, waving, clapping, motioning “come here”) No/Rarely Sometimes Yes/Often Observed …express a range of emotions (e.g., surprise, embarrassment, disappointment) with face, body, and tone of voice all together? No/Rarely Sometimes Yes/Often Observed …actively avoid eye contact, even when comfortable? No/Rarely Sometimes Yes/Often Observed Nonverbal Communication (Must show at least some impairment) Check if observed during visit Does the child… …have difficulty with transitions? No/Rarely Sometimes Yes/Often Observed …have compulsive behaviors? (e.g., has to lick food before taking a bite) No/Rarely Sometimes Yes/Often Observed …seem to need routines/structure more than other children? No/Rarely Sometimes Yes/Often Observed …show extreme resistance to change? (e.g., to new routines, driving routes, or furniture arrangements) No/Rarely Sometimes Yes/Often Observed …say one or more things in a very specific way, or insist that others say things in a very specific way? No/Rarely Sometimes Yes/Often Observed Routines (May show some impairment) Recommendation: Diagnosis of ASD. All of the following have been met: • Full DSM-5 criteria are endorsed by parent; and • There is clear evidence of at least one bolded behavior; and • At least some behaviors have been clearly observed by the clinician: “Reviewing this information today, it does appear that your child meets criteria for Autism Spectrum Disorder. Here is a list of the criteria and the behaviors your child is exhibiting. As you can see, all three of the Social Communication criteria are met, and at least two of the Restricted or Repetitive Behaviors are met. In addition, there is at least one behavior that is very highly indicative of ASD (bolded). And finally, there were at least some behaviors apparent here in the office, further suggesting that we can be confident in making the diagnosis today.” Recommendation: Refer for a diagnostic specialty evaluation. Rationale for referral: One of the above criteria were not met. For example: • Partial criteria (2 or more symptom domains, but not full criteria) were endorsed by parent and/or observed by clinician; or • Parent endorsed full criteria, but either there are no bolded behaviors, and/or very little evidence of atypical behaviors was observed by the clinician. Or, • Parent or clinician feel this information is not yet sufficient to make a diagnosis with confidence. “These results suggest that a diagnostic specialty evaluation would be helpful. Your child is showing some behaviors suggestive of ASD, but not clearly enough that we can confident in a diagnosis based on this relatively brief evaluation alone.” Additional recommendations regardless of the assessment outcome: “Regardless of the outcome from this evaluation, it is still important to address any additional developmental concerns, whether they may be related to ASD or not. Help is available from the community (EI or School district, depending on age) and through private providers (therapists and health care providers).” Sample from script:
description
We describe a tool to assist community providers (pediatricians, psychologists, neurologists, psychiatrists) in diagnosing children whose Autism Spectrum Disorder (ASD) characteristics are quite apparent (or "frank"). If successful, this tool may reduce average age of diagnosis, and reserve ASD-diagnostic specialty evaluations for children whose presentation is very subtle or complex.
Transcript of Judith Miller - Can we do more than refer? Increasing community providers’ ability to diagnose...
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Methods Background
Objectives
Sample Items
Next Steps
To develop a freely available diagnostic tool that:
Supports the assessment and diagnosis of classic or autism by non-specialist providers
Spans the full range of age, verbal ability, and functional skills
May be integrated with clinical decision support tools and the electronic health record
Is designed with implementation in mind at the outset, using stakeholder input from target users, ,
parents, and community agencies.
Over the past 20 years non-specialist providers are more
familiar with Autism Spectrum Disorder (ASD). However,
few tools exist to move beyond screening, and many
providers still refer to an ASD specialist for the final
diagnostic call. With the right support, non-specialist
providers could make a diagnosis of ASD in children whose
presentation is quite apparent, or classic, and specialists would best be used for cases whose presentation is
complex.
Validation studies to determine frequency of false positive diagnoses.
Feedback from community providers about the report and whether it would meet the needs for service eligibility.
Interdisciplinary input on both clinical and
implementation factors was gathered.
The team consisted of:
ASD specialists (diagnostic and/or intervention):
Developmental and Behavioral Pediatrics (n=2) Psychology (n=4) Psychiatry (n=1) Neurology (n=1) Speech and Language Pathology (n=1) Occupational Therapy (n=1)
Non-specialists:
General pediatricians (n=3) Neurology (n=1) CHOP Autism Family Advisory Board (n=4)
Implementation suggestions indicated the tool should:
Fit into 30 minutes (as a follow-up appointment slot in general pediatrics, or for inclusion in a 1-2 hour
appointment for neurology, psychiatry, or psychology).
Include concrete scripts for the provider to introduce the tool, ask the questions, and provide the results.
Include next step directions for the family, with local resource information for community services.
Provide an official report with diagnosis that would be recognized by school and community providers.
Clinical suggestions indicated the tool should:
Be used after a concern has been raised (through screening, parent concern, or provider concern.
Support either a confident diagnosis or a referral for evaluation, but not to rule out an ASD.
Focus on specificity rather than sensitivity.
Can we do more than refer?
Increasing community providers ability to diagnose classic Autism Spectrum Disorder
Judith Miller, PhD1,2, Maura Powell, MPH1, Brenna Maddox, PhD1 & Susan E Levy, MD, MPH1,2. 1The Children's Hospital of Philadelphia, Philadelphia, PA; 2Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA
Why a New Tool is Needed Limitations of current screening tools (M-CHAT, SCQ, SRS):
Focus is on sensitivity, not specificity Items on restricted and repetitive behaviors are sparse Gaps in coverage (particularly age 30-48 month) Not all are freely available Limitations of current gold standard measures (ADOS, ADI-R, CARS):
Not practical for the non-specialist provider No single tool incorporates both history and observation Limited coverage of restricted and repetitive behaviors
Support for this project came from the Childrens Hospital of Philadelphia Office of Clinical Quality Improvement.
Acknowledgements: Leadership Education in Neurodevelopmental Disorders
(LEND) Autism faculty and the CHOP Autism Integrated Care Program.
References available upon request.
Sample of 3-6 year old items
(those in bold are highly specific to ASD):
Check if observed during visit
Does the child have impaired eye contact?
No/Rarely Sometimes Yes/Often Observed
use gestures? (e.g., pointing, high-5s, waving, clapping, motioning come here) No/Rarely Sometimes Yes/Often Observed express a range of emotions (e.g., surprise, embarrassment, disappointment) with face, body, and tone of voice all together?
No/Rarely Sometimes Yes/Often Observed
actively avoid eye contact, even when comfortable? No/Rarely Sometimes Yes/Often Observed
Nonverbal Communication (Must show at least some impairment)
Check if observed during visit
Does the child have difficulty with transitions? No/Rarely Sometimes Yes/Often Observed have compulsive behaviors? (e.g., has to lick food before taking a bite) No/Rarely Sometimes Yes/Often Observed seem to need routines/structure more than other children? No/Rarely Sometimes Yes/Often Observed show extreme resistance to change? (e.g., to new routines, driving routes, or furniture arrangements)
No/Rarely Sometimes Yes/Often Observed
say one or more things in a very specific way, or insist that others say things in a very specific way?
No/Rarely Sometimes Yes/Often Observed
Routines (May show some impairment)
Recommendation: Diagnosis of ASD. All of the following have been met: Full DSM-5 criteria are endorsed by parent; and There is clear evidence of at least one bolded behavior; and At least some behaviors have been clearly observed by the clinician: Reviewing this information today, it does appear that your child meets criteria for Autism Spectrum Disorder. Here is a list of the criteria and the behaviors your child is exhibiting. As you can see, all three of the Social Communication criteria are met, and at least two of the Restricted or Repetitive Behaviors are met. In addition, there is at least one behavior that is very highly indicative of ASD (bolded). And finally, there were at least some behaviors apparent here in the office, further suggesting that we can be confident in making the diagnosis today. Recommendation: Refer for a diagnostic specialty evaluation. Rationale for referral: One of the above criteria were not met. For example: Partial criteria (2 or more symptom domains, but not full criteria) were endorsed by parent and/or observed by clinician; or Parent endorsed full criteria, but either there are no bolded behaviors, and/or very little evidence of atypical behaviors was observed by the clinician. Or, Parent or clinician feel this information is not yet sufficient to make a diagnosis with confidence. These results suggest that a diagnostic specialty evaluation would be helpful. Your child is showing some behaviors suggestive of ASD, but not clearly enough that we can confident in a diagnosis based on this relatively brief evaluation alone. Additional recommendations regardless of the assessment outcome: Regardless of the outcome from this evaluation, it is still important to address any additional developmental concerns, whether they may be related to ASD or not. Help is available from the community (EI or School district, depending on age) and through private providers (therapists and health care providers).
Sample from script:
