Translating Evidence-based Developmental Screening into Pediatric Primary Care

1. Translating Evidence-based Developmental Screening into Pediatric Primary Care James Guevara, MD, MPH Center for Pediatric Clinical Effectiveness Seminar Series October 3, 2008

2. 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

3. Declarations • Current study is funded by a grant from CDC R18 DD000345 • No conflicts of interest to declare

4. 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

5. 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

6. 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

7. Poor Prognosis for DD Boyle et al, Pediatrics 1994; 93:399-403

8. 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)

9. 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)

10. 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

11. 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

12. 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

13. AAP Policy Statement Pediatrics 2006; 118: 405-20

14. 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

15. Screening Increases Referrals Hix-Small et al, Pediatrics 2007; 120:381-9

16. 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

17. North Carolina ABCD Project: effort to overcome screening barriers Earls et al, Pediatrics 2006; 118:e183-8

18. 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

19. 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)

20. 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

21. Framework:Theory of Planned Behavior

22. 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

23. 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

24. 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

25. 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

26. Selection of Screening Tools

27. 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

28. 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

29. 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?”

30. Office Flow Procedures

31. 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

32. Electronic recruitment prompt

33. 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

34. Childlink Referral Spreadsheet

35. 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

36. 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

37. 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

38. 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

39. 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

40. 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

41. 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