Early Detection of Developmental and Behavioral Problems in Primary Care

1. Early Detection of Developmental and Behavioral Problems in Primary Care Frances Page Glascoe Adjunct Professor of Pediatrics Vanderbilt University

2. Medicaid EPSDT requires screening for developmental and mental health status AAP recommends routine standardized developmental and behavioral screening IDEA requires child-find in every state

3. JAMA. 1990;263:3035-3042 Early Intervention Efficacy Pediatric Care Intervention Arkansas 85 99 Einstein 74 85 Harvard 96 97 Miami 66 81 U of PA 92 95 Texas 80 87 Washington 92 100 Yale 91 103 TOTAL 85 94

4. Early Intervention Benefits: Rationale For Screening Family interest in participation Better outcomes for participants: Higher graduation rates, reduced teen pregnancy, higher employment rates, decreased criminality and violent crime $30,000 to >$100,000 benefit to society (1992 $$s) For every 1$ spent on EI, society saves 13$

5. Detection rates without screening tests only 30% of children with developmental disabilities identified before K (Palfrey et al. J PEDS. 1994;111:651-655) only 20% of children with mental health problems identified (Lavigne et al. Pediatr. 1993;91:649 - 655)

6. Why Are Detection Rates So Low? Challenge #1: CHECKLISTS

7. Sample Checklist Uses hungry, tired, thirsty Climbs stairs without holding on Stacks 12 blocks Knows colors Dresses self completely Plays games with rules

8. Why Are Detection Rates So Low? Challenge #2: COMMUNICATING WITH FAMILIES

9. “Your teacher wishes me to delineate those watershed occasions in your life that have led you to become,slowly and inexorably,a loose cannon.”

10. Why Are Detection Rates So Low? Challenge #3: CLINICAL JUDGMENT

15. Why Are Detection Rates So Low? Challenge #4: DEVELOPMENT ITSELF

17. Effects of Psychosocial Risk Factors on Intelligence Percentiles 84th 75th 50th IQ 25th 16th RISKS: < HS, > 3 children, stressful events, single parent, parental mental health problems, < responsive parenting, poverty, minority status, limited social support

18. Parents often need training, and social services. Children need enrichment tutoring, mentoring, mental health, etc. Parents often need advice about behavior TYPICAL DEVELOPMENT minimal psychosocial risk factors BELOW AVERAGE DEVELOPMENT frequent psychosocial risk factors Children need special education, speech-therapy, etc. DISABLED some psychosocial risk factors and/or organicity

20. Why Are Detection Rates So Low? Challenge #5: DEALING WITH THE RESULTS OF A SCREENING TEST

21. REFERRAL CHALLENGES • 50% - 80% of children who fail screens are not referred (Rushton et al, APAM, 2002) • > 80% of referrals from primary care providers made only to familiar services (Glade, Forrest et al Amb Peds, 2002) • Nonmedical providers may not respond like the ideal subspecialist (Forrest et al APAM, 1999)

22. Why Are Detection Rates So Low? Challenge #6: FAILURE TO USE A HIGH QUALITY SCREENING TEST

23. Screening sorts those who probably have problems from those who probably don’t

24. Standards for screening tests Standardized on a national samploe Proof of reliability Evidence of validity Accuracy, i.e.: Sensitivity of 70% to 80% Specificity of 70% to 80%

25. Standards for screening tests Accuracy of the Denver-II Developmental DX NO YES PASS 86 69 8 Denver-II FAIL 27 17 10 86 18 Sensitivity = 10/18 = 56% Specificity = 69/86 = 80%

26. Detection rates WITH Screening Tests 70% to 80% of children with developmental disabilities correctly identified Squiresetal, JDBP. 1996;17:420 - 427 80% to 90% of children with mental health problemscorrectlyidentified Sturner, JDBP .1991; 12: 51-64 Most over-referrals on standardized screens are children with below average development and psychosocial risk factors Glascoe, APAM. 2001;155:54-59. -

27. Reasons for limited use of screening tests at well visits: COMMON MYTHS common screening tests too long many difficult to administer children uncooperative reimbursement and time limited referral resources unfamiliar or seemly unavailable challenges of giving difficult news

28. “Looking Good”

29. So what should we do? Use newer, brief, accurate tools Make use of information from parents

30. Can parents be counted upon to give accurate and good quality information? YES! Screens using parent report are as accurate as those using other measurement methods Tests correct for the tendency of some parents to over-report Tests correct for the tendency of some parents to under-report.

31. Can parents read well enough to fill out screens? Usually! But first ask, “Would you like to complete this on your own or have someone go through it with you?” Also, double check screens for completion and contradictions

32. Three Quality Parent Report Screens Parents’ Evaluation of Developmental Status (PEDS) 0 to 8 years At this point we are going to talk about three brief parent-based screening tools Ages and Stages (0 to 6 years) Modified Checklist of Autism in Toddlers (M-CHAT) 18 mos to 4 yrs.

33. PARENTS’ EVALUATION OF DEVELOPMENTAL STATUS PEDS A Method for Detecting and Addressing Developmental and Behavioral Problems • For children 0 to 8 years • In English, Spanish, Vietnamese, Somali, Chinese, and many other languages • Takes about 5 minutes for parents to complete • Takes 2 minutes to score • Elicits parents’ concerns • Uses same 10 questions at each visit • Sorts children into high, moderate or low risk for developmental and behavioral problems • 4th – 5th grade reading level so > 90% can complete • independently

36. PEDS’ Evidenced Based Decisions when and where to refer (e.g., mental health services, speech-language or developmental/school psychologists) when to screen further (or refer for screening) when to offer developmental promotion when to provide behavioral guidance or refer for mental health services when to observe vigilantly when reassurance and routine monitoring are sufficient

38. “Oh, by the way…..” Reduces “doorknob concerns” Focuses visit and facilitates patient flow Improves parent satisfaction and positive parenting practices Increases provider confidence in decision- making Increases attendance at well-child visits

39. Electronic PEDS • Automated scoring, generates parent summaries, and referral letters • www.forepath.org • Web accessible PEDS for • Licensed PEDS users • Self-selected parents • PEDS scoring Web service for EMR/EHR and other electronic systems

40. Subject Information

41. Parent Information

42. PEDS Questions

43. M-CHAT (optional)

44. Results (record)

45. Results (parent information)

46. Letter of Referral

47. Resources for Parents

48. Data Resources • All demographics captured • De-identified datasets available for research (subject to IRB and HIPPA) • Multiple formats available (SQL, text, Excel, etc) • Raw or aggregated data

49. Flexible • Works with several workflow approaches • Adaptable to licensee’s level of automation • Faster screening and analysis for paper-based organizations • Can be fully integrated with licensee’s electronic systems • – or anything in between • Referral letters and parent information sheets are fully customizable for each licensee or locale • Many options for collection of research data