Surveillance and Screening

1. Surveillance and Screening Partnerships and Advocacy: Integrated Services in the Early Years Jill Houbé, MD, MPhil, FAAP, FRCP(C)

2. Surveillance and Screening • Current child health status • Definition of terms • Tools and experience • Partnerships and advocacy

3. BC Child Health Status • Outcome measures • Process measures • Social determinants

4. Healthy Child Development Domains directly related to adult well-being: • Socio-emotional • Language/cognitive • Physical health

5. Early Development Instrument (EDI) • Kindergarten year • 5 scales • Vulnerable if below “BC cut-offs” 10%

6. BC EDI Results • No neighbourhood is immune • Vulnerability ranges from 13.4% to 39.6%

7. Corrected EverRiskMap

8. Why Does Early Identification Matter? • Documentation of benefits • for physical handicaps, mental retardation • improved family functioning • for environmental risk (e.g., Head Start) • decreased likelihood of grade repetition • less need for special education services • fewer dropping out of school • Clearer delineation of adverse influences • low-level lead exposure • adverse parent-infant interaction

9. Why Does Early Identification Matter? Legal Mandate • Canadian Charter of Rights and Freedoms (1985) • Section 7 Legal rights • Section 15 Equality Rights • BC Human Rights Code (1996) • BC School Act (revised 1989) Guralnick 1987

10. Child Health Status • 16% of children have disabilities • 20 – 30% detected before school entrance • There are known risk factors for delay and disability

11. NORMAL Guidance BELOW AVERAGE • Parenting • Mental health • Enrichment DISABLED • Therapy • Special Ed Glascoe, 1997

12. Effects of Psychosocial Risk Factors on Intelligence Percentiles 84th 75th 50th IQ 25th 16th Risk Factors Poor health status, > 3 children, stressful events, single parent, parental mental health problems, less responsive parenting, poverty, minority status, limited social support Glascoe, 1997

13. Surveillance and Screening • Current child health status • Definition of terms • Tools and experience • Partnerships and advocacy

14. Surveillance and Screening Hand in Hand

15. Developmental Surveillance “…flexible, continuous process in which knowledgeable professionals perform skilled observations of children ... With proper techniques, surveillance is family-focused, accurate, efficient, …” Dworkin, 2004

16. Developmental Surveillance • Eliciting/attending to parents’ concerns • Obtaining a relevant developmental history • Skillfully observing children’s development • Sharing opinions with other professionals Dworkin, 2004

17. Developmental Surveillance Children’s developmental competencies are best determined over time • “spurts” and pauses • variable rate across domains • longitudinal aspect of health supervision Dworkin, 2004

18. Attending to Parents’ Concerns • There is a strong relationship between parents’ concerns and child’s developmental status • Parents have high levels of sensitivity for problems regarding fine motor, language, cognitive and school skills • Parental concerns about gross motor, hearing and medical status are highly related to developmental problems Dworkin, 2001

19. DEVELOPMENTAL SURVEILLANCEParents’ Appraisals • In 87% of children with ADHD, parents have concerns related to impulsiveness, inattention or over activity • Absence of parental concerns or concerns in other areas (self-help or socialization) correlates with children without developmental disorders

20. DEVELOPMENTAL SURVEILLANCEElicit Parents’ Opinions and Concerns • Information available from parents • Appraisals (opinions of children’s development) • concerns • estimations • predictions • Descriptions • recall • report Dworkin, 2004

21. DEVELOPMENTAL SURVEILLANCEParents’ Appraisals • Concerns • accurate indicators of true problems • speech and language • fine motor • general functioning (“he’s just slow”) • self-help skills, behavior less sensitive • “Please tell me any concerns about the way your child is behaving, learning, and developing” • “Any concerns about how she…” Dworkin, 2004

22. DEVELOPMENTAL SURVEILLANCEParents’ Appraisals • Estimations • “Compared with other children, how old would you say your child now acts?” • correlate well with developmental quotients • cognitive, motor, self-help, academic skills • less accurate for language abilities • Predictions • likely to overestimate future function • if delayed, predict average functioning • if average, “presidential syndrome” Dworkin, 2004

23. DEVELOPMENTAL SURVEILLANCEParents’ Descriptions • Recall of developmental milestones • notoriously unreliable • reflect prior conceptions of children’s development • accuracy improved by records, diaries • even if accurate, age of achievement of limited predictive value Dworkin, 2004

24. DEVELOPMENTAL SURVEILLANCEParents’ Descriptions • Report • accurate contemporaneous descriptions of current skills and achievements • importance of format of questions • recognition:“Does your child use any of the following words…” • identification: “What words does your child say?” • produces higher estimates than assessment • child within a familiar environment • skills inconsistently demonstrated Dworkin, 2004

25. Developmental Surveillance Eliciting Parents’ Opinions and Concerns Caveat: Detection without referral/intervention is ineffective and may be judged unethical Dworkin, 2004

26. Developmental Surveillance An appropriate response to parents’ behavioral concerns is to seek additional information about children’s development • important indicators of children’s status • need for cautious interpretation Dworkin, 2004

27. Developmental Surveillance Opinions of other professionals offer valuable information regarding children's developmental functioning • input from preschool teachers, child care providers, visiting nurses • preschool teachers’ predictions of school readiness, kindergarten success Dworkin, 2004

28. Screening • Identify the likelihood of a disability • Do not provide a diagnosis • Can help identify a range of possible diagnoses that help focus referrals Prieto 2004

29. Screening • Brief • Standardized administration • Proven valid & reliable • For the asymptomatic

30. Detection rates: No risk factors and no screening • 30% of developmental disabilities • 20% of mental health problems

31. Detection rates: No risk factors and screening • 70–80% dev disabilities • 80–90% mental health problems • Over referrals related to psychosocial risk

32. Surveillance and Screening • Current child health status • Definition of terms • Tools and experience • Partnerships and advocacy

33. PDQ Denver-II Early Screening Profile DIAL-III Early Screening Inventory ELM Gesell Due to absence of validation, poor validation, norming on referred samples, and/or poor sensitivity/specificity Glascoe, 1997

34. Six Quality Tests • Parents’ Evaluation of Developmental Status (PEDS) (0 through 8 years) • Child Development Inventories (CDIs) (0 to 6 years) • Ages and Stages(0 to 6 years) • Pediatric Symptom Checklist (PSC) (4 through 18 years) • Brigance Screens (0 to 8 years) • Safety Word Inventory and Literacy Screener (SWILS ) (6 – 14 years Glascoe, 1997

35. Screen Selection Flow Chart Age Range 0–4 yrs 4–6 yrs 6–8 yrs 8–18 yrs PEDS or Brigance or SWILS ( + PSC) SWILS and/or PSC PEDS or CDIs or ASQ or Brigance PEDS or CDIs or ASQ or Brigance ( + PSC) Glascoe, 1997

36. Behavioral/Emotional Screening • Pediatric Symptom Checklist (PSC) • Eyberg Child Behavior Inventory • Family Psychosocial Screening

37. 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 Glascoe, 1997

38. 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. Glascoe, 1997

39. When Should You Ask for Further Evaluation? Sudden Unexpected Change In Developmental Trajectory • Unexplained regression • Sudden change in personality • Change in mood or emotional well-being • May be due to disease or illness • May reflect important events occurring at home

40. When Should You Ask for Further Evaluation? • Global Developmental Delay • Persistent significant delay in all domains that cannot be attributed to other known factors • Delays in a sphere of development that adversely impact the child’s functioning • At home • Daycare • School • Significant Emotional Concerns

41. What Do You Ask For? • Community health unit and GP • Hearing screen • Vision screen • Speech and language evaluation • Paediatrician referral • Infant Development Program • Child Development Centre • Sunny Hill Health Centre • BC Children’s Hospital Child Psychiatry • School Principal and Individual Education Plan

42. Sunny Hill Health Centre Outpatient Clinics • School Consults & SERT Team (Substance Exposure Resource Team) • Brain Injury • Craniofacial Clinic, Downtown Eastside Clinic & SERT Team • Visually Impaired Program • Preschool and Developmental-Genetics Clinic • Hearing Loss Team • SERT Team • Neuromotor/Spasticity/Feeding • Provincial Autism Program http://www.sunny-hill.bc.ca/sunnyhill/shhcc/default.asp

43. Alan Cashmore Centre • Child-Family Therapy Centre (604) 454-1676 • Under umbrella of services provided by Vancouver Coastal Health • Parent Infant Program – home based therapy for mother/family/infant having difficulties in the initial stage of their relationship (birth to 30 months of age) • Parent Child Therapy Program – therapy services for families finding it challenging to care for their young child (21/2 to 7 years of age) • Parent Child Day Program – intensive services for families experiencing a significant social, emotional and/or behavioral difficulties in parenting their young child (2 ½ to 6 years) • Childcare Centre Outreach program – consultation and support to childcare staff in their own centres in managing children with social, emotional and/or behavioral challenges.

44. Mental Health Services • Alan Cashmore Centre Child-Family Therapy Centre (604) 454-1676 • BC Psychological Association - www.psychologists.bc.ca • UBC Psychology Clinic - http://www.psych.ubc.ca/clinic/ • SFU Psychology Clinic 604-291-4720 • New Westminster Counselling • Tel: (604) 525-6651 • Treatment is free and patients can self-refer

45. Other Sources of Information • MCFD website - http://www.mcf.gov.bc.ca/ • Redbook - http://www2.vpl.vancouver.bc.ca/dbs/redbook/htmlpgs/home.html • Community Brain Injury Program coordinated by Center for Abilities

46. Psychiatry Clinics At BC Children's Hospital • Psychiatry • Mood Disorders Clinic • Neuropsychiatry Clinic • Attention Deficit Hyperactivity Disorder Clinic • Infant Psychiatry • Urgent Assessment

47. Surveillance and Screening • Current child health status • Definition of terms • Tools and experience • Partnerships and advocacy

48. Who does what? • Look where children are found • Use a valid, reliable tool • Talk to other people • Document

49. Current practices • Local initiatives • Targeted clinical risk • Only 1 in 3 BC children with developmental disorder receive screening/ assessment/intervention • IDP/CDC

50. Research and Experience • CHILD • Neonatal Follow-Up Program • Early Hearing Program • BC Healthy Child Development Alliance