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Translating Evidence-based Developmental Screening into Pediatric Primary Care. James Guevara, MD, MPH Center for Pediatric Clinical Effectiveness Seminar Series October 3, 2008. Educational Aims. To review current knowledge of developmental problems and interventions in early childhood
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Translating Evidence-based Developmental Screening into Pediatric Primary Care James Guevara, MD, MPH Center for Pediatric Clinical Effectiveness Seminar Series October 3, 2008
Educational Aims • To review current knowledge of developmental problems and interventions in early childhood • To update participants on current screening recommendations • To understand barriers to implementation of developmental screening • To disseminate information on TEDS Study
Declarations • Current study is funded by a grant from CDC R18 DD000345 • No conflicts of interest to declare
Relevant Definitions • Developmental delay (DD): when a child does not meet developmental milestones within an expected period of time in one or more domains (motor, speech & language, social & behavioral, cognitive) • Presumptive Condition: health condition that is strongly associated with DD, presumptive eligibility for early intervention • At Risk Condition: health condition that is associated with DD, may require close monitoring
High Prevalence of DD • Prevalence estimated at 16.8% in U.S., @2% have severe disability • Strong association with certain medical and genetic conditions, eg. HIV or Down’s Syndrome • Greater prevalence among lower SES children
Risk Factors for Developmental Delay • Very Low birthweight or prematurity • Known genetic disorders or syndromes (presumptive conditions), eg. Down’s Syndrome • Known chronic medical conditions (presumptive conditions), eg. HIV • Family history of DD: eg. Autism in sibling • Psychosocial factors: eg. poverty, child abuse and neglect, failure to thrive, maternal depression, parent substance abuse, plumbism
Poor Prognosis for DD Boyle et al, Pediatrics 1994; 93:399-403
Treatment of DD: Parallel Tracks • Medical Management: ancillary services and multidisciplinary specialty services (diagnosis-specific) • Individuals with Disabilities Act (IDEA): federal mandate for EI (diagnosis-independent) • Part C (Birth to Three) • Part B (Early childhood special education) • 3-5 years old (in some states, the age is birth to 5)
Varying Eligibility for EI • States must provide services to: • Children experiencing developmental delays • Children with established presumptive conditions (eg, HIV, Down’s Syndrome) • States may provide services to: • Children at risk of experiencing a developmental delay (eg VLBW, prematurity, plumbism, abuse/neglect, parent SA) • Each state is required to establish a definition of eligibility for services for 5 developmental domains: • Motor • Communication • Cognitive • Daily living • Socio-emotional (Definitions of eligibility differ significantly from state to state)
Evidence for Effectiveness for EI? • EI has beneficial effects on cognitive functioning: greater school achievement, less grade retention, less use of special education • EI has beneficial effects on social functioning: lower teenage pregnancy, less delinquency • Only @30% of children with DD are detected before school entry
A: WASI (HLBW) B: PPVT-III (HLBW C: WJTA-Reading (HLBW) D: WJTA-Math (HLBW) E: WASI (LLBW) F: PPVT-III (LLBW) G: WJTA-Reading (LLBW) H: WJTA-Math (LLBW) McCormick et al, Pediatrics 2006; 117:771-80
Surveillance vs. Screening • Surveillance: ongoing process of recognizing children who may be at risk of DD • Screening: use of standardized tools to identify DD and refine risk • Evaluation: a complex assessment process of identifying specific developmental disorders and needs
AAP Policy Statement Pediatrics 2006; 118: 405-20
Summary of AAP Policy Statements • Surveillance at all well child visits • Developmental screening at the 9-, 18-, and 30-month visits • Autism screening at the 18- or 24-month visits • Developmental screening at any well child visit in which DD risk is identified • Referral for diagnostic evaluation and services for children who fail screen • Schedule early return visits for those at risk who pass screens
Screening Increases Referrals Hix-Small et al, Pediatrics 2007; 120:381-9
Barriers to Developmental Screening • Limited time and lack of reimbursement • Lack of knowledge and training in screening • Concerns about over-identification • Difficulty making referrals Pinto-Martin et al, AJPH 2005; 95:1928
North Carolina ABCD Project: effort to overcome screening barriers Earls et al, Pediatrics 2006; 118:e183-8
Knowledge Gaps • Unclear whether feasible to implement developmental screening in high risk urban population without statewide support • Unclear whether urban physicians and families accept developmental screening • Unclear whether screening results in increased identification of DD
Translating Evidence-based Developmental Screening (TEDS) Study • Randomized controlled trial of developmental screening in four urban pediatric practices • Assesses implementation of AAP policy statements on screening • Funded by CDC (PI Guevara) and Commonwealth Fund (PI Pati)
TEDS Study Aims • To identify barriers and facilitators to the use of standardized developmental screening in urban primary care practice. • To assess the feasibility of implementation of the AAP’s developmental screening policy compared with usual care • To determine the relative effectiveness of the AAP’s developmental screening policy compared with usual care
TEDS Study Design • Mixed methods design combining qualitative and quantitative components • Year 1: conduct focus groups with parents, clinicians, and office staff to identify barriers and facilitators to screening and map office workflow • Year 2-3: Randomized intervention with 3 arms: • Usual care (surveillance) • Developmental screening by SRS at 9, 18, 24, 30 months • Developmental screening by PCP at 9, 18, 24, 30 months
Focus Groups: Parents • Prioritize development • Recognition that screening is difficult due to competing demands • Preference for developmentally focused visits • Screening tools would be acceptable: • serve to stimulate conversation with pediatrician on development • identify developmental weaknesses in their child that could be targeted
Focus Groups: Pediatricians • Prioritize time management • Perception that parents prefer complete well child exams • Development important but preference for maintaining all elements of well child exam • Mixed receptivity to use of screening tools • Favorable if other office staff complete screens • Unfavorable if they have to take additional time to complete screens
Study Considerations • Allow PCPs to prioritize developmental domains and assist in selection of screening tools • Conduct provider training in use of screening tools • Map office flow procedures • Integrate developmental screening with usual well child care • Collaborate with EI provider to acquire referral outcomes
Ages and Stages Questionnaire (ASQ) Visits: 9, 18, and 30 month visits Accuracy: Sensitivity 0.75, specificity 0.86 Logistics:10-15 min, 30 questions, age-specific forms, EHR compatible Domains:general parent report of milestones Family:family-friendly, concrete, 4-6 grade literacy Training: teaches milestones Community: accepted by Childlink, supported by PA DPW
Modified Checklist for Autism in Toddlers (M-CHAT) Visits: 18 and 24 month visits Accuracy: sensitivity .85, specificity .93 Logistics: 23 questions yes/no, EHR compatible, 2 minutes Domains: autism only Family:easy to complete and score, only hard for families with some concern Training: intro to autism Community: screener used by Childlink
Provider Training Materials • Developed training video and educational materials for ASQ and MCHAT • Allowed for group or individual training at provider discretion • Provided CME credits for attendings • Incorporated resident training into overall residency curriculum “After a crumb or cheerio is dropped into a bottle, does your child purposely turn the bottle over to dump it out?”
Integration of Screening into Well Child Care • Facilitate recruitment with electronic prompt • Place screening tools (or at least scoring grids) into EHR with automated scoring • Assist PCPs and schedulers with identifying study participants and their allocation assignment in EHR • Dual schedule SRS with PCP • Generate screening reminder alerts for 9-, 18-, 24-, and 30-month intervention arm visits • Use of 96110 CPT code for provider RVUs
Collaboration with EI • Memorandum of agreement to share data and fax EI health appraisals/prescriptions • Monthly Tracking spreadsheet generated and maintained by each PCC and updated by Childlink • Agreement by Childlink to accept ASQ and MCHAT results as part of their intake
Study Procedures • Eligibility: all children ages 0-30 months without DD or presumptive conditions or prematurity • 2100 eligible children recruited across all PCC sites using EPIC prompts at visits or by direct referral from PCPs to SRS • Families consented and followed for 18 months by RA and SRS • Randomization will occur following consent visit
Study Outcomes • % identified with DD • % with DD referred to EI • % referred who complete MDE • Rates of eligibility for EI services (IFSP): eligible vs. ineligible (discharged or at risk) • Family satisfaction with screening/surveillance process
Conclusions • Developmental delays are prevalent in urban high risk populations • Use of validated screening tools can increase the identification of developmental delay • Barriers exist to the implementation of developmental screening tools • Decisions regarding developmental screening tools involve tradeoffs
Conclusions • Important to address provider buy-in and facilitate their participation • Map office flow to ensure smooth operation of procedures • Integrate developmental screening into current practices • To be most effective, developmental screening requires collaboration with early intervention programs
TEDS Study Personnel • Jim Guevara, MD, MPH • Marsha Gerdes, PhD • Susmita Pati, MD, MPH • Jennifer Pinto-Martin, PhD • Russ Localio, PhD • 4 SRS--Lynnette DeShields, Lara Kyriakou, Sofia Baglivo, Casey Morris • Ankur Rustgi and Jane Cavenaugh, RA • Trude Haecker, MD • Beth Rezet, MD • Nate Blum, MD
Role of Developmental Screening • Pediatricians under-identify DD in their patients • Pediatricians are better at identifying DD in patients with phenotypic features or certain domains of development • Developmental screening tools can enhance the rate of identification but require additional time to administer and score • Only 23% of pediatricians nationwide routinely use developmental screening instruments
Philadelphia County EI • Referrals made to Childlink (PHMC) birth to 34 months or Elwyn Inc 34 months to 60 months • Initial phone assessment: demographics and ASQ • In home (alternatively at Childlink) visits: completion of MDE within 45 days of assessment • MDE outcome: eligible (25% delay in one or more areas) with development of IFSP vs. ineligible • Ineligible: discharged or placed in at risk program with follow-up Q2 months