Screening and BEYOND
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1 Screening and BEYOND EMOTIONAL, BEHAVIORAL AND DEVELOPMENTAL SCREENING AND SURVEILANCE August 19, 2014 Paul H. Lipkin, M.D. Director, Interactive Autism Network, Kennedy Krieger Institute Associate Professor of Pediatrics, Johns Hopkins Medicine Virginia Keane, M.D. Staff Physician, Primary Care for Children with Special Health Care Needs Mount Washington Pediatric Hospital
2 WELCOME! Your lines are UNMUTED as you are joining the meeting Please, either mute yourselves (*6) or keep the background noise to the minimum Please, turn off the sound on your computer Please, do NOT put the call on hold Thank you!
3 CME Accreditation LifeBridge Health is accredited by MedChi, the Maryland State Medical Society to provide continuing medical education for physicians. LifeBridge Health designates this live or recorded educational activity for a maximum of 15 AMA PRA Category 1 Credits TM. Physicians should only claim credit commensurate with the extent of their participation in the activity.
4 Financial Disclosures Deborah Badawi, MD, program planner and speaker has no financial interest or affiliation with the manufacturer or distributor of any medical products, devices or services and does not intend to discuss the use of off-label products or devices. The speakers Paul Lipkin, M.D. and Virginia Keane, M.D. have no financial interest or affiliation with the manufacturer or distributor of any medical products, devices or services, nor do they intend to discuss the use of off-label products or devices.
5 Objectives Providers will be able to name evidence regarding early screening and primary care. Providers will review the AAP policy for developmental and autism screening and reflect on their level of compliance with the policy.
6 Early Identification of Developmental and Behavioral Disorders Paul H. Lipkin, M.D. 6
7 Children with special health care needs (2009/10): US vs. MD ( 7
8 CSHCN and Autism Spectrum Disorders (ASD; 2009/2010): US vs. MD 8
9 Prevalence of Autism Spectrum Disorders United States, 2010 (MMWR 2014) 9 11 ADDM sites age 8 yrs Prevalence 14.7/1,000 (1:68) per 1,000 1 in 42 boys 1 in 189 girls Increase of 29% from 2010; 64% from 2006; 123% from 2002
10 10 ASD Age of Diagnosis (CDC 2012) Median earliest age ASD documented 4 years, 6 months Subtype Autistic Disorder 4 years, 0 months ASD/PDD 4 years, 5 months Asperger Disorder 6 years, 3 months
11 11 Autism - Age of Diagnosis (NSCSHCN 2009/2010): US
12 Developmental Screening: Why Early Identification? Improved developmental, social, educational outcome? Rights of Persons with Disabilities Individuals with Disabilities Education Act (IDEA): Early Intervention, Special Education Americans with Disabilities Act Family and Social Support New Genetic Diagnostic Testing E.g. Chromosome Microarray, Fragile X New Medical and Surgical Treatments E.g. Botulinum toxin, intrathecal baclofen, enzyme replacement New Therapeutic Modalities E.g. Applied Behavioral Analysis (ABA) 12
13 13 Hearing Impairment: Benefits of Early ID Yoshinaga-Itano, et al., 1996 Language abilities measured by parent report using the Minnesota Child Development Inventory (expressive and comprehension scales) and the MacArthur Communicative Developmental Inventories (vocabulary).
14 Early Start Denver Model 14 Mean scores on the MSEL and the VABS composite for children in the ESDM and A/M groups 1 and 2 years after entering study Mullen Scales of Early Learning Vineland Adaptive Behavior Scales RCT, n=48, 2 year duration Dawson, G. et al. Pediatrics 2010;125:e17-e23
15 Consensus Statement: The International Standard Cytogenomic Array (ISCA) Consortium DT Miller, et. al. AJHG studies; 21,698 patients with unexplained DD/ID, ASD, or MCA G-banded karyotype yield ~ 3% (excluding Down syndrome, other recognizable syndromes) CMA yield 15%-20% higher sensitivity for submicroscopic deletions and duplications Balanced rearrangements and low-level mosaicism not detectable by arrays (<1% in this population) Available evidence strongly supports the use of CMA in place of G-banded karyotyping as the first-tier cytogenetic diagnostic test for patients with DD/ID, ASD, or MCA. G-banded karyotype analysis should be reserved for patients with obvious chromosomal syndromes (e.g., Down syndrome), a family history of chromosomal rearrangement, or a history of multiple miscarriages. 15
16 16 Duchenne/Becker Muscular Dystrophy X linked- Xp21. Duchenne- complete absence of dystrophin; Becker- partial absence 1 of 3 new mutations Often first identified via elevated transaminases Common signs and symptoms Proximal muscle weakness (Gower) Calf pseudohypertrophy Developmental Delays Treatment Steroids prolong walking Scoliosis repair can preserve pulmonary function Assisted ventilation, Cardiac regimen prolongs longevity (18->30s)
17 17 Mean Age First Signs or Symptoms Noted First reported to PCP First Creatine Kinase Sent Definitive Diagnosis of Duchenne 2.5 years 3.6 years 4.7 years 4.9 years 156 boys without a family history of Duchenne (J Pediatr. 2009)
18 Constraint-Induced Movement Therapy Mean ± SEM time to complete 6 timed tasks at each testing session. 18 Gordon A M et al. Pediatrics 2006;117:e363-e by American Academy of Pediatrics
19 Developmental Screening Guidelines 2014 General Pediatric Population AAP Developmental Surveillance and Screening (2006) Screening for Motor Disorders (2013) Aimed at CP, MD Revision pending 2014 Added screening at 48 months? Screening in Child Care Settings HHS Administration on Children and Families Early Hearing Detection AAP Autism Spectrum Disorders Screening (2007) Merger with DSS planned in 2014 revision AAP Mental Health/Behavioral Screening pending 19
20 Identifying Infants and Young Children with Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screening (American Academy of Pediatrics 2006) Perform developmental surveillance at every well-child visit Perform developmental screening using a standardized screening tool at 9, 18, or 30* months or when concern is expressed Perform Autism-specific screening at 18 (and 24) months If screening results are concerning, refer to developmental and medical evaluations and early intervention services Follow up on referrals made and continually track child s developmental status 20
21 21 Motor Delays: Early Identification and Evaluation Pediatrics June 2013
22 22 Motor Screening: The History and Neurologic Examination Focus on tone and lab testing Neuroimaging CK TSH
23 Developmental Screening Guidelines 2014 General Pediatric Population AAP Developmental Surveillance and Screening (2006) Screening for Motor Disorders (2013) Aimed at CP, MD Revision pending 2014 Added screening at 48 months? Screening in Child Care Settings? HHS Administration on Children and Families Early Hearing Detection AAP Autism Spectrum Disorders Screening (2007) Merger with DSS planned in 2014 revision AAP Mental Health/Behavioral Screening pending Special Populations (High-Risk) 23 Congenital Heart Disease (2012) AHA/AAP None! Preterm Infants Other High-Risk Newborns Fetal Alcohol Sickle Cell
24 Prevalence of neurodevelopmental impairment in the population with congenital heart disease (CHD). 24 Marino B S et al. Circulation 2012;126: Copyright American Heart Association
25 25 Congenital heart disease (CHD) algorithm for surveillance, screening, evaluation, and management of developmental disorders and disabilities Marino B S et al. Circulation 2012;126:
26 26 Developmental Screening in CHD: Risk Stratification Marino B S et al. Circulation 2012;126:
27 27 Neurodevelopmental Follow-up of CHD Model for Monitoring of Children with Special Health Care Needs and Chronic Health Conditions? Principles of CHD Guidelines Risk Stratification Low Risk DSS Guidelines High Risk
28 28 Schema for the High-Risk Child 1. Referral for Early Intervention Services 2. Formal Medical Evaluation Genetics Neuroimaging 3. Formal Neurodevelopmental Evaluation Standardized testing to identify specific developmental disorder(s) Age-specific All children with confirmed ND disability 1. Ongoing therapeutic and educational services 2. Medical Home program of ongoing ND surveillance & periodic re-evaluation Identical approach in low-risk child with screening concerns
29 DEVELOPMENTAL SCREENING: GETTING STARTED Virginia Keane, MD Mount Washington Pediatric Hospital Primary Care for Children with Special Health Care Needs
30 Questions to Consider Why: Dr Lipkin covered this What: what tool will you choose? Who: who in your setting will be responsible? Where? Where will screening occur, where will you keep the results? When? Before, during or after a visit? How? How will you get started, how will you bill?
31 What? What screening tool will you choose?
32 Some Issues to Consider in Selecting a Tool Psychometrics: sensitivity/specificity Time/staffing required Cost and reimbursement Parent-completed versus directly administered Cultural and linguistic sensitivity
33 Approved General Developmental Screening Tools for Maryland EPSDT Ages and Stages Questionnaire (ASQ) Parents Evaluation of Developmental Status (PEDS) +/- PEDS: DM Battelle Developmental Inventory Screening Tool, 2nd edition Brigance Screens-II Early Screening Inventory Revised FirstSTEP Preschool Screening Tool
34 Parent-Completed Screens: Advantages As accurate as screens using other measurement methods Take less physician/staff time (which may translate into less cost) Don t depend upon cooperation of child during office visit Bring parents more fully into screening process
35 Consider Cultural and Linguistic Issues Parent literacy: reading level of parent-completed tools Language: availability of tool in languages represented in your population because translations may not be valid Who cares for the child and has the most knowledge of his/her ability?
36 Screening Tool Comparison: ASQ vs. PEDS, parent completed screens Instrument Description Cost Admin Time Psychometrics Literacy/ Language issues ASQ Use 4-60 months 19 agebased forms 30 items per age $199 per language Unlimited copies Paper or on disc minutes parent Sens: (mod-high) Spec: (mod-high) 5 th grade level English, Spanish, French, and Korean PEDS Use 0-8 years Single response form for all ages 10 items $30 per 50 survey forms :60 cents each and$70 manual 2-10 minutes parent Sens: (moderate) Spec: (moderate) 5 th grade level English, Spanish, French, Chinese, Arabic, Somali, etc
37 Autism Screening Several tools are available but the one that is time and finance feasible is the MCHAT. MCHAT is in the public domain: download the tool and scoring guide from the internet Parent completes the questionnaire It needs to be scored, results and action recorded.
38 When? Before the visit, at home: how will you get the tool to family, who will remind them to complete it, bring it in. During the visit? Every visit? Give parents online access so they can do it whenever they want, contact you with concerns
39 Who? Who will do each of these tasks? Make sure the screening tools are available Give the screens to the parent Collect the screen from the parent Score the tool Share result with parent Record the results
40 Who? Who will do each of these tasks? Make sure the screening tools are available: clerk Give the screens to the parent: clerk/ma/nurse Collect the screen from the parent: clerk/ma/nurse Score the tool? Clerk/ma/nurse Share result with parent? Clerk/ma/nurse/doc Record the results? Ma/nurse, but provider should document the plan In non medical settings anyone can perform this screening
41 Where? Where will parents complete the screening? Home? Gives parents the chance to observe their child while completing the tool Office: waiting room? exam room? Where will you record and store the results? Paper chart? Electronic record : you can create templates to record details or just the final result: all EPSDT wants is a summary statement such as : asq performed, passed, routine anticipatory guidance or PEDS performed, failed, referred to infants and toddlers
42 How To Get Started Involve your staff: Developmental screening takes lots of steps, and many staff members, so it helps to involve them in the implementation. Teach your staff why screening is important: They will be much more likely to follow through if they understand. Get their ideas on who,when, where and how to get this important work done in your setting. Measure your completion rates, tweak your process as needed, use quality improvement.
43 How to deal with results? An action should be taken for failed and at risk results. This can be a plan to rescreen, guidance on how to stimulate development, or referral to early intervention, developmental specialist, and/or medical specialists. Referrals should be tracked This will be covered in detail in a later webinar.
44 How? How to Bill Use code 96110, developmental screening to bill for use of the PEDS or the ASQ. You must keep documentation of the tool used, the result, and the plan You can bill for 2 units of per visit, so if you perform the MCHAT for autism screening at the same visit you can bill for both.
45 Questions?
46 What s next? Follow-up Presentation slides Link to the webinar recording Link to a short evaluation Evaluation for this session closes on Wednesday October 1, 2014 No credit will be granted without completion of the evaluation August Quality Improvement Call Wednesday August 27, 2014 (12:15pm to 1:15 pm)
47 Thank You!
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